The Case of Lung Cancer

Let’s face it. What we know about lung cancer is grim. It is the leading cause of cancer deaths in the United States for both men and women, and more than half of those with lung cancer die within one year of being diagnosed. The five year survival rate is only 18.6 percent, so that means that out of 100 people diagnosed, 82 of them don’t make it. The data alone is enough to be discouraging, but couple that with the stigma attached to the disease, and the people who have it, and the public perception about lung cancer becomes extremely negative.

The stigma attached to lung cancer comes mainly from the connection the disease has to smoking. For more almost seventy years now, we’ve known that lung cancer is a risk factor of smoking. Anti-smoking and tobacco campaigns have been successful in making sure the public understands that if we don’t want to get cancer, we shouldn’t smoke or use tobacco products. The good news is that as smoking rates have decreased, so have lung cancer rates. The bad news is that as lung cancer became known as a “smoker’s disease”, people began to believe that if you got lung cancer, you were to blame. As a result, lung cancer patients may feel that they receive less sympathy from their healthcare providers and others, and feel compelled to hide their condition causing them to suffer from guilt, anxiety, depression and isolation. Patients suffering from a stigmatized disease also may avoid or delay seeking treatment or a second opinion, and may receive lower quality of care. In addition, the clinical guidelines, diagnostics, and treatments for lung cancer aren’t as comprehensive as they are for the cancers without stigmas attached. Further, there is less research, data, and funding about how to increase lung cancer survival rates.

Often, it is the survivors of a disease, or family members who have lost a loved one, who form the advocacy groups, drive the fundraising efforts, and are the proponents for research. That hasn’t seemed to be the case for lung cancer for a couple of reasons. First, the stigma attached to lung cancer prevents survivors from speaking up because of the shame and guilt associated with having the disease. The stigma also appears to carry over to family members and others, such as celebrities and community leaders, who don’t feel comfortable advocating for those who are perceived to have caused their own illness. Secondly, lung cancer has a low survival rate, and, therefore, fewer survivors to lead the charge.

In order for the fight against lung cancer to have some of the same advances that less stigmatized cancers have, the public awareness needs to go beyond the labeling of lung cancer as a “smoker’s disease.” People who have never smoked, and those who quit many years ago, get lung cancer. Lung cancer can also be genetic. There are many risk factors for lung cancer in addition to smoking. They include: being exposed to secondhand smoke, asbestos, arsenic, chromium, beryllium, nickel, soot, or tar; exposure to radiation therapy to the breast or chest, radon, and imaging tests such as CT scans; living where there is air pollution; and a family history of lung cancer. While we don’t want to diminish the risk of smoking and the benefits of giving it up, it is important to note that not all smokers get lung cancer, and not all people with lung cancer are smokers.

Despite the stigma and negative public perception, there are organizations such as the American Lung Association and Patient Empowerment Network who are working to reduce the stigma of lung cancer and raise awareness about the disease. The PEN Living Well with Lung Cancer series is a live-streamed webinar program where patients, and their family members and caregivers, have the opportunity to interact with experts in the lung cancer field. The programs include panel discussions and a question and answer session. The program is recorded and made available through our website. PEN also provides town meetings and conference coverage with topics pertinent to those affected by lung cancer. Through our Notable News posts on our blog, we strive to provide patients with information about the latest advancements in all cancers, including lung cancer. This month you’ll discover that there is good news about lung cancer, thanks to new findings about sugar and cancer’s attraction to it. You can find that information and other updates here.

It is important for lung cancer patients, and all cancer patients, to maintain focus on the good news and to have hope. Every 2.5 minutes, someone in the US is told that they have lung cancer. Wouldn’t it be wonderful if they could also be told that there is hope?


Sources:

https://seer.cancer.gov/statfacts/html/lungb.html

https://www.lung.org/assets/documents/research/addressing-the-stigma-of-lung-cancer.pdf

https://www.cancer.gov/types/lung/patient/non-small-cell-lung-treatment-pdq#section/all

https://scienceblog.cancerresearchuk.org/2018/11/16/science-surgery-why-do-never-smokers-get-lung-cancer/

Self-Care During Illness: 
Tips for Cancer Survivors

Self-care is essential for all of us; it’s something that allows you to take a mental health break while also making sure your body is in good shape. After a period of stress or anxiety, you need a little time to heal and get yourself back to a good place. This is especially true for cancer survivors, who battle stress, physical pain, anxiety, depression, and worry every day. Cancer comes in many different forms and affects the body and mind in different ways, meaning no two people will handle it the same way. What works for you when it comes to coping may not work for someone else, and vice versa.

Fortunately, there are many different ways you can learn to cope with your feelings and take a time-out. From daily exercise to learning to listen to your body’s cues, self-care involves a variety of activities for you to choose from. You may choose to practice self-care alone or with a close friend; you can do it from the comfort of your own home or at the gym. Whatever makes you feel good in a healthy way is classified as self-care.

Keep reading for some great tips on how to practice self-care as a cancer survivor.

Take Your Medication as Directed

Most cancer survivors need medication to help with pain, nausea, and other symptoms that will make daily life a little easier. Some take several different medications every day, and it’s imperative to keep track of these and make sure you’re taking them correctly. You might use an app on your phone to help you remember what time you need to take specific pills, or invest in a sorter that will keep all your medicines measured out for each day.

If you feel that the dosage on a medication isn’t right, talk to your doctor immediately rather than attempting to change the dosage yourself or discontinuing use. Because many of these can be habit-forming, using them correctly is important not just in maintaining your health, but because opioids can be highly addictive and can cause many more issues than they treat if used incorrectly.

If you’re concerned about using prescription medication like opioids to treat your pain and nausea, it’s worth talking to your doctor about the option of CBD. It’s a natural, non-narcotic and non-hallucinogenic treatment that provides relief for many of cancer’s most troubling side effects, such as muscle pain, nausea and anxiety. As with any treatment, be sure to consult your physician before giving it a try.

Eat Well

Sometimes, medication or chemotherapy can interfere with appetite, making it extra important to make sure you’re eating well when you are hungry. Try to eat small snacks throughout the day made up of whole, unprocessed foods, and remember to stay hydrated. Talk to your doctor about the best foods for your body’s needs, and consider hitting up the farmers market for fresh produce as often as you can.

Make Your Needs a Priority

Many individuals who are faced with a battle against cancer find that they are so focused on the people around them that they rarely take time out for their own needs. You may be worried about how your family will pay for treatment or how your illness is affecting your children. While these are valid concerns, one of the best ways to help ease your mind is to take a little time for yourself. Go for a short hike, sit down with a good book, or lie in bed and listen to your favorite music. Learning how to slow down and reset your mind isn’t always easy, but it’s necessary.

Try Something New

As long as you have the energy for it, now is the perfect time to try something new. Finding something that is enjoyable and allows you to shake off worry or anxiety for a while is a great way to take care of yourself. Whether you want to learn a new language or travel to a place you’ve never been, don’t put it off. Just make sure your health won’t be affected negatively, and talk to your doctor before making any major plans.

Taking care of yourself can be a big job, so remember that there are only so many things you can do in a day. You might try yoga and meditation during this time to learn how to practice mindfulness and focus on the present; this can help you cope with stress in the moment so that you can turn your mind to more important things.

Returning To Work After Cancer Treatment. Part 1: Preparing the Ground

This month’s article is the first in a three-part series which deals with common concerns on returning to work after a cancer diagnosis and offers practical solutions for helping with your re-entry into the workplace.

A diagnosis of cancer is a profound disruption in our lives, leaving no area untouched. Cancer impacts our family life, our relationships, and our careers.  If you have been absent from work, the decision to return often brings with it mixed emotions.  While you may welcome a return to normality, a steady income, the company of work colleagues and a sense of identity, you may also be feeling apprehensive about how you will cope.

Particularly if you are used to identifying closely with your job, a prolonged absence from work can be difficult. Even if you continue working during treatment, you may also experience some difficulties. You may be wondering how you will cope with your workload.  Will your co-workers treat you differently? How will your boss react to you? Will your promotional opportunities be affected?

Although the majority of those who return (or continue) to work after cancer adapt well, some will encounter difficulties. In Part 1 of this series, we will take a look at some practical ways to prepare for your re-integration back into the workplace.

When Do You Know It Is Time To Return To Work?

There is no one-size fits all answer to the question of when it’s time to return to work. It will depend on the type of treatment you received, your financial situation, your physical and emotional state and other personal factors.

Only you know whether it would be better for your psychological health to be at home, away from any professional stresses, or at work, where distractions may take your mind off other things.  Chris Lewis, founder of Chris’s Cancer Community, believes that “work can be a fantastic therapy, when dealing with life’s challenges. We feel valued, and of course, can provide an income for our family.”

On the other hand, perhaps you see cancer as an opportunity to re-evaluate your career. You may find that your work priorities have changed, or you feel unable to keep up with the demands of your previous work pace. Perhaps you want a new job which will allow you more flexibility to pursue other goals or you may want to explore working in a field which is more personally fulfilling (we will look at this in more detail in Part 3).

Preparing the Ground

Doing some groundwork before you return to work should help make re-entry more manageable.  Plan in advance how you will respond to questions from co-workers, deal with your boss’s expectations, and handle your workload. Here are some tips to help you.

1. Making adjustments and accommodations to your work environment

Your employer has a duty to make ‘reasonable adjustments’ to your workplace and working practices. What is considered a ‘reasonable adjustment’ depends on factors such as the cost and practicality of making the adjustment, which is why it’s important to discuss things as soon as possible with your employer.    Some things to discuss include the possibility (at least temporarily) of a phased or gradual return to work, job-sharing, working from home or flexi –time.

A word of caution here. It is not unusual for part-time work to turn into a full time job. Set clear boundaries about what is achievable in the hours you have agreed to work.  If you are thinking about working from home, be aware that this can be quite isolating. Will you miss the camaraderie of the office?

Breast cancer blogger @lifeafterlola suggests that “A phased return is good, combining time back at work with work from home or a day off on, say, a Wednesday to break up the fatigue. The hardest thing to cope with,” she says,  is getting back up to pace with early mornings, late finishes and travel on top of work and social adjustment.” Julia, co-founder of breast cancer Twitter chat, #BCCWW offers a practical tip to reduce the stress of traveling to work.  “If it’s possible travel outside rush hour,” she advises.

Next, think about your physical environment at work. Revisit you work-station. Does it need to be redesigned or fitted with equipment such as back support or other devices to make you more comfortable?

The size of your company may affect how much accommodation to your needs you can expect to get. Larger organizations are in a better position to offer you more flexibility and support, but most employers will be understanding if you communicate your needs clearly with them. It may be helpful to have a letter from your doctor to document any accommodations required.

2. Getting up to speed with changes at work

Depending on how long you have been absent, you may find things have moved on since you were away from work. If this is the case, take some time to get up to speed with new systems and developments. This may include attending formal training sessions in advance of getting back to work, or having a colleague take some time to get you caught up again.  Julia explains how she struggled initially with her job which “involved reading lots of draft legislation, policy papers, etc.” and after speaking to her boss, did some refresher training to get up to speed again.

3. Updating your co-workers on your plans to return to work

Most of us have built up a carefully constructed professional persona and we work hard at protecting it by keeping a fairly strict line of demarcation between our personal and professional lives. It can be unsettling to find these lines have become blurred by your illness.

Not everyone knows the right thing to say or how best to offer support. Connecting with colleagues before you return to work can, in the words of Julia, “get a little of the first day nerves out of the way, especially  if you are feeling anxious about their reactions to your changed appearance.”

In general people will take their cue from you, so take the lead with colleagues. Talk them on the phone, send an email or arrange to meet for coffee or lunch. Reassure them that you are doing ok and that you still want to be a valued member of the team.  Decide in advance how much you are comfortable sharing.  If you are a naturally open person, then you can talk frankly with your work colleagues, letting them know what they can do to help you ease back into work. If you are more private, just tell everyone that you appreciate their asking, you are doing ok now and you are looking forward to getting back to normal.

4. Communicating with your manager

Most managers and bosses will support your transition back to work, but they may be unsure of how best to handle this. As Kate Bowles points out in this post: “The particular challenge of having oncology patients (which is what we still are) as staff under your management, as colleagues and as workplace friends, leaves everyone falling back on adhoc interpersonal skills.”

It can be difficult for managers and colleagues to know how to strike the right balance between giving you extra support and allowing you to carry on as normal.  As Julia points out “Your line manager isn’t a mind reader. Be honest about what you can/can’t do, offer solutions, about managing work and don’t just leave it to them.  It should be a two way process.”

For your part, you may have concerns about being perceived as a productive member of the team.  Open and honest communication is key here. Check in regularly with updates on how you are coping and to review your productivity.   If there are things that you are not ready to undertake initially, then be honest, and ask for help if you need it. Set clear boundaries that will allow you to say no to certain types of requests, such as staying late for non-essential projects.    “Learn to say I can’t ….YET,” advises Siobhan Freeney, founder of Being Dense, an organization which raises awareness of Breast Density and its associated links to breast cancer and screening.

A note on work discrimination. Legally, your cancer history can’t be used against you in the workplace. But it can be difficult to determine this, because discrimination can be subtle.   Know your rights. Look into whether you are protected by the federal Americans with Disabilities Act or your state’s Fair Employment Law.

5. Book a counseling session

If you are worried about how you will cope on your return to work, consider booking some sessions with a counsellor or cognitive behavioral therapist to build up your confidence and coping skills.  Some employers have an employee assistance program in place which allows you to speak in confidence to a trained professional about your concerns. Ask if this is available in your company.

Learning some stress management techniques in advance of your return will also help you cope better (we’ll look at this in more detail in Part 2).

6. Stock your freezer

When we’re tired, we tend to gravitate towards processed food which depletes our energy reserves further. Siobhan suggests you “stock up handy home cooked freezer meals in advance of returning to work to avoid being tempted to skip dinner when over-tired.”

The key to managing the stress of working after a cancer diagnosis is to prepare as much in advance of your return to the work place. Be prepared to be flexible in your planning approach. Cancer recovery is an ongoing process. There will be many ups and downs.  You may have to deal with late side-effects of treatment or side-effects related to medication. Be ready to adjust your work practices if and when you need to.

Next month, I will share more tips and practical advice on handling your work load, managing your time and dealing with issues such as fatigue and concentration once you return to work. Until then, if you have any tips to share with readers about how you prepared your own return to work, please share them in the comments below.

Notable News: November 2018

November is National Lung Cancer Awareness Month, and if ever there were a cancer that needed an awareness month, it’s lung cancer. Sometimes referred to as the invisible cancer, lung cancer is a disease caught up in a smoke cloud of misconceptions, and those misconceptions can prevent patients from early detection, treatment, and support. Several of the myths and misconceptions about lung cancer are addressed and dispelled in a recent article at fredhutch.org. One of the main myths is that you only need to worry about lung cancer if you are or ever were a smoker. That’s simply not true. In fact, people who have never smoked can get lung cancer, and it can be a genetic disease. Other myths include the belief that there are no early detection screening processes and that there has been no progress in lung cancer research. While it’s true that other cancers seem to have more screening options and better prognosis, advancements are being made in lung cancer. Organizations such as Patient Empowerment Network are making progress in building awareness and reducing the stigmas about lung cancer. See the rest of the myths and misconceptions and how they are dispelled here.

There is nothing sweet about having lung cancer, but there may be a sugary clue that could lead to earlier detection, reports forbes.com. Researchers have discovered that early-stage, non-small cell lung cancer (NSCLC) tumors and precancerous lesions produce high levels of a molecule that they use to consume sugar to help fuel their growth. The molecule, called SGLT2, could be used to detect early stage NSCLC. Researchers also found that a diabetes drug, which blocks SGLT2, also prevented tumor progression in mice, which shows promise for possible future treatment of NSCLC. Further studies of SGLT2 could hinder the development of malignant NSCLC, and more information about this hopeful development can be found here.

Another hopeful lung cancer development comes in the form of a hot needle, reports dailymail.co.uk. The treatment, called radio frequency ablation, is being used to diagnose and treat difficult-to-reach tumors. In addition to being able to destroy the tumor by heating it up with radio frequency energy, doctors are able to use the needle to remove part of the tumor for biopsy. The needle works in place of attempting to access the tumors through invasive surgery. The hot-needle treatment is considered safe for repeated use, and a report showed that half of the patients treated with the hot needle survived at least five years. More information about this hot new treatment can be found here.

We would be remiss if we didn’t note that November is also National Family Caregiver’s Month. There are approximately 43.5 million unpaid caregivers in the United States and they are a critical component of a cancer patient’s journey. It is important for caregivers to make sure they are practicing self-care as well, and there are a number of resources available to them to help ensure caregivers have the information they need to care for their loved ones and themselves. The PEN Path to Patient Empowerment guide provides resources for care partners, including links to the Family Caregiver Alliance website and the American Cancer Society Caregiver Resource Guide. Chock full of information for caregivers about caregivers and the patients they care for, these resources are a must have for any caregiver and can be found here and here.

Oh, and November is also the month where we give thanks. Happy Thanksgiving from the PEN Family to your Family. We are thankful for you!

Ask the MPN Expert – Dr. Joseph Scandura

Ask the MPN Expert – Dr. Joseph Scandura from Patient Empowerment Network on Vimeo.

MPN specialist Dr. Joseph Scandura from Weill Cornell Medicine answers patients’ burning questions.


Transcript:

Andrew:
Greetings from southern California. I’m Andrew Schorr from Patient Power. Welcome to this Patient Empowerment Network program where you can ask an MPN expert your question. I’ve been living with an MPN, a myeloproliferative neoplasm myelofibrosis, since 2011. So, believe me, I have questions and I want answers just like you. I want to thank the Incyte Corporation for its financial support, but tell you, of course, that all the editorial control is our expert and our producers and me. Nobody tells us what to ask or what to say.

Okay, let’s meet today’s MPN expert. Joining us from New York City is Dr. Joseph Scandura. He is with Weill Cornell Medicine in New York City and he is also the scientific director of the Richard T. Silver Myeloproliferative Neoplasm Center at Weill Cornell Medicine. Dr. Scandura, welcome and welcome back to Patient Power. We’ve had you before. Thanks for being with us.

Dr. Scandura:
Thanks for having me, Andrew.

Andrew:
Okay, and I should mention that Dr. Scandura is a physician-scientist, so you can see that whiteboard behind him. He spends time in the lab, as well as seeing patients, in-patients, and in clinic. So, he is meeting us, but also working on a cure and we’re gonna talk more about that and hopefully, we can get there. Okay, are you ready for our first question Dr. Scandura?

Dr. Scandura:
All set.

Andrew:
Okay. So, this one comes from Philip who writes and he says, “I’m a 63-year-old male with PV, polycythemia vera. What does it mean that my blood is too thick?”

Dr. Scandura:
What it’s probably referring to, the term too thick is a little bit – can be generalized in a lot of different directions. It’s a colloquial term, not really a medical term, but what people often are referring to there in the context of polycythemia vera is too many red blood cells. If you think of the blood vessels in your body as being highways, they can only accommodate a certain amount of traffic. And you being in southern California are probably aware of this, that sometimes there’s too many people trying to get on the highway at the same time and that slows everything down. You could consider the highways too thick in that situation and that’s what’s really happening in polycythemia vera.

There’s too many red blood cells. There’s about 1,000 red blood cells for every of the white blood cells there, so the most common blood cell type and they occupy about half of the whole blood volume. And when you have too many being produced, they end up causing traffic jams in the blood vessels and that is what people are trying to describe when they’re saying the blood is too thick.

Andrew:
And you’re at risk for stroke and blood clots?

Dr. Scandura:
Yeah. So, it has a lot of both short-term and long-term consequences. Short-term certainly it provides a risk of having abnormal blood clots. That can be in an artery, so that could be a stroke, an artery in your brain, or an artery in your heart, a myocardial infarction or heart attack. It can also be a clot in a vein and so these, I’m sure you’ve seen them on TV, the advertisements for DVT or deep venous thrombosis or pulmonary embolism which is usually a clot in a vein that then has broken off and traveled through the circulation and landed in the lung where it can cause symptoms there. And so, the short-term risks of a clot are certainly elevated in people with polycythemia vera when the blood counts aren’t controlled.

Andrew:
Okay. Just one follow up question. Philip was wondering about this too. So, we see ads on TV whether it’s the DVT medicine ads or the blood thinner ads. Does that apply to people with PV?

Dr. Scandura:
It can. We treat people with PV to reduce the risk of a clot, but some people are diagnosed with a clot at the same time they’re diagnosed with PV and some people, even with the best of treatment, end up developing a clot. If it’s a clot in the vein, then one of the things that is a standard of care is to administer drugs that colloquially again are referred to as blood thinners. In this context, it has a different meaning and this is a group of drugs that interfere with the blood clotting system. So, these are proteins, not cells, and it’s what – if you ever have cut yourself and you feel just with your fingers, it gets a little sticky between the fingers. That’s actually clotting.

It’s a little bit like Jell-O. It starts out liquid and then it solidifies and that’s what your body does to help prevent bleeding. It forms this sort of polymer fiber that ends up being part of the plug. And what the blood thinning medications, the so-called blood thinning medications, do is they interfere with that process. Either given by injection or given by pill, the ultimate goal is to reduce the formation of that sort of sticky acellular clot. And that’s more of a treatment and can be a preventative for future clots as well, but it’s a little different than what we were talking about before in terms of too thick blood from too many red blood cells.

Andrew:
Too many cells versus the quality of the cells.

Dr. Scandura:
Yeah, but not even the cells. A lot of the blood clotting factors are produced by your liver. They’re not from the cells themselves that are floating around in the blood.

Andrew: I’ve never understood that before. So, thanks for explaining. I should also just say one thing about Philip. He shared with us that he has AFib. So, when somebody, and that’s not uncommon atrial fibrillation, does that complicate all the treatment for somebody with PV?

Dr. Scandura:
Well, one of the risks with AFib, some of them can be just related to the heart, it can disturb a little bit in how the heart functions and if people have some mild symptoms, AFib can make symptoms worse just from a heart function standpoint. But one of the things that’s related to, again some of the commercials you see on TV and the rationale for blood thinners, is the heart – the atrium, the left atrium which is really what fibrillates, which is just – normally the heart is pumping like this, all together coordinated. And what fibrillation means is it’s sort of not doing that. It’s going like this and what happens is the blood and the surface of the heart ends up not being pushed out normally.

And sometimes actually clots can form on the surface of that fibrillating heart and then when they get pushed out, they can travel. And because it’s usually the left atrium where this happens, when they travel they go into the arteries and then they can form clots and that can be stroke is the big thing people worry about. So, you can have atrial fibrillation that puts you at risk for stroke and that’s why people think about anti-coagulation medications to prevent that risk. And so, again, that’s another rationale for blood thinner, although it has nothing to do with the blood being too thick. It has to do with atrial fibrillation itself.

Andrew:
Okay. So, two things going on. Here’s a question we got in from Julie. Julie says, “What is the significance of a very low allele burden in a JAK2 positive patient?” And may you could define allele for us too.

Dr. Scandura:
Sure. So, as you know, we have some of our genes from mom and some of our genes from dad and the genes that we get are always in these two copies. And so, one copy from mom, one copy from dad, and they’re mixed and matched while we’re being sort of grown up from the embryo. But what happens in MPN is sometimes one of those copies, always starts with one of them, becomes mutated and that can be for instance, in the most common mutation, in the JAK2 gene, JAK2 V617F, a particular mutation that’s associated with abnormal function of the JAK2 gene product. And so, if we have just one copy in a cell, then one copy’s normal and one copy is mutant.

So, if we are talking about that one cell, that variant allele frequency, so that’s the abnormal gene. The proportion of all the genes that are abnormal would be 50%. Right? One abnormal, one normal. But now we think about all of the blood cells, trillions upon trillions of blood cells and then we have to take sort of an average of all of those cells. Some of them will be normal, some of them will be MPN cells, some of them will have one copy normal, one abnormal, some two abnormal, and some both normal. And so, when we look in a composite from a blood draw which is generally what people are sending, it’s a representation of how many abnormal alleles are present among all of the alleles of all of the DNA from the blood cells that’s been selected.

So, what a low variant allele frequency means that the proportion of mutant alleles in that sample of your blood is low. So, low would be maybe 10% or 5% or something like that and what is the significance of that? It’s an area a little bit of some debate, but there’s certainly a number of studies that have shown a correlation between the variant allele frequency in blood and the disease type itself. So, for instance, essential thrombocythemia, or ET, generally has a lower bearing allele frequency than myelofibrosis for the same mutation. And polycythemia vera is often in between.

Andrew:
While we’re talking about genes, I just wanted to bring in this question from Jocelyn because we’ve been learning are we JAK2 positive, are we CALR positive, these others that you’ve been discovering. So, Jocelyn said, “In 2006 I tested positive for JAK2 V617F. In 2018 I was told that I’m not JAK2V617F positive, but that I’m CALR positive. So, is it common for mutations to change and what does it mean?”

Dr. Scandura:
So, it’s not common for the mutations to change in terms of going away if they’re present, although there are certainly examples of this happening. It’s not common. What is probably a little bit more common is sometimes people have one mutation or a couple mutations and then sometimes more mutations are found later. And that often, not always, is linked to the disease changing its character itself. So, somebody with polycythemia vera having more of a fibrotic phase of the disease. In this situation, it’s a little hard to know exactly what happened, but there is a fair amount of variability from one laboratory or one test type to another in terms of sensitivity and the specificity of what is being detected.

So, JAK2 may have been at a very, very low level, could have been an erroneous measure, or it could have been at a relatively low level and the calreticulin mutation wasn’t tested for. And then later somebody retested with a different test that wasn’t sensitive enough to pick up the JAK2 mutation and they looked for a CALR and now that’s coming up positive.

So, the testing modality, the type of test that’s being done, and its individual sensitivity is an important part of this story and it’s a little hard, I think even for many physicians, to sort of get their heads around because it’s not like a blood count where you have international standards and basically a half-dozen equipment makers everybody uses across the world. There’s a lot of different technologies, each of which have little wrinkles to them that can limit somewhat exactly what’s being reported.

Andrew:
Okay. Here’s another one we got. This was actually asked by several people. Nick, Maggie, and Philip all want to know related to phlebotomy. What are the goals of phlebotomy as a treatment and how does it work and when do you know when it’s time to switch from phlebotomy to medication?

Dr. Scandura:
Right. So, I just came from a conference the end of the week and this is a topic of debate among physicians. When, whether to do phlebotomy? Whether phlebotomy therapy by itself is sufficient? What are the alternatives and when to make those decisions? I would say, I can tell you what my own feeling is. I feel that there is good support to justify that, but to be totally honest, there are physicians who feel differently than I do and I don’t know if any of us can claim to be absolutely correct. But I think we can all agree that the goal of phlebotomy in the short term is basically to take cars off the highway.

If you go back to the analogy of having too many cars on the highway causing thickened blood or this sludging from the red blood cells, this is a therapy specific to polycythemia vera, is that phlebotomy is just a very simple way of taking blood out of the system, taking cars off the highway. So, if you were to imagine and I frequently imagine this in New York City, is all of the sudden a third of the cars disappeared, it’d be a lot easier to get around. And so, that’s really what the goal of phlebotomy is, is to make it a little easier on your body to pump the blood around because there’s less resistance to having all that traffic in the vessels. How much? Go ahead, you had a question.

Andrew:
I was just gonna say, but debate about when to leave phlebotomy behind and have medication try to do the job when you prove one or others that may be coming.

Dr. Scandura:
So, I think the first goal is to get people under what would be considered control. So, an adequate level of traffic. And the numbers that are generally accepted by people in the field is having a hematocrit, that’s the portion of blood occupied by red blood cells, in males it’s below 45% and in females below 42%. Although we can all argue about that a little bit. I think people settle down around those numbers.

When is too much? My personal feeling and this is where there isn’t great data, so you’re left with opinion, but my personal feeling is it depends a little bit on the patient, the convenience, and I find that people who are getting phlebotomy more than four or five times a year, it ends up being a real burden on them in terms of the amount of time that they’re having, poor control of their polycythemia vera, and the amount of time required for phlebotomy, and the amount of risk of things like iron deficiency which can cause symptoms.

And then there’s some suggestion, I wouldn’t say great data, that maybe iron deficiency or repeated phlebotomy may be a risk in the long term, although I think that data is not very clear. My biggest determinant is patients, in my experience, just get a little fed up with getting phlebotomy when it gets above four, five, six times a year.

Andrew:
Okay. Thank you for that. I should mention to our audience again if you want to send in a question, whether we can use it on this program or a whole bunch we’ll be doing coming up, send it to mpn@patientpower.info. Okay, so here’s a question we got from Nick and all of us wonder about it. How often or do we need bone marrow biopsies so that you, as our doctor, and we are well informed about what’s going on?

Dr. Scandura:
So, another area where there isn’t – you know, in medicine we look for the perfect data. We’ve controlled – we treated one group of very similar patients one way, we’ve treated another group of people another way, and we compare and see who does better. What’s the better approach? This hasn’t been done for how often to check bone marrow. I think bone marrow evaluation is very important. Personally, I generally follow how the patient is doing as the primary determinant and if there are any signs that something is changing. And those signs can be how the patient is feeling, new symptoms that are arising, but oftentimes it can be just in how the blood counts are responding.

You’re on a stable dose of a medication for several years and all of a sudden it stops working or all of sudden it starts working too well. You have very low blood counts whereas before you were okay. That suggests to me something’s changing. The bone marrow is the factory for all the blood cells. So, if you wanna know what’s happening with the production in the factory you really have to look into the factory and see what’s going on. And so, that’s my personal threshold for doing a bone marrow, when I’m seeing something that’s suggesting that the factory is not functioning the way it was the last time I looked.

Andrew:
Okay. And for those of us who’ve had many bone marrow biopsies, and I have, hopefully where it’s done is someone who does it frequently. Usually, the anxiety we have is worse than the exam itself. It takes 15, 20 minutes, whatever and someday I’ll tell you the story of the lady down at MD Anderson who believed in voodoo and talked to the bone marrow as she was pulling it out. And it was so weird, that I was so distracted, I didn’t feel a thing, but anyway I understand it’s important.

Here’s a question that will help our friends with ET. This is from Michelle. She says – well actually now she has post-ET myelofibrosis. She says she has ASXL1 and TP53 gene mutations. Does the mere existence of these predict aggression and poor outcome? That’s what she worries about that those have been found.

Dr. Scandura:
Well, obviously every individual has their own history that they’re developing and so exactly what this means for you, for an individual, is different than what it would mean for a population of people with similar mutations. That’s really what we know in medicine. We look at people in a cross section and we say people who we can put into this bin tend to behave in that way, but within that bin, there are individuals who don’t act that way, the way that the others do. So, I would in myelofibrosis, in MDS, in polycythemia vera, P53 mutations are an area of some concern, as is ASXL1 mutations are also an area of some concern.

In ET it’s less well established and so I think because, if this was just ET and you had those mutations, I think many people, myself included, would say well, maybe we don’t know perfectly, but it is an area of some concern. I’m gonna keep a closer eye on you. Now that it has already evolved into myelofibrosis, I would say this is probably more like myelofibrosis where we know that P53 mutations, TP53 mutations, and ASXL1 mutations, can sometimes be some of the harder ones for us to treat. It’s something that, if an allogenic transplant is something that is possible, should at least be considered and discussed.

It doesn’t – speaking with a transplanter, getting typed doesn’t mean you have to get a transplant, but it gives you information and so I think that that would be a reasonable thing to do. Again, the decision at the end, it may not be the right decision for you, but it is something that is information for you to use in making informed decisions.

Andrew:
Right. I did have a consultation with Dr. Castro, who was at the time here in San Diego, exactly about that. Not to take action, but just to have the relationship and be typed, et cetera. Here’s a question we got from Paul. He says, “I was diagnosed in 2009. I take a weekly dose of 90 mg of interferon. How long can a patient continue to take interferon and what indicates a move to change treatment?”

Dr. Scandura:
So, we have people who have been treated for 20 plus years with interferon. So, I don’t know if there is a known duration which is too much. For many patients it’s a very well tolerated therapy, can be quite effective, and I think that it is one of the few medications that seems to have some disease-modifying activity. However, when to change? If it looks like it’s not working, it’s time to think about changing and that can be adjusting the dose, but I think if somebody has been on it for a long while, that’s when I think thinking about additional therapy, either adding another medication to the interferon or changing completely to a different medication.

Clinical trials, there’s a lot of activity in MPNs in clinical trials. Thankfully, over the past five years or so, it’s really been increasing. There’s a lot of options. There’s some drugs that we’re really pretty excited about right now in terms of thinking they might have some nice activity and talking to somebody about what might be a suitable treatment for you if the interferon was not working anymore.

Andrew:
Okay. Here’s a – again we’re getting similar questions from a number of people. So, Ragita, Nankin, Raven if I’m saying the name right, and Jacquelin sent in basically this question. How common is it in patients with MPNs to have bone pain? What causes it? Is there anything that can help with the pain?

Dr. Scandura:
So, bone pain is always on the list of symptoms reported by patients with myeloproliferative neoplasms. I wouldn’t say, in my experience, it’s one of the more common ones. It might be a little bit more common early in disease. Sometimes things like phlebotomy that you can actually have a rebound where the bone marrow is a little bit revved up to try to replace all those cells that were taken out, that can cause some bone pain. It can be seen in myelofibrosis occasionally and sometimes when the disease is becoming more aggressive or is having a – changing its pace. But the cause of bone pain, we think of as being related to sort of expansile pain.

So, the bone marrow, the factory for all the blood cells, sometimes is just working so hard that it causes, it irritates the bone fibers that are around the surface of the bone. There’s very little in the way of pain fibers inside the bone, but on the surface of the bone you have a lot and that expansile pain, that gives that sort of vague, achiness people often describe as bone pain. The treatment for bone pain in some ways is determined by what the cause is. If it’s just, for instance, a rebound after phlebotomy, it can last a day or two and then go away. And so, short-term symptomatic treatment with non-steroidal anti-inflammatories, NSAIDs like Motrin, can be helpful or Tylenol even.

But occasionally patients report a real benefit from things like histamine blockers which the mechanism for that is entirely unknown, but there’s certainly a population of patients who feel like the bone pain has gone away with medications like Claritin you can get over the counter. It’s worth a try. They are very well tolerated medications and not all patients have any symptomatic benefit, but a subset of people do. If the bone pain is related to the cells being too active, a very proliferative feature of the disease, sometimes it dictates treatment.

So, if you were on phlebotomy alone, well maybe it’s time to change to a more cytoreductive therapy and see if that can help with the pain. Sometimes it prompts additional evaluation. If you’ve never had bone pain, all of a sudden the blood counts are a little different, you have bone pain, it might be something somebody would think about doing a bone marrow evaluation for. Again, looking in the factory which is probably where the cause is coming from.

Andrew:
I have a couple more topics I want to cover just before we close. We’ll go just a little bit longer if that’s okay. So, Robert wrote in and said, “How does a stem cell transplant cure myelofibrosis?”

Dr. Scandura:
So, I’ll go back to that factory analogy. If you think of the bone marrow as being sort of corrupted by these MPN cells. You have, normally this is a very orderly factory. It’s producing a number of different lines if you think of it as a car factory. You can be producing red blood cells maybe your sports cars, and your white blood cells, your infection-fighting cells, as sedans, and platelets as SUVs, but it’s all very orderly and it should be proceeding in a regular way. And you get MPNs and somebody has just turned up the volume and are just cranking out a lot of cells. And sometimes that production starts becoming abnormal too and that’s more like in a myelofibrotic setting.

And so, what is the point of a stem cell transplant is really to clear out that factory, get rid of all the workers in there, and replace them with completely different workers to come in, set up shop, clean up the factory, and start normal blood cell production. There’s another part of it is, it’s not just the blood cells, it’s actually the immune system. And so, you’re giving the recipient an entirely new immune system. You have to wipe out the old immune system to allow the new donor cells to get a hold in the bone marrow and then they have to be educated to sort of relearn how to fight off infections and to figure out who is who.
So, graft versus host is one of the complications where those cells from another person come into the recipient and say, “Ah, I don’t know you. I’m going to attack.” And so, that can be a problem. It can be a short-term problem. It can be a long-term problem. It can be mild and it can be severe, but there’s another edge of that sword which is what we think of as graft versus leukemia effect, or in this case it would be graft versus MPN effect where some of those donor cells recognize the little differences between them and the MPN cells and wipe them out. And so, that’s really what you’re trying to do is allow that new immune system to find the bad actors and wipe them out.

Andrew:
Okay. You touched on something I think we’ve got to ask about and that is people are hearing in the blood cancers now the experimental and in some cases an approved approach called CAR-T, chimeric antigen receptor T-cell therapy, but again immunotherapy to train the T-cells to fight your ailment. What do you think about that in MPNs? Does it have promise?

Dr. Scandura:
I mean, it definitely has promise. It’s been a challenge in myeloid disease as a whole, so AML, MDS, MPNs have not been the first diseases where this has been shown to be successful, more lymphomas where it has had a lot of traction and some nice responses. What it really is it’s a living drug and this can be done in a couple different ways. They can be cells from yourself that then are treated in the laboratory so that they start recognizing these immune cells. You start tricking them into saying, “I’m going to attack this particular thing.” Even though they weren’t really trained to do that, they are now being tricked into doing that.

And so, in a disease like a B-cell lymphoma, most of them express a particular protein that’s on B-cells, CD19. So, if you take these CAR-T cells and you say, “Well, go out and kill everything you see that has CD19 on it”, it will wipe out a lot of those lymphoma cells. In myeloid diseases like MPNs, it’s a little harder. The targets are not so clear-cut and they’re shared with normal cells. There’s one area where I think it has the most promise is calreticulin because the mutation in calreticulin isn’t a tiny little mutation. It’s a mutation that causes a whole new end of the protein that doesn’t exist in the body otherwise.

And some of the calreticulin actually gets onto the surface of the cells so it’s displayed to the immune system, and so this is an area where I think there’s some promise for CAR-T cells to target those calreticulin mutant cells. There may be other targets as well and I think we’ll learn as time goes along. People are trying to target molecule CD123 which is expressed on certain abnormal stem cells. The problem is it’s expressed at relatively low levels on those cells. It’s also expressed on normal cells and it’s expressed at higher levels on much more common cells. So, it makes it a somewhat imperfect target, and also difficult from a drug standpoint because there’s a lot of people wearing the same mask, only some of them you want to kill. So, it can be a problem.

Andrew:
Okay. You have quite the analogies. But, I’m just gonna ask you about two more questions and then we’re gonna have to go. This came in from Linda who says, “I am CALR positive and I have many symptoms. What causes vision symptoms for me and migraines? Can that be tracked to the CALR somehow?”

Dr. Scandura:
It’s common in a subset of people with MPNs. Sometimes it’s linked to the platelets themselves, to the white blood cell count, so I would certainly unless there’s a reason not to try aspirin, that’s something that can help with patients. It may also be an indication for cytoreductive therapy, so actually trying to lower the blood counts. I don’t know exactly what disease that Linda has, but it’s one that I would think is a symptom that would warrant therapy because it can be quite bothersome.

The vision changes is something that may be related to the migraines, but it’s also something that might prompt a visit to an ophthalmologist so they can actually look at the blood vessels in the back of the eye and sometimes what happens is you can have a little irritation of the blood vessels or even clots in those blood vessels and that’s something that would definitely trigger a change or new therapy.

Andrew:
Dr. Scandura, our audience is saying, “Please, one more question, one more question.” So, if I can a couple more. Philip said, “Is iron deficiency a new normal if you have PV and you’ll, therefore, have weakness, fatigue, maybe even some cognitive issues because of anemia as well?”

Dr. Scandura:
Yeah, so I sort of fall in the camp, as I mentioned before, there’s some debate in the field and I sort of fall in the camp that if you’re getting symptoms from iron deficiency, it might suggest that something other that phlebotomy could be beneficial or could relieve that symptom. Everybody, if you take enough blood out of them, is going to become iron deficient and, in fact, most people diagnosed with polycythemia vera, if tested, actually meet the criteria for iron deficiency, not because they actually don’t have enough iron in their body, but because all of the available iron is soaked up in making red blood cells. Red blood cells are red because of iron.

So, if you think about all of the iron in your body and all of the places it’s used for metabolism and everything else, there’s a lot of enzymes that actually use iron as part of their catalytic site. A large proportion of all of the iron in our body goes to making red blood cells. In polycythemia vera, that regulation is completely abnormal and you end up just making a lot of red blood cells that aren’t needed and it soaks up all the iron. Then when you start doing phlebotomy, you’re taking all of that extra iron and you’re taking it out, but the bone marrow still wants to try to make red blood cells. So, it continues to scavenge as much of the iron as it can.

So, iron deficiency is pretty common and if you need a lot of phlebotomies it’s universal. Some patients, in my experience, meet all the criteria for severe iron deficiency have very little in the way of symptoms. Others meet criteria for mild iron deficiency, but they’re quite symptomatic. And so, in those instances, you need to individualize a little bit. At least give a try to a different therapy and allow the iron stores to normalize and see if that improves the symptoms.

Andrew:
Okay. You used the word individualize and that’s where I wanted to wrap up. So, you alluded to earlier, that you were encouraged by new medicines coming for MPNs and you have your whiteboard behind you where you’re charting things and I hope, Joe, coming up with a cure of tomorrow for all of us. How encouraged are you in the near term and the longer term for beating back or even curing these diseases?

Dr. Scandura:
I think we’re gonna cure these diseases, I do. I don’t know if it’s gonna be this year, but I think that the number of tools we have to understand how these diseases work and the number of new drugs that are being developed that have real promise, like real mechanistic reasons why they should work, I think is going to yield, reap rewards over time. People have heard this for a long time. The war on cancer has been going on for a long time, but I think we didn’t have the tools that we have now for that entire duration. Right now, we can sequence a genome in a week of a person. Now, do you need to do that? No, but it allows you to get a level of information that was in the past, really just fantasy world, science fiction, and now it can be done on a routine basis.
There are, virtually all of our patients, have sequencing for 40 plus genes. It allows us to know a little bit more about what their risks are, and also gives us a spectrum of targets to start hitting. There’s models that are better than what we’ve had in the past for many of the cancers that have been targeted. Breast cancer models, you know, there’s some decent breast cancer models, but they’re very complex tumors. MPNs, for better or for worse, if you look at the spectrum of genetic complexity, they’re really pretty simple meaning that they have one to half a dozen mutations.

Now mutations aren’t the whole story, but it’s a good starting point and if you only have maybe 10, 15 genes that are currently mutated in a disease, it’s trackable. You can figure this out. You can figure out what they’re doing to allow them to win and once you know that, you start figuring out how to beat them back. And so, I think that their time is gonna come. I don’t know if it’s this year as I said, but I think it’s definitely doable.

You know, CML, when I was a kid, when I was in medical school my parents had a good friend with CML who died with CML. Now, it just wouldn’t have happened. He would have been fine, but he was on, for a long time, ineffective therapy, transformed to an acute leukemia as they all did, and then it becomes really untreatable. And now we have these magical drugs, semi-magical drugs, that for the vast majority of people just – it’s a pill a day. It’s amazing.

Andrew:
Well, you’ve got that work on your whiteboard and in the lab and your colleagues around the world and you had told me before the program started that you all are collaborating better now than ever before. So, Dr. Joseph Scandura from Weill Cornell in New York City, thanks for what you do as a physician-scientist and thanks for spending time with us today.

Dr. Scandura:
It was my pleasure and thanks for helping patients through what is a difficult ordeal I think in terms of adjusting to a diagnosis and getting information.

Andrew:
Well, thank you for joining us and Weill Cornell folks have been great and send our best to Dr. Silver too. He’s in his 90s and still going strong.

Dr. Scandura:
Yeah, he’s traveling today.

Andrew:
Thank you so much for being with us for this Patient Empower Network program. Thanks to Incyte for helping fund our series. We appreciate their commitment to the MPN community and as always, I just sign off by saying I’m Andrew Schorr and remember, knowledge can be the best medicine of all.

Patient Empowerment Photo Contest!

The Patient Empowerment Network is now accepting entries for our Patient Empowerment Photo Contest!

We’re looking for compelling, surprising, and stirring photographs that share a view into the patient and care partner world.Photos may be submitted to three categories:

  1. What Empowerment Means to You
  2. Family and Care Partner Experience
  3. A Day in the Life/Behind the Scenes of the Patient Journey

You may enter as many photos per category as you would like and the top entry in each category will receive a prize!


Submit your entries by posting your photo on social media with the hashtag #PENBeEmpowered or by emailing admin@powerfulpatients.org by December 21, 2018 at 11:59 PM. Good luck!

 

Patient Cafe® CLL – October 2018

Dealing with a Mid-Life CLL Diagnosis

Patient Cafe® CLL – October 2018 from Patient Empowerment Network on Vimeo.

Four Chronic Lymphocytic Leukemia (CLL) patients got together to share their story and advice on dealing with a mid-life diagnosis, and how that can affect your personal and professional life.


Transcript:

Esther Schorr:
Hi there. Thank you for joining our Patient Cafe today sponsored by the Patient Empowerment Network. I’m Esther Schorr, and today I’m meeting virtually with a group of CLL patients, chronic lymphocytic leukemia, who are all facing this diagnosis during their middle years. So of course there’s no really good time to be diagnosed with something serious or diagnosed at all, and it’s never easy and it’s never welcome, but in our middle years the career ball, your personal life direction, the people that you indirect with, the relationships you have are already pretty well in progress and a diagnosis can feel as though personal and professional life kind of had a monkey wrench thrown into it and that your plans for life could be derailed.

Our guests today are going to share their stories and advice about how they’ve been able to deal with a midlife diagnosis. So just before we start I want you to know that this conversation is never, would not be a replacement for medical care, medical advice. Each patient’s situation is unique, so I really encourage you to consult your own doctor, your own medical team for the treatment that’s right for you.

So first of all I just wanted to tell you a little bit of where I fit into this conversation. My husband, Andrew, who you’re going to meet in a second, was diagnosed with CLL in his mid-forties, and at the time we had two small children.

Also, we were in the middle of growing a fledgling business that then became what we do now in educating patients. And we were devastated. It was scary. We didn’t know what the complications long term were, we even wanted to have a third child at the time, and certainly, like most people, we didn’t know anything about CLL. We didn’t know. And the word “leukemia” was very frightening. We were very lucky at the time. We had supportive family and friends, and we found great medical care through networking with other people on the internet, through online support groups, etc. And ultimately Andrew got through a clinical trial, went into it, went through the trial and had a long remission, and we’re very, very thankful for that.

As a care partner, I will tell you it’s taken years of ups and downs for me emotionally to come to terms with the fact that we can’t really live our life based on what‑ifs.

And we’ve gone on together with our friends, our family, and we just live our life. We now live in southern California near the beach with our dog, and we have three grown kids who are very supportive, and‑‑but we’ve learned a lot along the way. And so I’m hoping that this discussion will help those of you that may be in similar circumstance to kind of come to a place where you can move on with your life and feel empowered. Is that’s my story. I want to have each of our guests introduce themselves. So why don’t start. Jeff, Jeff Folloder, why don’t you start.

Jeff Folloder:
Hi. I’m Jeff Folloder from Katy, Texas, which is just outside of Houston. I am a CLL patient, and I am also a Patient Power advocate, champion, evangelist, pick one of the terms, whichever one you’re comfortable with. I was diagnosed at 46 years of age.

I absolutely, positively was not expecting to hear my doctor say something’s wrong and you need to go see a specialist. Walked into the specialist’s office, saw a bunch of old, sick people in there, said this isn’t me, and the next day I was told, yes, it is. So my diagnosis did absolutely come as something of a huge shock. It was like a sucker punch in the gut, and it took me a bit of time to figure out has comes next.

I was very fortunate to get connected with some folks here in Houston who got me enrolled in a clinical trial after two, two and a half years of watch and wait. I got six and a half years of rock solid remission out of my clinical trial. This past July I have recently relapsed, and I’m looking at it right now quite frankly as no big deal.

I’ll get treated when it’s time to get treated. In the meantime, I’m driving all over the country, I’m doing all kinds of things. I’m living life to the fullest, and it’s actually okay to take a nap.

Esther Schorr:
Thanks, Jeff, that’s perfect, and we’ll talk more about that journey for you in a minute.

Jeff Folloder:
Absolutely.

Esther Schorr:
Let’s try the other person, Andrew, and then we’ll hit Michelle and Jeff.

Andrew Schorr:
Esther, thank you for hosting this program. So you recall vividly I had a routine blood test at age 45, and the doctor initially said when he tested my blood, oh, you’re probably fine because I had been getting some nosebleeds, and then he called me, and he said you’re not fine. What is it? Leukemia. What is leukemia? I wasn’t even sure it was a cancer. And I also didn’t understand the difference between acute leukemia and chronic leukemia. And so what knowing I’d heard somewhat about acute leukemia then, Esther, you and I, remember, we walked in the park in a sunny spring afternoon near Seattle, and I thought I was dead. And I was saying at 45, we have two kids, hopefully you’ll be well provided for, and I had life insurance. Is that it?

Well, fortunately, it hasn’t worked out that way, and I got a long remission, pretty long, Jeff, 17 years, actually and then needed CLL treatment again many months ago, and that’s worked well. So just like what Jeff said, knocking it back, going on with my life. We had a third child, but when I was first diagnosed I thought it was over, but now looking back I know it was really just the beginning, but maybe seeing life a little differently but living.

Esther Schorr:
You thank you. Thank you for that, Andrew. Michelle, tell us a little bit about you.

Michele Nadeem-Baker:
Hi. I’m Michele Nadeem-Baker, and I’m a Patient Power advocate as well and a Patient Power patient reporter. And I have to say, as Jeff had mentioned, I was in shock, absolute shock, no awe, but in shock when I was told that I had CLL. My PCP like everyone else’s had said that my white blood counts were a bit off, told me to see a hematologist, and I was very naive not realizing hematologists generally went along with oncology.

Went to the local medical center when I lived in Miami and was not told I had CLL, and then I was called back in for when some other test results came in, the flow cytometry came in, which I now know but at the time had no clue what that meant, had no clue what the doctor was talking about. He didn’t even‑‑he said I had the C word. He didn’t even say cancer. And then he said CLL. I had to ask what that meant.

And that’s why I’ve been such an advocate for communicating better for patients because I was a bit dumbfounded as well as in shock. He had no information to give me, and I have since tried to learn a lot and become an advocate for other patients. Andrew is the first person I met with CLL. I reached right out to him, but it was very tough.

I had been married at that point for only two years to my now husband, and it was a real, real shock. My career went into a tumble, a turmoil, and it got put on hold for a while. So I was in watch and wait for about three years. In that time I moved back to Boston, so I could be seen at Dana‑Farber. And as both Jeff and Andrew said, life does go on. You just‑‑you have to get into kind of a new step and a new rhythm, but life does go on thankfully and thanks to all the research that’s been going on.

And I’m still on a clinical trial. Still in remission. Fingers crossed that will continue. And I’m happy to chat about anything that will help.

Esther Schorr:
Right. We’ll have a lot to talk about, I think. Thank you, Michelle. And the other Jeff, tell us a little bit about where you’re from and where you’re at now.

Jeff Brochstein:
Will do, Esther. Thanks again for having me. Really, my story follows much of the same path. Diagnosed at a fairly young age, 38 years old. I discovered a small lymph node in my neck while I was washing up one Sunday night back in late 2012 and got it checked out and couple months later high white blood cell count, and another high white blood cell count when I was tested again, and I was diagnosed. And really from there I just buried myself in just doing all the research and all the data gathering that I could.

Maybe about three, four months after diagnosis I discovered Patient Power. I found Andrew. I gradually started corresponding with him. From that point on, the next four and a half years I was in watch and wait until probably late 2016, early 2017. Reached out to Andrew again at that point. We had a conversation about FCR, which my doctors here in Atlanta had been talking to me about. Decided to go to MD Anderson after seeing some of the videos on Patient Power of Dr. Keating, Dr. Thompson. Went there to see actually Dr. Thompson who had mentioned ibrutinib and some of the other targeted therapies that had been just approved for frontline. And came back to Atlanta and my doctor and I kind of came to the conclusion that maybe starting with one of the targeted therapies was probably best me being unmutated.

And started ibrutinib March 2017 and lymph nodes went away after a week and kind of been in remission pretty much ever since and everything’s going well.

Esther Schorr:
Thank you, Jeff. And all of you, there are some recurrent themes here that we’ll talk about, but obviously this whole idea of coming into the middle of your life when a lot of things were already in play was something that you had to pretty quickly say, okay, what am I dealing with and then figure out how do you continue with what you were already doing and how does it fit in.

So I want to dig into that a little bit more, and I’d like to start with you, Michelle. And tell me if I’m wrong, but my understanding is that when you were first diagnosed you were really in a pretty high‑level executive position in PR and communications, and how did you cope with the diagnosis in the middle of a very busy professional life?

Michele Nadeem-Baker:
It was not easy, and that part still isn’t easy. I’ve been trying to still come to terms years later with that. I was at a height of my career in a dream job, and I knew that I could no longer stay in that job because it meant staying in Florida, and I needed to move back home where my family was and my husband was. We had a long‑distance marriage because of career. It made me realize what’s really important in life, and that’s to be with family, but I was able to then continue using parts of my career in other ways and to help, as Andrew did. You’re doing very similar things yet now you’re doing it to help patients, and that’s what I’ve been trying to do. You’re a great mentor, Andrew. And so it, yes, it was very difficult when it comes in terms of that and as well as income and being used to being a high income earner and then not having that.

Esther Schorr:
So can you share how you made that transition? It sounds like you moved closer to family.

Michele Nadeem-Baker:
I did.

Esther Schorr:
And career‑wise what helped you make that transition?

Michele Nadeem-Baker:
I had to give up my job and my career. And I was well known in Florida, and I moved back up to Boston. I needed to remake connections from when I lived and worked here. And I’ve been consulting ever since versus within a company and a full‑time job. So trying to use what I do best, just communicate and go and help others. And what’s been happening is I found that it’s been mostly in life sciences and related fields.

Esther Schorr:
Okay. Thank you. You know, you mentioned Andrew. Andrew, did you want to speak a little bit about that transition that you had to make because we were at the time sort of building‑‑well, sort of. We were building a business and a family at the same time.

Can you share a little bit about what it took for you to make the change that you did?

Andrew Schorr:
Sure. Well, I think‑‑we were fortunate. We were already working in health communications. Michelle has sort of made that transition, and Jeff too actually is spending a lot of time doing that. So you kind of‑‑for us, you know, Esther, you and I think accelerated in what we were doing. I think for Jeff and Michelle they’ve sort of joined in where you can leverage what you’re learning as a patient to help others, and that’s very satisfying. And fortunately now with the internet we can to some degree do it on our schedule.

So sometime we’re tired. Sometime we’re distracted‑‑not distracted, that’s not fair, but we have doctor visits. We have bone marrow biopsies. We have other things. I get IVIG, monthly infusions. So how do you juggle all that?

And I think we learned to do that. At least that’s what I’ve done, and I think it’s been satisfying that we can communicate with others, and it’s part of who we are. Never wanted the diagnosis of CLL, no, no, no, but if you have it how can you go forward and do that? And I know both Jeffs are involved in helping other patients as Michelle is too, so that’s part of it.

Esther Schorr:
Thank you. So, Jeffs, any additional comments or points you want to make about this?

Jeff Brochstein:
As someone who is probably I think out of everybody here who is maybe less in a patient advocacy role, I mean, I’ve done it a few times, I’m always open to who, you know, Andrew sends me in terms of young people who are diagnosed who want to speak to someone with whom they can share experiences with, you know. I’m an IT projects manager. It’s not necessarily boiler room type work but it’s still, it’s pretty fast paced.

It’s pretty intense at the times. One thing that I’ve really experienced in terms of just first firsthand trying to deal with having CLL and making all the appointments, the bone marrow biopsies, the routine blood work, you know, I tend to‑‑I don’t openly communicate my condition to everyone at work, but I’ve been lucky and I’ve been blessed to have pretty decent managers who I directly reported to ever since diagnosis, and they’ve been just very accommodating and understanding. And in some regard they have to be, but I’ve been lucky enough to find that in the workplace, and that’s been really, really great.

Esther Schorr:
Okay. And actually that’s a great segue because the next thing I was going to ask about was how each you have handled communication with family and friends about the diagnosis. That’s a very personal thing. There are some people who are way out there and, gee, we don’t know anybody like that, but it’s a really personal thing. So maybe Jeff, Jeff Folloder, how did you handle that initially, and has that changed over time?

Jeff Folloder:
Well, I never hid my cancer diagnosis from anyone. I believe in the very first Patient Power event that I did I talked about the mistake that I made with my cancer diagnosis. I told my family. I told my wife. I told my daughters. I told my friends. But I kind of sort of forgot to tell my daughters that my CLL wasn’t considered hereditary, and my daughters kind of sort of flipped out for a significant period of time until I learned, wow, I should probably let them know what exactly is going on so that they can stop worrying a little bit.

And I did. And so now I make sure that people understand what it is that I think they need to hear. I don’t tell everyone the gory details of my CLL experience. Some people I tell, yes, I’ve got cancer. I’m a survivor, or I’m in remission, or I’ve relapsed. And the people I care about, I make sure they understand what’s really going on and how it affects me.

And at this point some almost nine years after diagnosis, and I know this is going to sound very counterintuitive, cancer gave me an awful lot of opportunity. I would have not had the ability to pull the hand break up on my life and reprioritize everything without a cancer diagnosis. I was moving too fast. Concentrating on the wrong things. Spending my energy on the wrong things. Now I focus on the right things.

And as Andrew is fond of saying, I’ve learned how to live well, and that’s because I’ve learned from everyone involved with Patient Power.

Esther Schorr:
Wow. Well, thank you. Michelle, Jeff B, Andrew, other commentary about how you communicated or chose not to communicate?

Michele Nadeem-Baker:
I did the opposite. Because‑‑probably because my career included crisis communications I was afraid if once I let out the info it would be career suicide, which is a very sad thought when you think of society. But instead now I’m trying to change that, that thought has that’s out there, that you still can be viable when you have a cancer diagnosis, which everyone here is proof of. But I was very afraid of that, that that would ruin my career.

As a matter of fact, I did not come, you know, out until I started in the infusion room and reported for Patient Power from it each time.

I was in infusion with the FCR part of my trial. So it dawned on me that in the past I had worked with the American Cancer Society and convinced people to come out about their cancer and explain to other patients. And I felt somewhat like a hypocrite that I did not, and I realized it was time. It was really time to do that. And it wasn’t only about me. It was about others as well. And that really helped empower me a lot.

And also as Jeff has said and I was saying before, it really does help you prioritize what is right, the right things to be spending your time on because I was on the hamster wheel of career and never sleeping, and this forced me, I had to. And as you said, naps aren’t a bad thing. I had to learn that, too. So it does help in certain ways, although it’s not a great way to have to learn the lesson. It is what we have, so you have to make lemonade out of lemon s, and I think that’s what all of us here have been doing.

Esther Schorr:
Thank you. And Jeff B?

Jeff Brochstein:
When I was first diagnosed, there were a handful of people, friends and family, who I told. And I can honestly say and somewhat brutally say this, there were some people that swept it under the rug because it’s a chronic condition. I didn’t need treatment right away. Many of them didn’t understand that, it being cancer, because they’re used to acute cancers, tumor‑based cancers that you have to attack immediately.

You know, I had other people who kind of buried me already because I told them cancer, and they stopped reaching out to me. And even up until today I still get a rare text message from some of these folks asking me, not in these words, but they pretty much ask me if I’m still alive. And I’ve kind of put them out of my life.

And there were some who were understanding, who actually read up on the things that I had sent them about CLL and how it’s chronic and how there’s all these emerging therapies on it.

So really for about a couple years after that, to kind of going to what Michelle was saying I was kind of in the closet about it. And then when my lymph nodes in my neck became a little more apparent and I really couldn’t explain it away all that easy, I came out a little bit more about it. And, you know, like I said, there have been people who have been very understanding. There have been people who have told me, well, it’s chronic and you’re taking a pill for it now so it can’t be that bad. And there’s been other people who have been like, oh, my god, cancer, you’re still alive. And, you know.

Esther Schorr:
I’m going to go a little bit out on a limb, Jeff. If I understood correctly you were diagnosed‑‑weren’t you diagnosed when you were still dating your wife? Is that?

Jeff Brochstein:
Her and I had just gotten engaged. We got married last year. She’s actually expecting, by the way, late February.

Jeff Folloder:
Congratulations.

Esther Schorr:
Congratulations.

Jeff Brochstein:
We’re having a boy.

Esther Schorr:
Oh, that’s so exciting.

Jeff Brochstein:
Thank you.

Esther Schorr:
And I bring that up because the other question I kind of wanted to explore with all of you is how did your diagnosis, if you’re willing to share, impact your relationship with your significant other or your spouse, you know, the person that’s closest to you? Was that different than dealing with other people? Anybody want to…

Jeff Brochstein:
I can start that off. You guys met Olga at ASH last year. If anything it’s solidified us. She’s a fire brand about it. She’s my rock. I really couldn’t make it through this without her. She’s been vital in terms of just my survival and us just having a happy life together. And we’ve been challenged by a lot of things. This is probably one of the biggest challenges, and it’s just made us better. So even under those circumstances, so.

Andrew Schorr:
Esther, I think I should jump in.

Esther Schorr:
Go ahead.

Andrew Schorr:
And you can tell us. So, you know, I was sort of more clinical. What do I have? What do we do, etc.? And as I said earlier, I thought my life was over, was relieved to find out it wasn’t. But all this was coming down on you too, and I don’t know to what extent you really shared how you were feeling because it definitely affects. We were‑‑you were a young woman. Esther’s seven years younger than I am, so you were younger. We had the idea‑‑we had two little kids, and we had the dream of having a third, so you might share what you were thinking.

Esther Schorr:
Sure. There was never‑‑I think the hardest person to share your diagnosis with was you, and my feelings about your diagnosis, the hardest one was to share that with you. And what was most helpful to me because I had loads of fears was to share it with other people who loved you as much, loved you in their own way as much as I loved you as my spouse.

So, you know, I think if anything it just solidified my dedication to our relationship and to figuring out the best way to support you emotionally and physically and professionally. So, yeah, you know, all of you have been talking about sort of there’s this weird silver lining of having a diagnosis of something. The silver lining is you look at what you’re really grateful for. And that’s really what it did for me as a care partner to you, Andrew. To say, okay, this ain’t good, but what’s the good stuff that we can do if we work together, and that’s really what’s happened.

Andrew Schorr:
We should mention that we began couples therapy.

Esther Schorr:
That’s right. We did, and that was very, very helpful so that I was able to communicate with you openly and you weren’t afraid to tell me when you had feelings, whether they were of fear or trepidation or not knowing how I was going to react. It took a long time for us to figure that out. I think we have.

Jeff Folloder:
One of the interesting things that happened in my particular journey, I got the diagnosis and of course everyone’s freaking out in the house. My wife is freaking out in the house, and she was being somewhat stoic about it and really didn’t know quite how to deal with things.

When the first doctor that I had seen that had given me the diagnosis described the treatment plan he wanted to do, I did a typical type A personality thing and said stop, went and talked with Dr. Google for an awful long time and decided that I needed a second opinion right then and there. And one of the watershed moments of my treatment journey was when we were sitting in that clinic room at MD Anderson when my doctor, not me, but to my wife walked over, picked her up out of the chair and gave her a bear hug to let her know that she’s a part of this process as well. It’s not just about me. And that was sort of a little bit of a release from the pressure valve because this is very much a team journey. I can’t even begin to imagine someone with CLL going through it by themselves, so I am extremely grateful to my beautiful bride of 31 years, and I could not have gotten to this day without her, period.

Esther Schorr:
Thank you. Michelle, did you have something you wanted to add on this?

Michele Nadeem-Baker:
Yes. A few things in that we waited until recently for couples therapy. I would suggest that it be started sooner, as you and Andrew did, because it would have been very, very helpful.

In the beginning I tried to protect my husband from things, and as I was living in Florida and he was in Massachusetts I considered not even telling him. In the first 24 hours, you know, your mind does crazy things. He was not with me because I didn’t even know there was anything wrong with me when I was told, and I even considered for him ending the marriage because it wasn’t fair to him. This all went through‑‑crazy things go through your mind. So I didn’t think it was fair to him, and his first wife had cancer. So the mind goes to crazy places.

Thankfully I did not. I shared, and he has been‑‑he has been by my side every step of the way probably much to his own physical health detriment, which is on track now. But he sacrificed a lot. He has been with me for every appointment. Every treatment he was by my side, every bone marrow biopsy. And thanks to him they redid some of mi tests which showed my genetic markers which they were not aware of as to how serious my CLL was.

He had read about that things could mutate or that tests only test a certain percentage of your blood and that perhaps it was different, and my symptoms were becoming more apparent that I was getting closer to treatment even though other things, other numbers did not show that through my FISH tests, my flow cytometry test. So he pushed them to redo the tests, and lo and behold, I was 11q, and they didn’t realize that. And IGHV they had known unmutated, but they didn’t realize the 11q. So I do suggest that people if they start seeing certain symptoms they do push for certain things, but my husband did that. I didn’t. I would not have pushed for that myself, so thank goodness I had a partner along the way, and I don’t think I could have done everything I did to be here today.

Esther Schorr:
If I’m reading all of you correctly, the relationship with someone else, a care partner, a caregiver, was additive for you.

Jeff Folloder:
Absolutely.

Jeff Brochstein:
Absolutely.

Esther Schorr:
And open communication.

Michele Nadeem-Baker:
Absolutely.

Esther Schorr:
Yeah. Because I know that we, Andrew and I, have spoken with patients where they really were reticent to share with the people closest to them for fear of scaring them, scaring them away, not knowing how they were going to react, so that’s a really important point.

The other thing I wanted to ask you all about was a few of you referenced having a wonderful medical team and finding a specialist and educating yourself. So finding the right doctor, educating yourself about the disease, what did that do for you? I mean, did it help you with just the emotional part of it? Did it help you feel more in control? Why was that a good thing?

Andrew Schorr:
Could I start, Esther?

Esther Schorr:
Yes.

Andrew Schorr:
So, first of all, Jeff Folloder mentioned about the doctor giving a hug and maybe it was probably Dr. Keating, but other doctors, Dr. Kipps down in San Diego gives hugs too.

I was‑‑put my hand out, and he said, no, I want to give you a hug, and he’s done that with you too, as Dr. Keating has. What it did by getting the right doctor is I think gave me, and I think you too, confidence. And this ties in to Jeff Brochstein as well. Confidence to go on with your life and at that age, earlier age, said go ahead and father a child, which is a big deal, right? That’s not just a short‑term thing. And I’d be interested in what Jeff Brochstein says, but I know you and I, Dr. Keating gave a hug and said, go have your baby, which here we were in a major cancer center. Go have your baby.

Esther Schorr:
And he’s 21 now.

Andrew Schorr:
Yeah, he’s 21 and he drives us crazy and we love him, but he’s our thirties, he’s our miracle baby. And, Jeff, you and Olga having the confidence to do that.

Jeff Brochstein:
Well, Andrew, a couple, I mean, we’d been trying for a while, and a couple of years ago a doctor told Olga and I that we had a better, almost a better shot of hitting the Powerball than we did of conceiving, and it kind of happened on its own a few months ago.

Esther Schorr:
That’s great.

Jeff Brochstein:
So it’s really a miracle. You know, I think what really found a comfortable place for me is I found a community oncologist who did have a specialty in hematology though he wasn’t a research specialist who has a great bedside manner, and he was also very cool with me going to MD Anderson and talking to Dr. Thompson and talking to a research specialist, and that gave me a good counterbalance. That gave me that second opinion. I could weigh that with what Dr. Stephen Szabo here at Emory was recommending, and I came up with what was best for me.

And Olga‑‑and us getting pregnant was just all the more of a present on top of that, so life is good in that regard.

Esther Schorr:
Any other comments on that? Jeff?

Jeff Folloder:
I’d like to chime in just a little bit. Andrew had mentioned Dr. Keating and his bear hugs and all that wonderful you stuff. One of our very first appointments with Dr. Keating, I felt the need, as many new patients do, to sort of like unload the guilt, all the things that I was doing that may or may not be exactly healthy, so it was sort of like a confessional.

And I can remember telling Dr. Keating, okay, you need to know that I smoke an occasional cigar, maybe an occasional briar pipe. And he asked me, well, how often do you smoke, and I said, ah, three or four times a month. And he said, okay. And I didn’t quite understand what okay meant. And then I kind of confessed, okay, you need to understand that most evenings I have a whiskey or two.

And he asked me what type of whiskey I drank, and he complimented me on my taste. And he actually stopped me and said, I am here to help you live a good life, not make you miserable. That’s where we were focused on. My first doctor just wanted to start treatment. Dr. Keating wanted me to live well, so instead of just getting a, quote/unquote, gold standard of treatment, Dr. Keating was focused on getting me the best treatment. So that was sort of my start to living well.

Esther Schorr:
Yeah. That’s how we felt about finding the right team for you, Andrew, was that. It’s what’s the quality of life and what are your priorities in your life and will your medical team‑‑is that what they’re focused on.

Andrew Schorr:
Right. You know, I make one comment about that, Esther, and I want to hear what Michelle says too.

So we’re blessed now with a range of‑‑a whole array of treatments, Jeff, you recently, Jeff Folloder led a town meeting in Jeff Brochstein’s home town recently where you spoke about that, that there are more treatments either approved or in research than ever before. So part of it is what’s your situation, and Michelle talked about unmutated and 11q, what treatment lines up with that clinically, but also what are your goals? Somebody who has FCR might be able to stop treatment after six months if it’s right for them and if it works for them. Some people may‑‑there’s some idea with Venclexta combined with Gazyva, maybe you’ll be able to stop after two years. With ibrutinib you’re taking it long term.

So what’s right for you? And I think all of us need to take a look at our lives, have a conversation with a knowledgeable doctor and state our goals. What are our personal goals for what works for us. Michelle, I mean, you may have things you want to add too.

Michele Nadeem-Baker:
Certainly. So when I went on the clinical trial I’m on, which some people know as IFCR, ibrutinib and FCR, I did not know at the time nor do I think they knew long‑term what would happen, but here it is. I can’t believe it. It’s three years this month I’ve been on it. I’ve been on ibrutinib for three years now, and I will be indefinitely until either it stops working or something better comes along, and I am able to live life. I am looking of course, as we all are, for a cure someday, and I’m still not MRD negative. That would be wonderful. That would be great. But right now I’m holding steady, and that’s a good thing. So my goal is to be able to live life as healthy as I can, and that’s what this is doing right now.

Esther Schorr:
Great. Well, so, I’m going to switch gears a little bit, and I want to ask you all a question. Have any of you dealt with a situation where you tell somebody what’s going on for you and they say, well, you don’t look sick. What do you say? What do you do when somebody says that to you?

Jeff Folloder:
A lot of smiling and nodding. It is a very common response. I think the two most common responses that we as CLL patients hear is, one, you don’t look sick, or two, oh, you’ve got the good cancer. Neither of these are acceptable. Yeah, I look good because I work at it. The whole concept of you don’t look sick, well, there’s a difference between looking sick and feeling sick, and as a CLL patient I take as much charge of my physical well‑being as possible. Before I was diagnosed with cancer I was a couch potato. I never exercised.

I didn’t need to. I was pretty lethargic and sedentary. Now I’m an avid power walker knocking out between 30 and 35 miles every week. I do it pretty fast, too. I’m trying to maintain my weight, and I’m trying to maintain my energy level. So, no, I don’t look sick. Sometimes I feel sick. I just did a week and a half on the road. I missed a bunch of naps. I’m a little tired. Actually, I’m a lot tired, and I’m looking forward to a nap this afternoon. And I’m going to take one, and it’s okay.

But this is part of my new normal. My new normal is the way I feel doesn’t necessarily show. And my wife understands that. My family understands that. The people close to me understand that. My doctors understand that. So if people don’t get it, that’s their problem, not mine.

Esther Schorr:
Any other commentary on that? I think that’s a great, very positive way of looking at it.

Michele Nadeem-Baker:
I have to say that I’m trying to look at the positives about people saying you don’t look like you have cancer. In other words, I feel like they’re trying to convince me I don’t have it because I don’t look it, but I guess I’d rather not look it than look it. That’s what I keep trying to tell myself. And as Jeff just said, I do smile a lot, it’s like, oh, yeah, you really don’t know what you’re talking about, but thank you. I know you mean it to be good and be nice. I also know people don’t know what to say. So I try to put the little sarcastic bubble aside and just try to think of that.

But as Jeff said you do have to‑‑you have to take charge. And I continue to, as Jeff was saying, I continue to work out in the way I do throughout even infusion. Continue to go to the gym and use weights and do cardio. And when the weather’s good enough up here, which it’s now turning to not be, do whatever I can outside as well as in the gym because you feel better.

And that is one way I felt I could take control when everything else was out of control health‑wise. So it also helped me in that way, in that respect as well as to be healthier physically. So it’s very important, I’d say.

Esther Schorr:
And really what you guys are all talking about is how do you stay empowered and positive. And for you, Jeff, it’s everything from power walking to taking naps, and for you, Michelle, it’s going to the gym and being an advocate. And Jeff, Jeff other Jeff, you’ve talked about some of the things that you do. And you’re going to be a lot busier with a baby in the house.

Jeff Brochstein:
That’s right.

Esther Schorr:
Anything else that helps you to stay positive in all of this?

Jeff Brochstein:
You know, I was always active for I don’t know 20 years before I was diagnosed. I’ve always lifted weights, done Cross Fit in recent years. So I spoke about this earlier, and this really kind of repeats some of the stuff that Michelle and Jeff were saying.

I’ve never appeared sick. I’ve always been physically fit. There was a time for about two years since I was diagnosed that I had some lymph nodes that went away once I started the ibrutinib. People never associated me with some sort of chronic or acute illness. And when I’ve told them what I have and I’ve told them about the condition, you know, I’ve also followed up with just trying to create awareness around this, send them some links, sending them some videos. Maybe sending them the original video I did at ASH last year, just to really create awareness around it. And it’s really up to them if they want to absorb it, on Jeff’s point.

Esther Schorr:
So, you know, I think to kind of wrap up all the things we’ve talked about, what advice do each of you have that might help someone who is facing a diagnosis of CLL in midlife? What lessons have you learned along the way that helped you face it?

You know, just kind of giving somebody advice, what would that advice be? And maybe, Andrew, do you want to start?

Andrew Schorr:
Yeah. I will say first given what we know about CLL and the range of things going on how, your life is not over. I thought my life was over. Here we are. I was diagnosed in 1996, or 22 years. I mean, I had no idea that I’d make it 22 months, right? And if you read some of the old articles and stuff you’d say, oh, life expectancy is not very long. So first of all, you’re going to live a long life and thank god for the medical research and the array of things that are available.

And I think Michelle said it too, right now, she’s been in a trial, she continues to take the ibrutinib, maybe there’ll be something else that she’ll need at some time and we’re confident that there will be. So, Esther, you remember that there was a guiding light, a patient advocate in CLL years ago when I was diagnosed, and she gave us two words as advice.

Chill out. And so that’s what I’d say. I’d say chill out. I don’t mean to be harsh. There’s a lot of grieving that goes with a diagnosis. I’ve probably said it to my friend Jeff Brochstein when we met in Atlanta last year, to you and Olga, but I would say that, and that’s based on evidence. That I’m living longer and people living a long time. And we get an eye into the research going on, and there’s a lot. So I think‑‑it’s not perfect. There are side effects, there are expenses, and there are course corrections in your head as well as in your life, but you’re going to live a long time. Believe me.

Esther Schorr:
Nice. Jeff B, any advice you would give to someone?

Jeff Brochstein:
Really along the same lines that Andrew just spoke and what Jeff had mentioned when he gave his intro. When you get CLL, when you get a diagnosis of this kind, god forbid, but when it happens during these years just take the what‑ifs out of your life. Take the projection out of your life because that will just make you grow worrisome and grow older and grow grayer. You really have to‑‑just to take things by the day. Just do your best early on to do as much research as you can about it. Try to see a specialist early on. I think that would helped me out my first couple of years if I would have gone to see a specialist as well as have somebody local and community‑based where I lived.

Reach out to people like Andrew, to groups like Patient Power. It’s a different world now than it was 10 years ago in terms of technology and information that’s out there. And I think most of all just keep tabs on the treatment landscape that’s changing every month it seems like or every six months something is approved, something new, something better, something not chemo related. Really, just pay attention to those things and you’ll be okay.

Esther Schorr:
Thank you. Jeff?

Jeff Folloder:
I would tell everyone that is recently diagnosed with CLL to do a couple of things. First, take a deep breath. I guess during pregnancy they would call that the cleansing breath, but you’re going to need to do a couple of them. So remember, that, Jeff, cleansing breaths.

Second, everyone has said it again and again and again. See a CLL specialist. You don’t have to see the specialist regularly, but you need to get a CLL specialist as part of your team. The landscape of medicine is changing not just monthly. It’s changing weekly, daily and hourly. One of the things my doctors keep on telling me the longer we wait the more likely we come up with something even better to treat you with. When I was first diagnosed we never heard the word “cure.” Now we’re hearing the word “cure” for some forms of CLL, and it’s getting better for lots of people very, very fast.

Make a few goals. I want to do this. I want to do that. Esther, you guys just saw Bruno Mars. Well, you saw him in a coffee shop. I’m going to go see him in concert this weekend. Why not? This is not a death sentence. This is just a part of my life. So I’m going to go do the things that I want to do, and that’s what I tell every single patient. At several of our town meetings I have made the point to remind people that statistics only look backwards. When you start looking at Dr. Google you’re going to see that the average life expectancy of a CLL patient is about six years. Well, that’s only looking backwards. I’m now nine years into it, so some people would say that I’m past my expiration date. I don’t look at that way. I’m living a great life. Every minute that I’m kicking, I’m kicking it for real.

Esther Schorr:
Thank you, Jeff. And, Michelle, any parting advice in this discussion?

Michele Nadeem-Baker:
That’s a tough act to follow.

Michele Nadeem-Baker:
So I would say the number one thing is to educate yourself and not just with as Jeff calls it, Dr. Google. Because if so you will get frightened by what it says because it does look backwards. But I would say to educate yourself as much as you can through credible sources, through current information versus past. Otherwise, you’ll get really frightened.

And the other thing is for those of you watching this, Patient Power generally has the leading doctors around the world for CLL on it. If you can get to one of those doctors that you see or one of the institutes, then that is a great source to go to to find out what is best for you to match you up.

If you do need treatment yet or not, projected time to treatment. And then if you can either go to whichever doctor that is, or in conjunction to what Jeff of Atlanta as opposed to Jeff of Texas is doing, pair that with your community doctor if at all possible so that you don’t have to travel. But that way you can be confident that you’re getting either in a clinical trial tomorrow’s treatment today or the best in treatment there is today. And there are so many out there.

The other advice I’d give, and someone gave this to me in my first week of diagnosis. Stay as healthy as you can today because there will be something to treat you tomorrow. And we’re all proof of that, all of us here right now.

Jeff Folloder:
Excellent advice.

Esther Schorr:
Yeah. Those are all such great advice, and you all are a delight and an inspiration to talk to. I feel very honored to be sort of in the middle of this circle of empowerment.

I want to thank all of you, Michelle, the two Jeffs and Andrew, for sharing your personal experiences as positive and very empowered CLL patients. It’s always inspiring to talk with each of you, and you provided some great perspectives and suggestions. And I want to thank our CLL community for joining us today and I hope that this conversation has been helpful to you. I’m Esther Schorr. Thanks again.

Molecular Profiling, Cancer, and You

When you get a cancer diagnosis, your doctor might, or might not, bring up the topic of molecular profiling. If s/he doesn’t, you definitely want to bring it up yourself, and here’s why: the results of that molecular profiling can significantly impact your cancer treatment options.

The conversations about this topic that I have been privy to, in both patient and clinical communities, tell me that not every doctor is aware of the full array of genetic testing options for every type of cancer. This means that patients need to fully participate in conversations about tools that put precision medicine on the table, which start with conversations about molecular profiling of your specific cancer cells. If your clinical team doesn’t bring it up, you need to bring it up.

Another conversation gets opened when you bring up molecular profiling for your cancer: the one about insurance coverage. Genetic testing is less expensive now than it was ten years ago, but it still carries a pretty hefty price tag.  There isn’t a lot of hard data on the cost of specific tests – like much of healthcare, it seems to be a case of “if we tell you, we’ll have to kill you” when it comes to price tags before purchase – but commercial tests like Caris Molecular Intelligence (formerly Target Now) (priced at $5,500) and OncInsights (priced at $4,000) are pretty steep, particularly if you have a high deductible plan. If your health plan covers testing you’re, well, covered. If not, you’ll have to pony up some serious coin to get your cancer’s molecular profile.

Here’s where the power of community in cancer comes into play. If we, as people dedicated to transforming cancer treatment – patient, clinician, policy wonk, family caregiver, or all of the above – work together to push for full coverage of molecular profiling as both a standard of care for cancer treatment, and a 100% covered service to cancer patients, we’ll start seeing some “cancer moonshot” promised become reality.

Since medicine is a science, and scientists want proven data, here are some tools to use to advocate for making molecular profiling standard, and covered. From the Journal of the National Cancer Institute in 2011, Ready or Not: Personal Tumor Profiling Tests Take Off; from the Journal of Clinical Medicine & Research in 2004, The Promise of Molecular Profiling for Cancer Identification and Treatment; from Medscape in 2014, Can Molecular Profiling Lower Cancer Costs?

If you’re dealing with a cancer diagnosis right now, and want to bring up molecular profiling with your clinical team, here are the key questions to ask:

  • What are the benefits of molecular profiling for my specific type of cancer?
  • Is my cancer tissue a good candidate for molecular profiling?
  • Will molecular profiling improve my treatment options?
  • When should my cells be tested?
  • How much will testing cost, and will my insurance cover it?
  • What if I’ve already had treatment — does molecular profiling give me any options?
  • What are the risks of testing?

The answer to your cancer lies in its DNA. Don’t miss a chance to survive, and thrive – put your DNA to work in your cancer treatment.

Nancy’s Lung Cancer Journey

No one is ever prepared to hear the words “You have cancer”. Even though (from asking for an x-ray that morphed into a CT scan) I knew there was a large tumor in the middle of my chest, I still wasn’t ready. And the pulmonologist was so kind in delivering the diagnosis. He went down the hall with the needle aspiration from my left clavicular lymph node and returned ½ hour later with a tri-fold paper towel on which he had drawn my lungs with the locations of the tumors – upper right lobe (T1), central lymph nodes of the mediastinal area (in total, about 2” x 5”), and one on the lymph node at my neck. And he said “You have small cell lung cancer (SCLC). There’s good news and bad news. The bad news is that it is extremely aggressive. The good news is that it is extremely responsive to treatment. If you are deemed to be “limited stage” (there are only 2 stages for SCLC – I call them good and bad), you have a 30% chance of long-term survival – a normal life.” In mid-August, I thought I’d be dead by Christmas. I spent about 2 minutes on the internet – what I saw was enough to tell me not to look further.

Doctors matter. A lot. I was treated at an NCI-designated Comprehensive Cancer Center by several exceptional doctors. What made them exceptional? Their listening and observational skills first and foremost, their dedication to staying current with research, and their caring. I was lucky – I didn’t have to search for them. These women – my primary care physician, my oncologist and my radiation oncologist kept me alive. They made me part of the 30%, even though my diagnosis said I was borderline extensive stage. It only took 5 months of chemotherapy (cisplatin and etoposide) and twice daily radiation during some of those 5 months, along with an episode of sepsis (broad-spectrum antibiotics, 2 blood transfusions, and a week in the hospital), to have me declared “No evidence of disease (NED)” by early December.

While my friends and family celebrated, I didn’t feel like celebrating. My life had been turned upside-down, I felt wrung-out and fatigued all the time, had lost so much weight that nothing fit, and had lost all my hair. And I knew that in January, I had to have 10 days of prophylactic whole brain radiation to kill any errant lung cancer cells (I was pretty sure it would make me stupid!) And that’s when my doctor prescribed an anti-depressant, which helped.

What did I do during this time – besides visit doctors and hospitals?  I walked – a lot. It was the easiest way for me to exercise, and my boxer was happy to help in that regard. I ate well – meaning lots of fruits and vegetables. And I meditated with guided CDs designed for cancer patients. And I kept up with my friends – often meeting one or more of them for lunch downtown. That not only passed the time but kept my spirits as up as they could be – a distraction if you will.

And when it was over, and I was deemed “cured”, I got angry. Angry that no one talked about the number one cancer killer. Through my doctor, I got in touch with the National Lung Cancer Partnership (now merged with the Lung Cancer Research Foundation), got involved in advocacy, and haven’t stopped. For me – it is healing to try to do something – anything – to prevent more people from going through what I went by raising awareness and research funding.

I have also learned that some treatments don’t let you forget that you had them. I had a CT scan every 90 days for the first 5 years after diagnosis. In the 4th year, they saw that my left ventricle was enlarged and referred me to cardiology for cardiomyopathy (heart failure). It was bad – so I went from surviving the #2 killer to facing the #1 killer! But with treatment from a cardiologist who specialized in heart failure from chemotherapy, I now have an implanted medical device, low-dose daily medication, and a nearly normal heart function. There’s also the foot neuropathy I’ve learned to live with (it’s not so bad) and some balance issues (likely from inner ear damage from cisplatin). But I’m alive!! Alive certainly beats the alternative.

Tools for Living Well With Prostate Cancer

Accessing Information and Support

Downloadable Program Guide

Navigating a prostate cancer diagnosis can be challenging. Where can you access information about your condition that’s easy to understand? What should you expect from your healthcare team? This program, produced in partnership with the Robert H. Lurie Comprehensive Cancer Center of Northwestern University, will feature Dr. Maha Hussain along with Nurse Practitioner Brenda Martone Oncology Social Worker Catherine Cassingham, and prostate cancer patient Gary. The experts will help viewers understand treatment options, emerging research and tools for symptom management. You’ll also hear advice for staying educated and informed about prostate cancer including tips for identifying resources and support for living well with prostate cancer.


Transcript:

Andrew:

Hello. I’m Andrew Schorr. Welcome to this patient empowerment network program. I’m joining you from Philadelphia, and this program, of course, is titled Tools for Living Well With Prostate Cancer. It’s produced by my organization, Patient Power in partnership with the Robert H. Lurie Comprehensive Cancer Center of Northwestern University in Chicago.

We want to thank our sponsors, Astellas, Clovis Oncology, and Pfizer for their support. Of course, they have no editorial control and what you’ll be hearing over the next 90 minutes, comes from our experts.

Now, of course, you need to think about what they say and see, does it apply to you, discuss it with your own doctor. That’s how you get the treatment that is right for you. Over the next 90 minutes, we’ll be discussing the latest in prostate cancer treatment and research, tools for managing symptoms, and advice for living well for patients and their loved ones, and of course, we wanna answer your questions, so be sure to send them to prostate@patientpower.info, and later in the program, we’ll be taking your questions and we have a really – a wonderful panel and I want to introduce them now.

I want to begin with our patient, someone living with more advanced prostate cancer. That’s Gary Andrus, and Gary was diagnosed in 2006. He joins us from Bloomfield Hills, Michigan. Gary, welcome to the program.

Gary:

Hello, how are you?

Andrew:

I’m okay. Gary, you’ve been through it, but it started in 2006. Just briefly, we want to help people understand a little bit about your journey. What led to the diagnosis, was it just a routine physical?

Gary:

It started out as a routine physical in ’05, the latter part of ’05, and then a couple different PSA tests brought it about to a need for greater look, and then it was a biopsy in ’06 and then I was diagnosed in, really, February of ’06.

Andrew:

Now, I understand, when you had that biopsy, the cores kept coming back positive.

Gary:

All 12 cores were positive.

Andrew:

Right. That must have been – I wanna – was gonna say a mind-blower, very upsetting, for sure.

Gary:

It begins to change your life.

Andrew:

Yeah, I’m sure. We’re gonna talk about that and we have an oncology social worker who will be joining us in a couple of minutes, and we’re gonna talk about that part of it as well as, what are the medicines, what are the treatments, what are the side effects, how do you go on? Now, you’ve gone through a lot of treatments. It was recommended not to have surgery and go on with radiation, correct?

Gary:

Yes, it was. There was a concern that, due to my Gleason Scores, and possibility to have the cancer leaving the capsule, some other areas that showed up, that the best thing to do was not to go through a series of surgeries, but then to go right to a radiation regiment.

Andrew:

Now, of course, for some men who are newly diagnosed, they might even be in, we’re gonna learn more about this along the way, an active surveillance situation where they’re monitored, and then some men have surgery, some men have radiation, some men go on other treatments. You’ve gone on to a number of treatments, both chemotherapy and other more targeted therapies, and they’ve changed over time, right?

Gary:

Yes, I guess, most notable, I’ve been on Lupron and I’ve been on intermittent treatment since ‘06, which then led to more of a regular treatment right now on Lupron. In 2014, there were two locations in my spine that were used with stereotactic radiation and then that worked very well for me, and then, lately, my bone scan showed numerous other current locations on my skeleton at this point.

Andrew:

Right, and you’ve had some of the oral therapies you can take now, and you’ve cycled through a couple and they’ve been switched at different times based on your situation.

Gary:

Currently, I am on an oral, which is called Zytiga. Previously, I was on Xtandi. I think the Zytiga may be working better for me, but it’s very early in the process. I’m only on day – oh, this is Wednesday. I’m on day seven.

Andrew:

Wow, so very new. One last question, I’m gonna come back to you more during the program and our audience may have questions for you, too, Gary, living with it, what keeps you going? I mean, the disease has progressed over time, what propels you?

Gary:

Life itself. I mean, there’s no reason to ever give up or whatever. I have too much I enjoy doing and I usually try to take the upbeat attitude, and I’m driven to enjoy everything that there is out there and there’s so much to enjoy.

Andrew:

Well, fortunately and as we’re gonna hear, for men, even with more advanced prostate cancer, there is a lot of living to do and there are more medicines than ever before, and we’re gonna talk about the research as well. Let’s meet your doctor, Gary, who you first met in Michigan and now she’s in Chicago, you followed her there, and that’s Dr. Maha Hussain. Dr. Hussain is a world-renowned medical oncologist specializing in prostate cancer, and she is now the deputy director of the Robert H. Lurie Comprehensive Cancer Center of Northwestern in Chicago. Dr. Hussain, welcome to the program.

Maha:

Thank you, Andrew. It’s a pleasure.

Andrew:

You’ve known Gary for a while, and I’m sure, even though his condition has progressed, as a specialist, I’m sure you’re gratified that you have more to offer him as the need comes up.

Maha:

Absolutely. I cannot believe that it’s been 12 years-plus since Gary and I met. We both were a younger crowd, and we’ve been together. He’s been a phenomenal patient, partner, in all kinds of ways. I think one of the greatest things about him is he is very positive-thinking, and always, the glass is more than half full.

Andrew:

Amen, yeah. It’s the way – for those of us – and I’m a cancer survivor, too, that’s how we – there’s uncertainty and we know we have today, and fortunately, medical science has been moving forward and we’re gonna talk about that. He mentioned Gleason Score, and also, he had a PSA test, so for men who are not so familiar with that, first of all, Dr. Hussain, when we say PSA, think prostate-specific antigen –

Maha:

Antigen.

Andrew:

How is that important in triggering, oh, this person may have prostate cancer?

Maha:

Prostate-specific antigen is a blood test, and it’s a product of prostate cells. A normal prostate will actually have, what we call PSA, prostate-specific antigen, and because the cancer cells are a product of the normal prostate cells, they will, in the vast majority of times, retain the ability to make the PSA.

Now, as you know, prostates can change in size over time, and when we do blood tests for the PSA, there are ranges from what we would consider normal range, and this normal range is – also has to be adapted by age, so someone who is, let’s say, 45 years old, normal range PSA for that person ought to be different than someone who was, say, 75 years old and that has to do with the size of the prostate and other factors.

Because the cancer can make the PSA, an elevation in the PSA could be something that could be cancer related, but I want to point out to the men who are joining us on this session that there are other things that can make the PSA go up, including infections in the prostate, irritation, things of that sort, enlargement of the prostate, so not every elevated PSA is necessarily cancer related.

Andrew:

Okay, he mentioned Gleason Score. What is a Gleason Score and why is that significant?

Maha:

The Gleason Score is named after the pathologist who came up with the grading system, Dr. Gleason, and this was intended to basically better characterize, how aggressive is the cancer? As you know, if you think of the prostate as sort of like a peach, it has both sides, and at the microscopic level, there is what we call glandular tissue. When cancer happens, there are different shades of grey in terms of, how aggressive does it look under the microscope, and the quantity of the worst cancer versus not-so-aggressive cancer does matter in terms of the prognosis and the forecast in terms of risk of relapse and so on.

Dr. Gleason came up with a system whereby, under the microscope, the pathologist will look at the cancer that is present and characterize it by how aggressive it looks. The more it looks like the normal tissue, that’s the less aggressive, and the less it looks like the normal tissue, that makes it more aggressive, and because the prostate is a large organ, there could be the possibility of multiple areas that might have the cancer in it.

Essentially, what they do is try to come up with a lump sum sort of read that gives you the most predominant pattern that’s given a score, and then the lest predominant pattern that’s also – I’m sorry, the next most predominant pattern is also given a score, and those two numbers are added up, and that’s how we come up with the Gleason Score.

Andrew:

Okay, and is that the –

Maha:

Historically, that goes – I’m sorry – from two to 10, and that means a person’s Gleason Score, again, historically, was two or it could be three, or it could be anywhere between that and 10. Then, recently, the pathologists have changed the way the grading system is, so now it really goes from one to five and it’s not the Gleason Score itself.

Andrew:

On the old system, Gary, what was your Gleason Score? What did you find out at the onset?

Gary:

Nine, I think.

Andrew:

Nine, okay, and the old system?

Gary: I don’t know, it was an awfully long time ago.

Andrew: Right, and Dr. Hussain –

Gary:

I think most of them were Nines.

Andrew:

Dr. Hussain, is the Gleason Score – that is a result of doing those biopsies, did I get that right?

Maha:

Yeah, the Gleason Score is not the result of it, but it’s basically the product of a pathologist looking at the tissue that was removed by the biopsy, and obviously, what they do is, when the surgeons, urologists go in, they try to sample multiple areas in both lobes of the prostate.

Andrew:

Okay, so Gary was determined not to have surgery because of how much was found. Tell us about that decision and let’s start with, what I think you call active surveillance. What are the qualities, the analysis going where you say to a gentleman, we can do active surveillance, and what does that entail, and then whether or not surgery would be indicated, and-or radiation, and then, do we need to do systemic therapy?

Maha:

Sure. Let’s begin with a hypothetical case. A person comes in for one reason or another, they end up either having a symptom or even without a symptom they go for their routine follow up with their primary care doctor and the PSA is done. That PSA is done and let’s say it comes back as five. That is monitored and at a next time it’s evaluated, the number is the same or slightly higher. At that point, the patient is referred to a urologist.

The urologist will start the evaluation and part of the evaluation right now, we have, also, integration of MRI to evaluate the prostate that will give better views of where things need to be done and the size of the prostate, and the potential risk in there based on the morphology, and so on. At the end of the day, the definite confirmation of presence of cancer is gonna be driven by biopsies. Let’s say the biopsy is done and then this tissue is evaluated, and the pathologist comes back with a Gleason 6, let’s say. A Gleason 6 prostate cancer is deemed to be, generally, a non-aggressive cancer.

Assuming the patient on evaluation, again, by the urologist and the MRI, there is not a concerning lesion in the prostate, meaning it’s too large or some tumor, or something else that is of concern more so then what the Gleason is showing, and assuming by all other criteria the patient is in good health, compliant, is gonna come back, then usually a process is put in place. Generally, this happens with the urologist where there is routine monitoring of the PSA of the prostate and periodic biopsies are done, again, depending on either for a cause, and it’s not for a cause, as part of routine evaluation.

This is something that was implemented primarily to minimize the risk of unnecessary treatment. Doing radiation treatment or so on can leave the patient with residual side effects from those treatments, when in fact, in the first place, that cancer may not be – ever been harmful and they could have lived and died decades later from something else.

That’s generally the routine, and I generally advise my patients who come in, let’s say, for a second opinion to actually consult with their urologists, have a routine follow up, and never assume that the history is gonna predict the future, which means there are times when patients in follow up, either their PSA goes back up or they develop a mass in their prostate that’s more palpable, or the – on a follow up biopsy, the score goes up, at which point the patient needs treatment. Really compliance becomes a critical part of the process.

Andrew:

Okay, so it’s a team, and I want to introduce someone else who’s part of your team. I think this is a good place to do it. That is a nurse practitioner who works with you, with prostate cancer patients, and that’s Brenda Martone. Brenda is a very regular part of your team. Hi, Brenda, thank you for joining us.

Brenda:

Hi, Andrew. Thank you very much for having me.

Andrew:

Brenda, when somebody is in active surveillance, they’ve got to be communicating with their doctor, right, and then there’s a certain routine that Dr. Hussain just talked about, maybe some repeat biopsies with some frequency, monitoring the PSA. When you talk to patients, you have to say, we’re in partnership, right?

Brenda:

Absolutely. We can’t do this by ourselves and we need to make sure the patient understands what their responsibilities are, and then we need to make sure that we follow up with them if they do get a little bit lost, so we can continue the process and the act of surveillance.

Andrew:

Okay, and if we have partners of our patients listening, you’re part of the team, too. I know my wife is one who has to remind me sometimes, whether it’s to take my medicine that I take for the cancers I have or scheduled a visit or call and follow up. It’s a family affair or it could be your daughter, or even grandchild sometimes, depending upon your age. Dr. Hussain, let’s go back and take it further now. We talked about active surveillance, but what are the indications then for surgery?

Maha:

Well, I’m gonna say indications for local therapy –that could be surgery or radiation, and as I mentioned, if in fact, upon re-biopsy, there is an upgrade in the pathology, so the Gleason Score goes up, let’s say, to start with, someone’s Gleason Score was six, and now it has gone up to, let’s say, eight, then that is not something that we want to sit on. That would be require a treatment. A change in the characteristics of the way the prostate is such that even though things may not be changing, but there appears to be now growth of the tumor and the prostate itself bigger, different things will trigger an evaluation.

The other part, there are times where the patient himself feels uncomfortable continuing to do this and would rather have their prostate out, and certainly, it’s a shared decision, which means the physician’s job is to explain the pros and cons, and at some point, the patient will have to decide, does he want to continue with this active surveillance because it is a commitment. This is not something you do for two years and say then, okay, I’m done, nothing else is necessary.

When it is deemed necessary to proceed with local therapy, I should highlight, we look at the patient fresh. For example, is this repeat biopsy, is such that is requiring that the patient undergo staging, which means cat scans repeated, bone scan done to make sure there is no visible cancer spread because that obviously will impact on whether it’s appropriate to proceed with local treatment versus not.

Generally speaking, the medical oncologists are not directly involved, although, I have to say, Brenda and I have our share of patients who come in for a tie breaker, so to speak. They might have consulted with a radiation oncologist and with a surgeon and the question comes back, well, what do you think, Dr. Hussain or which is better? I think this is where clear information and education of the patient with regard to the pros and cons of both approaches – the good news, Andrew, is that prostate cancer is highly curable, and that’s the great part. The other part, even if it’s not curable with local therapy, it is highly compatible with long living.

The intent is to do the best possible upfront and again, we focus a lot on shared decisions, so surgery or radiation is done. Now, depending on the aggressiveness of the cancer, the level of the PSA, the Gleason Score and so on, if a patient chose radiation therapy, they might have earned, also, a finite duration of hormonal therapy with is. That’s part of the tradeoffs to discuss with their physicians.

Andrew:

We’re gonna talk about that in a second. Radiation, is that typically a – years ago, they developed the seeds they could put in, and there are other ways of delivering radiation too, right?

Maha:

The seeds is one tool. Generally, the more – tool is what we call the external beam radiation, and these are given generally daily, five days a week for a period of time. Recently, actually, ASCO and I believe ASTRO modified the guidelines and this hopefully will be reflected in patient material to look into in terms of shortening the duration of the radiation so that patients don’t have to go for two months worth of treatment or something of that sort. That would be the case.

In terms of the seeds, there’s two types of seeds, there are the permanent seed implants, which are general put for the lower grade, like the Gleason 6 cancer, but there are the high seed implants that generally are placed, then they’re removed, and these are intended to maximize the radiation together with the external beam radiation.

Andrew:

Okay, and Gary, am I right, you did have radiation to the prostate, is that correct?

Gary:

I did.

Andrew:

Okay, how long did you have that for?

Gary:

43 treatments.

Andrew:

Okay, so we’re talking about maybe more compressed now, Dr. Hussain?

Maha:

Yes.

Andrew:

Okay, new guidelines. All right, Brenda –

Maha:

I’m sorry, there are tradeoffs, and I think that’s where it critical for the patient to talk with their radiation doctor about the side effects.

Andrew:

Okay. Brenda, there they are. There’s maybe a husband and wife sitting across from you, and they heard this, they’ve come to your clinic, as well, maybe they’ve also been a urologist, and they’re trying to sort this out. How do you counsel people? Then, I’m gonna talk to our final guest Catherine in a second, who is a social worker, but for you, as a nurse practitioner, people trying to sort out the pros and cons. Oops, you’re muted. I’m sorry.

Brenda:

Okay, there we go. Can you hear me now?

Andrew:

Yeah.

Brenda:

Oftentimes, it’s joint decision-making with the oncologist and presenting the data to the patient and whomever they’re with, and then focusing on outcomes as well as the risk benefit ratio and reassuring them that symptoms and side effects can be managed, and we go through what those symptoms and side effects would be, as well as potential management, and just let them know that they’re not going through the treatment and the process by themselves. They have a team that’s supporting them.

Andrew:

Okay, well, part of the team and joining us now is Catherine Cassingham who is with us, joining us also from Northwestern. She’s an oncology social worker, so there is a team approach and it makes a difference. Catherine, Gary gets hit with a ton of bricks, that he’s diagnosed with prostate cancer, cancer, and it’s – the biopsies all come back positive, and he’s – and he said it was life changing and you deal with that in patients you meet at the clinic. Let’s talk about coping with that, first, emotionally for the family member as well as the patient, and then, also, this decision-making where, do you go left, do you go right, it’s hard.

Catherine:

It is, definitely. First of all, thank you very much for having me and I do – whether it’s prostate cancer or any type of cancer, when you first get that diagnosis, it can be incredibly stressful. Everybody deals with that and copes with a diagnosis differently. I think it can be really important that, whatever you are experiencing, to know that that’s normal, and to then seek out supports based on kind of what you’re going through.

There are times where I will see somebody when they are first diagnosed and they’re pretty much in a state of shock, and so we’ll just kind of go through what they’re experiencing and what their shock looks like. Then, typically, as people get into treatment, they kind of feel like, okay, now I’ve got a plan. Sometimes they tend to be doing better when they feel like, okay, there’s something that I can be doing.

Then, I will typically end up seeing people a little bit farther down the road when they’ve been going through treatment for a while, and still going through treatment is a stressful process. You typically have more doctor’s appointments. There’s ongoing stress. I like to talk about – it’s kind of like you start off with a glass full of water and that’s your ability to cope, and with every stressful event that happens, that keeps going down. It also gets to a point then where it’s really important to start filling that glass back up, and there’s many different forms of support that can help with that.

Andrew:

Yeah, you can get to a point where you feel like you’re running on empty. I know I was diagnosed 22 years ago with leukemia and my wife and I were in tears, I felt like I was on the floor, and little by little, you pick yourself up. Gary, how did you do that? How did you get past the shock and move on?

Gary:

You know what, I really can’t tell you how I did it. I just did it. It was more about – I did make a series of life-changing moves, diet, I was in a position I didn’t have to really work anymore, so I quit working, I focused on my own health and everything outside of that, but then I made it fun. I mean, very honestly, Dr. Hussain used to say to me – I drove a 1967 Camaro convertible to nearly every one of my radiation treatments, again, right after the July 4th holiday in ’06, and I had the top down and the music on and would go up and have my treatment, and then jump back in my car, drove back down.

I refused to wear hospital gowns. When you go into this room, you’re supposed to go in and change and put on your hospital gown one front, one in the back, and go in, and you sit down in a room, and patients – everyone’s kind of hanging out there and then your number is called, or you go in and get your treatment. The first thing you have to do is take your robes off, so I decided that I wasn’t doing that anymore, and about my third treatment, I walked in in a pair of boxers, really fancy boxers, and a t-shirt and all the guys looked at me, and they’re like, are you in the wrong place? I was like, no, but I’m not sick either, and hospital gowns mean your sick. I just have cancer. I’m just here to get this done.

The next thing I knew, we had a room full of guys sitting there in boxers, that’s what happened, and then we all exchanged email addresses and we stayed in contact for quite a while, about two years. A lot of us stayed in contact with each other, but it was – you go in and you just do it, and yeah, there are side effects and there are things that happen. That’s part of the journey. That’s okay.

Andrew:

We’re gonna talk more about that, but I think what you’re saying is you found some brotherhood, as well, and I would say, if your partner is a female, there’s a sisterhood among partners of men who are dealing with prostate cancer, and you can find support groups. One of our partners in this is Us Too International, they have support groups all over the country, you have our friends at Malecare, there are other prostate cancer groups, and so you can reach out to them. You are not alone. Somebody has walked in these shoes ahead of you, like Gary, and men have had those range of treatments that Dr. Hussain described.

Just back to you for a second, Brenda. We talked about the decision-making that Dr. Hussain was talking about, whether it’s with your clinic or with the urology clinic, if it’s related to surgery, people are afraid of being wrong. Oh, my god, did I make the wrong decision? And you’re worried about that. Are there wrong decision or it’s just based on the best evidence and what the patient feels is right?

Brenda:

It’s definitely based on the best evidence, and there really isn’t a wrong answer, especially when Dr. Hussain and I are counseling patients or talking about treatment options. We definitely present the options that are appropriate, and we often tell our patients that we’re giving you options because they’re all appropriate for you and equivocal, and we just have to match the right option for you and what you feel the most comfortable and confident doing.

Andrew:

Okay, and that’s what we’re gonna do. That’s the last thing I wanted to ask you about, is, Catherine, again, people fear being wrong, or have they made their situation worse, have they made a misstep, and what do you tell people there?

Catherine:

Right, well, typically, we talk about, do you trust your doctor, and usually the answer is, yes, and so, do you trust your doctor that they’re giving you all of the information, and once you have all of that information, we just kind of work through what seems like it’s going to fit best with your life and still kind of keeping apart of you.

I love what Gary said about wearing a t-shirt and boxers, that that’s very much your personality, and to find a treatment option that will fit best with the decisions and how you live your life normally, then, going from there as far as once they’ve started treatment, are working through that and then are concerned it’s not working as well as they wanted it to, that kind of thing, that then we start talking about managing that fear and insecurities about decisions, that kind of thing, because nobody has a crystal ball, so we can’t figure out what’s gong to be the best option. Oftentimes, it’s just coming and finding acceptance with the decisions that we have made.

Andrew:

Right, and I think what you underscored is, having the healthcare team that you believe in, and you have the confidence. Gary’s had tremendous confidence in Dr. Hussain and her guidance over many years, and while it’s gone through a range of treatments, he’s had confidence that they’re doing the right thing. We talked about some of the approaches, surgery, and radiation, and I just wanna check with Brenda about side effects, okay? There’s no free lunch, if you will. Surgery is a significant decision and can have issues that come with it, as can radiation, so could you just talk about that for a minute?

Brenda:

Yes, of course. Surgery, men can – after surgery, can have issues with incontinence, which is leakage of the urine. After surgery, there are exercises and things like that that can be helpful to recover some of the muscle strength, but you may not be back to baseline, and so, managing that, men may need to wear a pad.

There are other side effects, of course, in terms of sexual function, depending on – the surgeons try their best to do what they call nerve-sparing surgery, to allow, obviously, erections and that, but not all the time is that maintained or preserved after surgery. Men need to be aware that they could have some sexual dysfunction following surgery, and again, there are sexual health clinics and options there to help manage that side effect.

Andrew:

Okay, and radiation, what I hear from people, really, the radiation, is they just get tired.

Brenda:

They do, they do get extremely tired, and it’s a progressive thing, the longer that they’re on treatment, and it’s sort of a funny thing, you can’t see, smell, or feel radiation, but you become so fatigued. There are also the side effects of, depending on where the radiation beam is aimed, sometimes men can have irritation to the rectum, so there can be problems with diarrhea, and then, depending on how they’re able to keep up with fluids and all that kind of stuff, sometimes men can suffer from a little dehydration. Nausea isn’t so much of a big deal, but again, the fatigue can be very, very challenging.

Andrew:

Okay, is there anything you can do to help?

Brenda:

Oh, yes, absolutely. Oftentimes, we focus on hydration, we focus on encouraging men, even when they’re feeling so tired, to get up off that couch. It doesn’t have to be a jog, but just walk around the block, walk around their house, stay active. Exercise is s really good – or just physical activity is a really good problem solving or a really good intervention to help minimize some of that fatigue, and then, of course, looking for other things like making sure they’re not becoming anemic and things like that, we could support them, making sure their diet, even though it’s very restricted on radiation, has foods that are high in protein and iron, and things like that.

Andrew:

That’s a good point. Gary, I understand in reading up about you that you changed your diet, too, right? Tell us about that.

Gary:

It was a personal decision to stop eating meat, chicken. I went on a very – for a while, it was even macrobiotic, very – just all greens, but that was just the way I chose to do it for my own mental thought, if I felt as though I want to get rid of that, but I haven’t had any meat since ‘06. I stopped right away. Still, I don’t eat meat, but everybody has to find their own sense of what is best for them.

Andrew:

Right, Catherine, I think what all of us, any of us diagnosed with cancer want to do is, how can we try to take back control rather than feeling like a victim. If it’s diet, if it’s driving the car with the music up, if it’s wearing t-shirts and boxers instead of the gown, that’s all to the good, isn’t it?

Catherine:

Oh, of course. No, that’s what we really encourage. Of course, I’m a social worker, so I usually give the spiel about therapy and support groups and all those things, and those are really wonderful, but on your day-to-day, if you can find things that really help you still feel like you during this process, that’s really important, and so, often, that’s having a conversation with a patient because I can’t just give them a list of, oh, here, do these 10 things, and then you will still feel like you. Often, it is just looking and seeing if there were other rituals or traditions that you did naturally before that you can still keep doing now.

Andrew:

There may be new ones. Gary, if I’m correct, you actually became sort of an evangelist for men knowing about prostate cancer within your community and talking to individual patients, right?

Gary:

Well, most men won’t talk about prostate cancer. Women will talk about breast cancer openly, and they’ll gain the support of other women, but men get very standoffish about talking about their own prostate cancer. I’ve tried a couple ways of letting guys get together, I’ve had some docs even at Oakland Hills come in and speak to men, hosted different things. Dr. Hussain and myself and a few others, we tried the Blue Boxer thing, didn’t get enough groundwork to kind of launch it, but it’s till out there. You can still look up the Blue Boxer Foundation.

I’ve tried to do it, and I still find, guys, they don’t want to talk about it. Occasionally, at Oakland Hills, now, somebody will – when they get that first diagnosis, somebody will say, go call Gary and talk to him, he’s been through a lot of it, but one thing I do know is everybody’s on their own journey. They have their own lifestyle. They have different feelings. They can’t just walk away from a job and focus on themselves and their health and go to yoga three times a week, and just get a mindset that I’m gonna win. Their life can’t stop like that. Everybody’s got to do their own thing to find their comfort.

Andrew:

Right, on the medical side, too, how do they cope? I wanna just ask the question of Dr. Hussain. Dr. Hussain, we’re in the age of personalized medicine, and in a second, were gonna start to run down some of the treatments you have, both the approved ones and also the ones in research, but we’re in this age of personalized medicine, so that’s part of the decision-making that you do with the patient, with the family, right, is what’s right for that individual, correct?

Maha:

Absolutely. I think this is one of the longest conversations, because you’re dealing with the stress of knowing you have a cancer. That word is scary to everybody. There is not a – I can’t even say anything that says, oh, it’s okay because it is a scary word to patients and their families. There is the whole mental stress part of it, then there is the stress of what it means down the road, and then there is the stress of needing to make the decision about the treatment. There is also the stress to patients about what treatment to pick and what are the potential side effects, because remember, most people are asymptomatic. They’re just going about their life, and suddenly, they get diagnosed with the cancer.

We try to very much individualize when – and we talk about personalized, it’s really personalized at the macro and micro level, which means at the patient-doctor interaction and their choices with regard to what they prefer, all the way down to, obviously, downstream in terms of the biology of the cancer itself. The good news is this, is that, in most places, and if they’re not – if this info is not available, there is the potential for patients to have access to material, but I do think that, in most places, there are support systems available for patients to help them and guide them in terms of a decision making.

Andrew:

Okay, let’s talk about hormones for a minute. Is prostate cancer, Dr. Hussain, fueled by testosterone? Is that like throwing gasoline on the fire? Is that what it is? Then, where does controlling hormone with medicine come in?

Maha:

As it turns out, testosterone is the feeder for the cancer, and essentially, potentially even the instigator, so to speak, of causing, potentially, the cancer, and therefore, starving the cells from the male hormone is essentially the backbone of treatment when we get to the level where systemic therapy is necessary. In the old days, this was accomplished by removing the testis, and subsequent to that, medical therapy hit the clinic and there are many choices right now that we have, primarily injections to try to suppress the testosterone production and shut down the testis.

By starving the cancer, that causes the cancer to first arrest and it doesn’t grow, and then, ultimately, the cancer cells will die. Then, depending on the setting and how much cancer there is, and how resistant or how smart are the cancer cells, the downstream outcomes can vary by individuals. There are people who continue in a good response for a long period of time, and there are patients who, unfortunately, literally, I say, respond for five minutes and their cancer ends up progressing, but the majority is not like that.

The majority is, you can buy a lot of time and hormone treatment has gravitated now to the earlier stages of the disease because that is where, when you have lesser cancer, you have a better chance of eradicating it from the system with the hope that you can cure the patient, and so, consequently, that is part of the operation when we have patients choosing radiation treatment, but let’s say they have borderline bulky disease in their prostate, a finite duration of hormonal treatment is added to the radiation and that ends up prolonging life.

Andrew:

Gary, you had hormonal therapy for quite a while. It worked for a quite a while for you, didn’t it?

Gary:

Yes, I still am on hormonal therapy.

Andrew:

Okay, so that’s part of it. Let’s talk, Brenda, about side effects. You’re shutting down, as best you can, the testosterone, so it’s not a free lunch, there are some side effects with that, right?

Brenda:

Yes, there are. The most frequent side effects with androgen deprivation therapy is hot flashes, men can get hot flashes. They can be infrequent, or they can hop into hourly, and they can be distressing. They can also gain weight. We are altering their metabolism by taking away their testosterone. Men often gain weight in the same – kind of the midsection where women gain weight during menopause, there can be muscle mass wasting, so their muscle mass can go down, and then probably the most – or more distressing would be the lack of libido because it’s testosterone that kind of drives that sex drive, as well as having erectile dysfunction or not being able to get an erection.

Andrew:

Okay, so we see on TV, there are pills for things like that. I think, do they work in men who are going through prostate cancer treatment?

Brenda:

There are times where men can get erections with medications such as Viagra, I’m not advertising, but those sorts of medications that help with that. What we don’t want men to do is pay attention to those commercials that talk about low T and what you should do for that because that’s exactly what we want to avoid, is supplementing the prostate cancer with additional testosterone.

Andrew:

Yeah, gas on the fires.

Brenda:

Absolutely.

Andrew:

Don’t want to do that. Gary, what side effects have you had with hormonal therapy and how have you coped?

Gary:

All the ones that Brenda has mentioned. The hot flashes, I think the doctor was saying, we’ll probably use the right word, but I guess I would say I’ve been chemically castrated for years, the hot flashes, but you cope. I always looked at the hot flashes as, it’s no different than what hundreds of thousands – every woman has to go through at some point in time, and actually, sometimes in the winter, they kind of warm me up.

Andrew:

Living in Michigan, yeah.

Gary:

Yeah, living in Michigan, but you just deal with it. I still get hot flashes. I mean, the drugs I’m on now, everything – you still get hot flashes, they’ve never stopped. At different times, they’re pretty intense, but that’s better than any other times.

As far as the sexual nature, Dr. Hussain and I talked years ago and I’m like, you’ve got to be kidding me. I mean, I don’t really care. At this point in my life, whether I was 48, 50, and now 61, it’s about living. I don’t hold that side of my male character as being what makes me male, and I’ve tried to explain this to other men, it’s – that is not what makes you a man, and I’m a pretty strong alpha male, and I’m on the board of directors at Oakland Hills and I’m – and guys see me as extremely strong alpha male and they follow me, and it has nothing to do with whether or not I have a strong libido or not. It doesn’t come into play. It’s all in your head.

Andrew:

Well said Gary. Well, let’s go on. If I get this right, Dr. Hussain, these are what you call androgen deprivation therapy, did I get it right? Is that the right term?

Maha:

Correct. The intent is to deprive the cancer cells from the androgens, which are the male hormones, essentially, testosterone and testosterone-like products, to starve the cancer.

Andrew:

Okay, now, I have heard the term, castration-resistant, so what does that mean when a doctor says to a patient, well – does that mean that hormonal therapy or anti-deprivation therapy is no longer working?

Maha:

Correct, and maybe, if we have a minute, let me maybe walk the audience through, why did we come up with this terminology?

Andrew:

Sure.

Maha:

Historically, what we used to call the situation, hormone refractory, and then, over the years, we’ve discovered, just because you’re shutting down the testis, it does not mean that if you are gonna introduce a new hormonal treatment, that the cancer isn’t going to respond. A perfect example is what Gary is on, so the medication that he is getting, the Zytiga, is a hormonal therapy.

In some way, it’s intending to shut down sources of androgens, and so several of us in the United States, we actually developed working group type criteria for calling the disease itself as to what it is and essentially, what a castration resistance implies is that a person is on hormonal treatment, their testis is meant to be shut down completely by the Lupron or the Zoladex, whatever hormonal agent they have, or they might have chosen to actually go through surgical removal of their testis.

Now, despite the fact that they don’t have a lot of male hormone in their body, their cancer is actually growing, and that is what we refer to as castration-resistant disease.

Andrew:

Okay, so you may be on this, treatments like this for continuing to try to keep that shut down as best you can. Let’s go on and understand, though, chemotherapy. Chemotherapy has been used in prostate cancer and across all cancers for a long time. Does it still have a place in prostate cancer?

Maha:

Absolutely. I would point out that, if we’re gonna be focusing more so right now on the more advanced stage of the disease, I would point out that the first drug that has ever demonstrated in the history of the disease, of castration-resistant disease, in overall survival improvement in prostate cancer was actually chemotherapy, a drug that’s called docetaxel approved by the FDA.

Prior to that, we had different agents that were potentially palliative, but not necessarily life prolonging, and then subsequent to docetaxel, another drug also was evaluated in patients who’ve been exposed to docetaxel and also showed an overall survival advantage, which is also a drug approved by the FDA and called Cabazitaxel. The good news is we don’t have to just have chemotherapy. There are other agents that have had a track record ever since 2004 by demonstrating an effect against the cancer, which we measure by, generally, criteria of prolonging life and overall survival improvement.

Andrew:

Okay, and someone could be on chemo with one of these other drugs, as well?

Maha:

Well, it’s too early to say at this moment. Right now, the sequence of events is generally if a person has developed castration-resistant disease in general, most of the time outside of clinical trial, patients preference, and a lot of times physician preference, is to offer oral therapy, and the oral therapy would be hormonal agents that are oral agents like the Zytiga, which is abiraterone with prednisone or enzalutamide, which is – these are both drugs, again, FDA-approved for patients with castration-resistant disease. Then there are clinical trials looking at maximizing the anti-cancer effect by combining these types of hormonal agents with chemotherapy.

What we know is this, is moving chemotherapy earlier in the cycle of disease, before it becomes castration-resistant, and-or agents like the Zytiga into the earlier phases where the cancer, let’s say, just became metastatic, but it’s not yet resistant to the hormone treatment, that gives a much better return on investment, so to speak, in terms of prolonging life. There’s been a stage – a shift, a migration to earlier phases of the disease where we’re implementing these types of treatments.

Andrew:

I want to go through some of the other medicines and approaches that are used, and also the research, which I think is very encouraging. Dr. Hussain, a few years ago, time passes, there was a vaccine developed for prostate cancer. When we think of flu shots and other vaccines our kids get, things like that, this is different, and where does it come in?

Maha:

Well, the vaccine is an agent called sipuleucel-T, or Provenge, and this was actually the first vaccine approved in prostate cancer, There aren’t many vaccines, by the way, historically, for treatments of cancers in general, and where this comes in, essentially, the intent was to, in fact, personalize the care of the patient by arming the body with this particular vaccine to fight the cancer itself.

It’s an approach available commercially at this moment, and certainly, patients should consult with their physicians regarding the appropriateness of it, and partly because some aspects of this particular vaccine as such where you the acuteness of the situation may determine which agents you want to pick up, whether it’s going to be a vaccine versus a chemo, versus a hormonal agent, so this is where I would say personalizing the care to that individual becomes very critical.

Certainly, if it’s appropriate, that’s available, FDA-approved, and patients could explore it. There’s a lot of work looking at, essentially – I don’t know if this is premature to address, but the adoptive cell therapy and other things to try to arm the body with the tools necessary to fight cancer.

Andrew:

Right. We’re gonna talk more about that, but basically, can an approach be developed to boost your immune system or make a personalized drug to fight your cancer? A lot of work is going on, on that. We talked about radiation earlier, Dr. Hussain, and I know at least there’s one radiopharmaceutical. What does that mean and how does that come into prostate cancer treatment?

Maha:

Radiation, as you know, is a technology that is intended to kill the cancer cells in a directed manner. In patients who have metastatic disease, you obviously cannot put the body through a radiation machine and try to hit it in multiple areas. There are times where we can do that, and certainly, we have done that with Gary when you have limited number of spots, certainly, that the trend nowadays is – what we do is to target as much as possible those areas to try to maximize the cell kill, the kill of the cancer, on top of getting the hormone treatment to starve it.

One of the features of prostate cancer and what I call the hallmark of metastatic prostate cancer is actually spread to bone, and it’s still puzzling, why does it go to bone, say, compared to any other cancer as the number one site in the vast majority of times? Trying to target the bone while you’re sparing other body parts from treatment is certainly a legitimate treatment approach with the intent of maximizing the potential benefit and minimizing the potential side-effects. Radium–223 is such a radiopharmaceutical, I would point out, it’s not the first radiopharmaceutical that was utilized in prostate cancer.

Years ago, there were other radiopharmaceuticals that were approved by the FDA then, I would say, and this is more like the 90s. Those were not life-prolonging. They were more of a palliative-type treatment. Radium, on the other hand, was a treatment that demonstrated the potential for prolonging life. Same thing, I think, for patients. If, in fact, they are interested in it, they should discuss with their doctors whether it’s appropriate for them, and the reason that is the case, it’s not going to work for cancers that are outside the bone. If a person has bone and lymph nodes or spots in the lung, or spots in the liver, or somewhere else, then certainly, the Radium would not be the appropriate treatment for them.

Andrew:

Brenda, again, let’s talk about any issues related to bone. If Gary or another gentleman says, my back hurts or I’ve had this pain in my hip or something, that’s kind of an alert to you and you may want some bone scans, right?

Brenda:

Absolutely. Any time that a patient complains of pain in a new location or something that is persistent, absolutely, you need to get scans, again, because the prostate cancer is prone to go to bone, and the pain doesn’t tell you exactly what’s going on in the bone, and so you need to investigate that.

Andrew:

All right, and Gary, you’ve had radiation. I have a feeling it’s external radiation for where you’ve had these bone issues. Is that right?

Gary:

Yes, I have. Recently, there was a cancer that was found in my shoulder and I had radiation for that that eliminated some of the pain, but more recently, I’ve had some bone scans and it shows some other areas that have lit up, so right now, I’m on a host of drugs and being watched closely by Dr. Hussain and Brenda.

Andrew:

Okay, did the radiation help –

Gary:

I’ll be back to see – radiation eases the pain at time, but right now, I don’t think – it’s not a general, overall answer for me.

Andrew:

Okay. Well, we wish you well, of course. I want to talk about bone targeting or maybe bone strengthening agents, Dr. Hussain. I know there were drugs developed for women in particular for osteoporosis, but there are also some benefits that have been around for some of these drugs for people with these bone issues. Am I right? Do they come into play for prostate cancer?

Maha:

Yes, they do, and there are two general case scenarios where they apply, and I would encourage patients to specifically discuss that with their physicians. Let me start with the simple case scenario, and you brought up the issue of women. As you know, when women go through menopause, or if they are, say, with a specific treatment that causes reduction in the bone density, that is when we talk about osteopenia, osteoporosis, and then the potential medication to strengthen the bone in that direction.

Men who go on hormonal treatment without having spread of cancer in the bone can also have osteopenia or osteoporosis, and so, generally, what we do, once the patient is started on treatment, a bone density, or what we call a DEXA scan like women get when they go through menopause, is done for the men, and based on risk a fracture, usually we calculate that. Brenda is an amazing resource because I can never keep this in my mind. She has an easy access to figure out what the risk of fracture is going to be and that will then guide us in terms of telling the patient whether they need bone strengthening medication or not.

The reason that’s important to distinguish, because the strength of those medications and the frequency of administration is quite different than when we start using those medications for the purpose of preventing prostate cancer damage on the bone, so that’s the two distinguishing factors. To start with, in general, we advise our patients who go on hormone treatment to take vitamin D and calcium, to have weight-bearing exercise, upright exercise, and so on, to try to enhance the bone effect.

Now, if you move to the other stage, which is a spread prostate cancer, at this moment, as far as we can tell from the clinical trials that have been done, if a person has a hormonally responsive cancer that has spread to the bone, there is no clear indication that a bone strengthening medication is necessary at that point.

The flipside is, when patients move into the castration-resistant phase of the disease and if they have cancer in the bone, in that situation, there are agents that are what I would call – minimize the cancer damaging effect on the bone that are generally given on a monthly-type schedule. These are agents that have been FDA-approved, again, based on large clinical trials that demonstrated reduction in what we call skeletal-related events, and what these things are, fractures, pain, different damaging effects of the cancer on the bone.

The one thing I should point out, they are not life prolonging, but they are what I would put under the category of supportive care. The critical part of this is that patients should be evaluated by their dentists to ensure that there is no need to have a major dental extraction or some kind of major surgical intervention on the jaws because, in a certain percentage of men, and certainly in women is the same story, going on these medications and then having to have a tooth extraction or some major jaw procedure can lead to problems with bone healing there. This is the kind of stuff where all dentists have been notified by the FDA and alerted regarding what they need to do.

Andrew:

Okay, and just to be clear, we’ve gone through the range of approved therapies, is there anything that has been changing the landscape of late?

Maha:

Well, actually, this is a perfect question in terms of timing because, just recently, there was the European Society of Medical Oncology meeting, ESMO, and there’s some very interesting information emerging from large clinical trials that were conducted in Europe demonstrating the potential value for adding radiation to the prostate area in men who have metastatic disease that is responsive to hormone treatment, but do not have a lot of cancer in their bone or lymph nodes, where, in fact, radiating the prostate is leading to a prolongation in terms of overall survival, life prolongation.

I would encourage patients who might have just started hormone treatment for metastatic disease to discuss with their doctors whether they would be appropriate candidates for this type of approach, and certainly, there is a lot of research going on to better understand the biology of prostate cancer and how the cancer escapes the effect of the treatment to try to come up with better treatments to attack it. One of those, I guess, treatments are the PARP inhibitors.

Andrew:

All right. Let’s talk about that. We’re producing this program just days after the European Society of Medical Oncology meeting has happened in Munich Germany, and so news comes out about different approaches. PARP inhibitors that you just mentioned had promise, I believe, in ovarian cancer and now they think in breast cancer, so do they have a role in prostate cancer, Dr. Hussain?

Maha:

Well, I think my gut feeling is yes. PARP inhibitors have had a track record in ovarian and in breast cancer, and there are several FDA approvals in that regard. We began to discover that there are subgroups of men with prostate cancer who are potential candidates for PARP inhibitors, therapy, and literally, I, just about two days from now, will be giving a special lecture at the Prostate Cancer Foundation and have a table of all the PARP inhibitor trials that are going on in the US or in other parts of the world, and it’s an amazing list of clinical trials.

Several of these trials are what I would consider registrational trials, and several of them have either approved or are undergoing approval. It’ll be interesting to see, at the end of the day, the results because that’s really what’s gonna prove the principle, but the early indication would suggest that it is quite likely that prostate cancer will be one of those diseases that will benefit from PARP inhibition.

Andrew:

Okay, so gentlemen, as you and your colleagues there, your partners take notes about this whole discussion of clinical trials, you should be asking your healthcare team, would a clinical trial apply in my case, and do some research on it. Certainly, a major center like our partner today, the Lurie Cancer Center has trials going on and you need to ask about that. We’re gonna take your questions in just a couple of minutes. I just want to go over a couple of other things.

I have to ask about, I guess, the field of immuno-oncology, Dr. Hussain. People have been seeing that people, even with more advanced lung cancer, have been helped by helping their immune system fight back against the cancer. Does this apply to prostate cancer?

Maha:

I think, as we talked about, we already have an immune therapy approach, which is the vaccine that is approved for patients with prostate cancer on grounds of prolongation of survival. Currently, there are multiple clinical trials that have been looking at the newer class of drugs, the checkpoint inhibitors, and so far, on the surface overall, there is not a positive result, although we’re learning from all of these trials and that there might be subsets of patients who may be potential candidates and may have a better chance of responding to these treatments.

The other part, there is also work going on with combining the immune checkpoint inhibitors, immune therapy with PARP inhibitors to try to create a synergistic effect against the cancer. There’s a fair amount of research going on, and there are other potential trials coming up looking at essentially what I call personalized immune treatments where the tumor is taken out and then analyzing the cells, and then creating an antibody against that particular cell and putting it back in and so on, and certainly the CAR T-cell, which is something that’s highly celebrated in hematologic conditions.

I know that there’s a clinical trial going on, I believe, on the East Coast, so there’s a fair amount of interest in the immune therapy and its potential in this disease. One of the things that I would encourage patients to consider, particularly when the cancer is in situations where there may not be many options, certainly having a biopsy of the current cancer tumor as opposed to the old biopsy and having it be evaluated for certain features that may actually potentially predict for response to immune treatment.

There is a blanket FDA approval for one of the immune agents in that regard in multiple diseases, so this is where I would encourage every patient to discuss it with their doctor and explore options, either clinical trial or standard of care.

Andrew:

Right, one of the things we can explain to people, and let’s see if I get this right, Dr. Hussain, is the biology of your cancer cells matter, not just that it’s fueled by testosterone, and so now we’re developing these immune therapies where matching up with your biology of your cancer is really important. Did I get it right?

Maha:

Yes. It’s still work-in-progress. It’s still more of what I would call preclinical, at least for prostate cancer, preclinical, early clinical research phase, but I would say stay tuned. I think that this is a disease that is clearly complicated and clearly very smart, and very much different than other cancers, including lung and other cancers, or kidney cancer, or breast cancer, and so on. Clearly, a focused approach on this cancer and doing research specifically in it to better understand, why does it not respond to normal hormone treatment and how can we outsmart the cancer with new strategies? There’s a lot of work going in that area.

Andrew:

Right. Development on – could there be other anti-prostate cancer vaccines, the checkpoint, or immunotherapies, CAR T-cell therapy, which I know very well in blood cancer, some of my friends have had it for various hematologic conditions. Are there combinations you alluded to with chemotherapy or combining other agents, better bone targeting agents? Just to wrap up on where our window – you’re our window, Dr. Hussain, into research. Are you encouraged about where science is going for the men who are listening?

Maha:

Absolutely. I would say I got into the field in the mid-80s. I worked in Detroit, and prostate cancer, as you can imagine, was quite prevalent at the time. I worked in a VA hospital, and literally, we were diagnosing prostate cancer as part of an emergency diagnosis. Somebody shows up to the emergency room paralyzed or having severe pain, and then we discover that they have prostate cancer, and from treatment, with hormone treatment, and then death, the time was quite short. We’ve seen a significant prolongation of life, significant progress, and practically, I would attribute the progress 100% to investment in research and partnership with patients in terms of the clinical trials in there.

I will also say this, and this is, again, something that perhaps Gary’s situation highlights, is that men, even when they have advanced prostate cancer, they are likely to live a decade or more, and so I do think it becomes very critical to focus on quality of life, focus on health in general, focus on multiple parts, and as I tell patients – is that, if you give up, nothing I do will make a difference, so having to have a positive attitude and thinking that the glass is more than half-full is very critical, but just to give you a feel, from one of the trials that I ran, more in the late-90s and the 2000s, believe it or not, somewhere about 17% of prostate cancer patients with metastatic disease in fact can live 10 years or longer.

If you think about it, there aren’t many cancers that can do that, and this is in an era where we did not really have that many treatments for patients with metastatic disease, with a spread cancer, so I would say the future is much brighter. It’s never easy to have cancer, there’s no question about it, but I do think that the glass is more than – way half-full. It’s much more than that.

Andrew:

Very encouraging. Brenda, a question for you about trials. There are times when you and Dr. Hussain talk to your patients about trials, and often, people are hesitant, they’re unfamiliar with it, people don’t want to be a guinea pig, but yet, Dr. Hussain talks about all this research and the partnership with patients. How do you explain it to them, about trials, Brenda?

Brenda:

Trials can be complicated, and these are long discussions and they’re important to have. Oftentimes, all clinical trials come with an informed consent document, and this really details everything about the trial, why it’s being done, the expectations, and what the expected outcomes could be, as well as the risks and the benefits, so patients are given this, and it can be quite long and quite overwhelming. Initially, the first discussion is basically about their disease, how they would potentially qualify.

All people have to qualify for the trial, certain eligibility criteria, and then letting them know, oftentimes, the trials at our stages in the prostate cancer population, we see patients with more advanced disease, rarely include a placebo, which is always a big concern, that patients don’t want to be treated with sugar. If, by chance, the clinical trial does have a placebo, that is always included with an act of treatment, so patients are always getting the standard of care with the addition of maybe an extra medication.

Patients oftentimes will know what they’re getting, so it’s rare that things are double-blind, and no one knows what they’re getting. Patients will know what they’re getting, as well as just telling them about the expected side-effects, giving them a chance to think about things, giving them a chance to ask questions. We never have a patient see us in the clinic, hear about the trial, and then sign consent. That is not true consent.

Consent is understanding and having your questions answered, so when we have the initial discussion, we send the patients home with the consent document with everything written down so they can read about it in a quiet environment, discuss with their family members, and then come back for another visit to talk about what their thoughts are, what their impressions are, and if that’s something they’re interested in doing, the clinical trial.

Andrew:

Okay, just a couple of personal comments, I was treated for leukemia in 2000 with a new combination therapy, and they’re studying combination therapies, as well, in prostate cancer phase two trials, so it was not the earliest trial, but not the latest, and the combination I got, which worked for me and gave me a 17-year remission in that leukemia, that was approved ten years later, so I got it ten years early. There’s the chance of getting tomorrow’s medicine today.

You have to consider it, there are a lot of good options now, do these options that are being studied make sense to you, and evaluate that with your healthcare team. That’s my plug for trials, to at least consider it, not be afraid of it. Dr. Hussain, we had a question that came in from William, and he wonders if he, at that point, doesn’t have metastatic disease, but he might develop, that would be a fear, how do you delay it, and is that just all these different procedures you were talking about?

Maha:

Well, if a person – if William has had a diagnosis of prostate cancer, and assuming that it was the type of cancer that requires treatment, essentially everything we do in the beginning is intended to not only delay, but hopefully prevent metastases, and so, depending on how, big is the cancer in the prostate, how aggressive it looks, how high is the PSA when local therapy is done, it could be done either by itself or surgery or radiation, or we would add, potentially, hormonal treatment for a finite period of time with the intent of essentially cleansing the system from any cells that might be running through the system there. This is sort of the upfront type treatment with the hope, again, not to delay, but rather prevent, and certainly, it could delay the prostate cancer.

Andrew:

Okay. Catherine, you’ve been sitting here, and I want to ask you some questions that are so important, and one of them is, let’s say whether you went to Dr. Hussain or another doctor somewhere and you still have questions in your mind, should a patient be hesitant about seeking a second opinion?

Catherine:

Never. That’s actually something – here at Northwestern, we’re really lucky to have people like Dr. Hussain and Brenda, who are wonderful practitioners, but for anybody else, and anybody here, if you do have any questions, please don’t ever hesitate to reach out to your own physician and ask clarifying questions, or the nurse practitioner, or go seek a second opinion somewhere else. This is your body, your family, your relationship, your life, and so you need to be as most informed about it as possible, so I really encourage that, and if you’re struggling with that, also, please always reach out and ask to speak with a social worker and they can help you formulate what questions to ask.

Andrew:

Catherine, another question for you. Gary talked about how he got his head on straight for him related to libido and sex. That’s a touchy issue depending upon your age and maybe just how you feel about it. How do you counsel patients, maybe couples, about communication related to the sexual issues?

Catherine:

Sure, of course. That’s something that, for anybody listening, I would really want to empower you to ask those questions. As Andrew just pointed out, oftentimes those are topics that people might not feel very comfortable bringing up and talking about with their doctor, but find somebody that you do feel like you can talk to about this, so whether that’s the doctor or the nurse practitioner or a social worker, know that there are urologists who specialize in the physical aspects and that there’s also people like social workers and health psychologists and sex therapists that can help you identify new ways to be intimate with your partner or yourself.

Sexuality is a very crucial component of people’s identities, and also their day-to-day life, so I think that just because it’s a touchy subject, doesn’t mean that we shouldn’t be talking about it.

Andrew:

Brenda, here’s a question for you. Joe writes in, he’s wondering, if PSA goes down, a man already has prostate cancer, should he feel secure that the disease is not progressing? In other words, can it fool him into a sense of security when maybe the prostate cancer is progressing, but the PSA has gone down?

Brenda:

PSA gives us an idea of what’s happening, but it doesn’t tell the full story. Oftentimes, you can do PSA, but then you also need to look at imaging if that’s appropriate for the patient, as well as physical exam and other laboratory findings. The PSA itself isn’t the end of the story. It gives us an idea. Now, obviously, if your PSA is 0.0, which is undetectable, and depending on the stage of your prostate cancer and your therapy approach, it is reassuring when your PSA is down, but again, that’s part of the picture and your provider, talk with them, will be able to help address that question, as well as comprehensively evaluate you basically head to toe as needed.

Andrew:

Another question for you, Brenda, and that is from Kevin who had his prostate removed at age 55, he’s 62 now, and his PSA has remained zero. He has two sons, 34 and 32, and he wonders, should they have some kind of genetic testing? In other words, are they at risk?

Brenda:

That is a really good question and it’s based on family history, as well as the characteristics of the prostate cancer. We actually have a genetic counselor that works with us specifically for prostate cancer, so if you have any concerns about a hereditary component or your sons being at greater risk, please discuss that with your current provider and talk about wanting to meet with a genetic provider. They’ll be able to look at the family very comprehensively and take a cancer history, and then, based on that, they’ll be able to guide you as to what they recommend and what sort of additional testing should be completed.

Andrew:

Okay, Dr. Hussain, we got this question in from Stephen. He says, at what level, what PSA level, do you start hormone therapy – when he’s got a second recurrence, and also, at what PSA level can a scan find out where my cancer is located?

Maha:

Maybe I can begin with the second question, and that is at what PSA level the scans will be positive, and the answer is, there is no specific PSA level for that. When there is suspicion and there is concern about a relapse, certainly scans are appropriate. The one thing I should point out, the lower the PSA, the less likely that the scans will be positive. Having said that, if a scan is done and it’s negative, conventional scans as in bone scan and a CAT scan, there are, right now, specialized imaging that is FDA-approved called Axumin PET scan, which is approved by the FDA for men who do have what appears to be an elevated PSA, but certainly negative scans, otherwise. I’m sorry what was the first question?

Andrew:

The first question was, at what PSA level do you start hormonal therapy for a second recurrence?

Maha:

Right, so I would say this is one of, perhaps, the longest conversations with patients. If a patient has a PSA relapse and has received, already, radiation treatment, then certainly, imaging is gonna be critical, and if the imaging is negative, then it’s essentially a conversation about pros and cons because there is really no indication at this moment starting the hormone treatment earlier somehow prolongs life, and there’s obviously the trade-offs of potential side effects from the hormone treatment.

For patients who actually have a second relapse and you do scans and there is definite evidence of relapse of metastatic disease, irrespective of the PSA level, I would say, in that situation that the hormone treatment is – and additional potential treatment is what I would recommend for the patient.

Andrew:

Here’s one we got from Bob. Bob says, given that there are second-generation drugs for androgen deprivation therapy, why would one ever start with a first generation, Dr. Hussain?

Maha:

Well, I think maybe we can clarify so that there is not a mixing of the intent of the words. Essentially, the hormone treatment, the backbone of the treatment is going to be suppressing the testis, and so that is sort of the – at this moment are the injectable agents. The first generation, so to speak, androgen-targeted agents like the Bicalutamide and drugs of that class are generally pretty much not that much used in the situation where patients have metastatic disease where we’re beginning to see benefits from the second-generation and much more powerful.

The difficulty is gonna be essentially like anything else. Prostate cancer is not one-size-fits-all, so depending on the stage of the disease, the prior exposure to the treatment, whether the cancer is resistant or not resistant, hasn’t seen hormones before or not, the second-generation agents are sort of making their way into the different stages of the disease.

Andrew:

Bob sent in a key question, and he says, simply, what does the word cured mean when it comes to prostate cancer, Dr. Hussain?

Maha:

Cured, that is a word for any cancer, is you live and die from another natural cause with no evidence of cancer presence. The one thing about prostate cancer, one may not be cured from it, but it certainly is amenable to living with it without it causing harm, which means there are times where the PSA is elevated, the scans are negative, and the PSA is slowly going up, and like anything else, no human being will live forever. If, in fact, there is cancer activity, but it’s not visible, a person could actually live and die from something else and not the prostate cancer.

Andrew:

Is it true what I’ve heard, that most of us, as we get older, I’m 68, even if prostate cancer hasn’t reared its head, if you did an autopsy and we live a long life, you’d find some evidence of some of it?

Maha:

Correct. In fact, there were some statistics – by the way, 68 is not old. So basically, the answer is yes, the prostate can actually harbor what looks like prostate cancer, but that is not necessarily something that’s gonna behave like a cancer, and certainly, there were some data, and I don’t recall when it was published, but it was decades ago, where if – the essence of it is, if you took the prostates of men in their 80s, a good percentage of them will, in fact, have evidence of cancer in that prostate, but that never manifested itself.

Andrew:

Okay, Kevin sent in another question. I want to get to that as we just have a little time. Kevin said, of the 29,000 men who will die from prostate cancer each year, do they die directly from the prostate cancer or do they die from some form of the spread of the cancer to other parts of their body?

Maha:

It’s the latter, the spread of the cancer to other parts of the body, and patients always ask, if I’m gonna die from prostate cancer, how am I gonna die? I always mention to them, almost, it’s attrition. It’s essentially the gradual failure of the body because of the cancer essentially imposing itself on different parts of the body. Unlike some other situations where people die from bleeding, from difficulty breathing because there’s a buildup of the cancer in the lung, or something like that, the vast majority, again, of the patients who die from prostate cancer don’t die because of bleeding, don’t die because of infection, they just gradually – it’s body attrition, basically.

Andrew:

Catherine, we’ve heard a lot over the last 90 minutes, and we’re just talking about maybe where prostate cancer spread. Dr. Hussain and her colleagues and Brenda working together around the world are trying to knock it back, and Gary’s been living that, but there’s a lot of uncertainty for the man and his family. How do you counsel people to go on? I mean, Gary is going on, but just generally, what do you say to people when there’s this uncertainty of living with the cancer, trying to control it as best you can, but you don’t know how long that’ll last?

Catherine:

Right, so a lot of it is figuring out how you best cope, right? That can be support groups, and you can find support groups through organizations like us, too. You can also find really great education materials on there, that sort of thing, but as Gary also mentioned, oftentimes, men with prostate cancer don’t really want to talk about it. For example, I don’t see many men with prostate cancer in my clinic just because talking one-on-one with somebody isn’t what they’re interested in, so in that case, then I really encourage any form of informal support groups that you can find and that can just be creating a group of friends to go golfing together or something like that.

You don’t even necessarily need to be talking about the cancer, but having a support system around you, or having one or two people who you do trust that you can talk to about this, whether it’s your significant other, a friend, another family member. You don’t have to tell everybody what you’re going through if that doesn’t feel comfortable to you, but having at least a few people, one or two in your life, that you can talk about what you’re experiencing can be really beneficial for people.

Andrew:

Okay, thank you. That’s wonderful advice. I just want to – as we wrap up, I want to mention a couple of things quickly. See if the clinic you go to has a social worker you can talk to. They can help you with financial issues, communication issues, travel issues, even if you’re going to a clinical trial, sometimes there’s logistical support to help you with that, and certainly, with communication. It’s so important to talk to your doctor, your nurse practitioner like Brenda, and call with questions, call with questions, right?

We talked about the sexual issue, the emotional issues, all important. Just a final word, Gary, what do you want to say to the men and their families who are listening to maybe give them some hope?

Gary:

There’s always hope. I mean, there’s always hope. I don’t take where I am right at this particular point and say that I’m giving up any hope. I’m not giving up anything. I’m still planning to do things, and I believe that around the corner will be the next challenge, but that’s not gonna stop me from planning a Harley ride next week or getting out to Phoenix and going up in the mountains with my motorcycle or jumping in my Corvette and zipping around the neighborhood. When we hang up here, I’m going to get up to the Oakland Hills and go have some laughs with the guys.

There is no – to me, there is that, what I call, the dark 30 in the middle of the night where you get scared, but you’ve got to stop that, and if you really are scared and you reach out and you type something through these portals, we have some tremendous communications. Northwest has got the portal. Every hospital now and every caregiver has a portal. You can be very open and honest and ask the questions, and then, if you need to, you zip down, and you go see your doctor. I did something that most people won’t do. I followed Dr. Hussain to Chicago. I lived in Bloomfield Hills, and next thing I did is I now have an apartment just minutes from the hospital on the 33rd floor. It’s a penthouse apartment.

Andrew:

With a doctor you trust. With a doctor you trust, and that’s so important.

Gary:

With a care team I trust.

Andrew:

Care team, right. So true, and we have two of them with us, too. I want to say, Brenda, thank you so much for being with us, and I want to urge people, and Gary just stressed it, the care team, it’s the whole package. It’s an eminent specialist, a doctor such as Dr. Hussain, it’s a nurse practitioner, it’s a social worker, and sometimes it’s a financial navigator. There are people there to help you. Hey, Brenda, thank you so much for being with us.

Brenda:

You are very welcome, and I’d like to say that the patient is always in the center of that circle surrounded by the providers.

Andrew:

Amen, and the family members, ask questions, speak up, ask questions, and Catherine, I wanna thank you so much for being with us. Your field of oncology social work is so critical to help us feel more confident.

Catherine:

Thank you, Andrew. It’s been a pleasure.

Andrew:

Lastly, Dr. Maha Hussain, you’ve been devoted to men with prostate cancer for decades and helping spur research. Now you’re in Chicago. I want to thank you so much for being with us, and I want to thank you on behalf of the prostate cancer community, I’m sure I speak for them, for your dedication.

Maha:

Thank you very much, Andrew. It’s been a pleasure, and as I said, I think the future is much brighter, and it would be great for patients to contact their physicians, speak with their care team, and also access material that’s available through different venues, which I’m sure you have them available for them, but I would encourage you to look at what I would call vetted material because that would really, really help you also prepare.

Andrew:

Right, wonderful, and certainly, there’s information from your hospital at Northwestern, The Lurie Cancer Center, from patientpower.info, from the Patient Empowerment Network, that’s one of the supporters of this program, of course, and also, Us Too International was mentioned in male care, ustoo.org and malecare.org. Thank you so much for being with us. I want to thank our supporters for this program, Astellas and Clovis and Pfizer, and certainly, I want to thank the Patient Empowerment Network. Signing off from Philadelphia and wishing Gary and all of you the best of health, I’m Andrew Schorr. Remember, knowledge can be the best medicine of all.

What Are The Latest Developments in Prostate Cancer Treatment and Research?

Tools for Living Well with Prostate Cancer

Dr. Maha Hussain of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University discusses the latest treatment and research in prostate cancer and how prostate cancer patients and their loved ones can stay informed.


Transcript:

Dr. Maha Hussain:

So, with regard to recent developments relating to treatments that have been FDA approved and/or have promising early data that, hopefully, will lead to FDA approval, there’s been a fair amount of progress. So, since 2004, there have been numerous agents that have been approved by the FDA on grounds of survival prolongation in the setting of end-stage prostate cancer, specifically metastatic castration-resistant prostate cancer. A couple of those agents were moved earlier into the face of the disease, where specifically in the metastatic hormone-sensitive setting, which is the cancer has yet not been exposed yet to hormonal therapy. And the two drugs in that regard is Docetaxel and abiraterone and prednisone who were moved into that space, and they both demonstrated an overall survival prolongation which also led to expanding the FDA indication in this population.

There are drugs, however, that aren’t necessarily life-prolonging but they definitely have a clinical benefit. Examples would be agents like denosumab and zoledronic acid, both of which are not life-prolonging but certainly have reduced the damaging effect of the cancer on the bone and, therefore, were approved as supportive care type agents.

Now we have a large list of agents that are currently undergoing testing. Both, I think, of these agents are generally targeting two pathways. One of them is androgen-receptor targeted agents. That is being evaluated right now in clinical trials and phase 3 clinical trials, and the other class of drugs is the PARP inhibitors.

And I should point out that PARP inhibitors are agents that have been approved by the FDA for patients with breast cancer and ovarian cancer and at this moment are undergoing testing.

Several agents, actually, are undergoing testing specifically in advanced prostate cancer. There are other trials in early phase prostate cancer but there are definitely several that are being evaluated and have completed accrual and are about to be reported in the context of metastatic castration-resistant disease. So, I do think that the portfolio is expanding, and every time we have success that is really attracting more investment in terms of research in this field with the hope that we will come up with even better drugs as we move forward.

How Can Patients Stay Informed About Prostate Cancer News?

Dr. Maha Hussain:

Patients can access the National Cancer Institute’s website, they can access the American Society of Clinical Oncology website. Specifically, there is the cancer.net, which is geared specifically towards patients.

That is modules that are generally reviewed on a regular basis and has actually reviewed by both experts and patient representatives. Certainly, the American Cancer Society has information. The different foundations that are disease-specific like the Prostate Cancer Foundation, the Komen Foundation and so-on. So, there are multiple venues for patients to access the data. And, as I said, probably the biggest pool is going to be specifically the American Cancer Society.

Obviously, the obligation is definitely on the physician to inform the patient of what is available, recognizing fully that the media is full of information. And so, I definitely encourage patients always to make sure that they bring in the information and/or the questions to discuss with their doctors. And ultimately, a shared decision is made. Access to clinical trials is available but not every trial is available everywhere. So, several factors are to go into the process of considering participation in a clinical trial and certainly, for those of us in major centers, we tend to communicate with each other so that we can try to provide something to patients from another center or visa-versa and work with each other. And certainly, within the community, I, on a regular basis, get contact from physicians, oncologists in practice looking for potential opportunities for their patients. But as I said, the patient should not be shy. Ask your doctor.

Should Prostate Cancer Patient and Their Loved Ones Be Hopeful?

Dr. Maha Hussain:

Absolutely. I will tell you that some close to 30 years ago – so, that’s in our lifetime – certainly my lifetime – there weren’t many options for patients. And in fact, that’s what attracted me to the field of GU oncology and specifically prostate cancer. I worked in a VA hospital and in an inner-city hospital in Detroit, and we invariably encountered our first date with prostate cancer was pretty much end-stage patients presenting with multiple symptoms. And there was really not much to offer them other than castration, other than bilateral orchiectomy and of course, hormone therapy came in and kind of allowed patients the freedom of choice of what specific modality you want to choose. But at the end of the day, I would say, compared to the early 1990s and now, we have moved a huge, a huge way forward towards better treatments.

Now, still, for advanced prostate cancer, the disease is not curable yet. I actually am very optimistic. As we move these treatments into less aggressive phases of the disease, we’re seeing a better investment in terms of – return investment, I’m sorry – in terms of the outcomes. As a perfect example, moving Docetaxel and abiraterone prednisone into the hormone-sensitive population, one is able to get a much bigger, again, mileage or turn on investment so to speak with regard to disease control and overall survival.

The recent two agents that were moved in the setting of non-metastatic but castration-resistant disease, both apalutamide and enzalutamide, which both got FDA approval in that phase of disease. If you look at the magnitude of delay of metastasis from occurring is tremendous and that eclipses what we’re seeing, for example, in end-stage disease. So, I am confident at some point, as we get more and more data, many of these agents will be moved into even further earlier stages of the disease where cure becomes a potential. And I don’t think that’s going to be a long time from now. Ultimately, I do think it’s going to require investment and research and partnership between patients and physicians to try to conduct the necessary clinical trials to ensure that we have the cures of tomorrow possible.

Mental Health Challenges for Aging Americans

Editor’s Note: This blog was originally published for the Georgetown University Online FNP Program and can be viewed here.


While there’s many benefits to enjoy during your golden years, including time spent with loved ones after retirement, the American Psychological Association External link  (APA) says that aging “also comes with unique challenges: the loss of close friends and family members; complex and debilitating medical issues, such as sight and hearing loss; and increased financial pressure.” Identifying these challenges is becoming more important: Although recent research published in the Journal of Clinical Psychology External link  found that people tend to be happier as they age, it is estimated that 20 percent of the 65 and older population External link  meets the criteria for some type of mental health disorder.“While seniors are less likely to be depressed than younger people,” Suzanne Allard Levingston writes in an article for The Washington Post External link , “the size of the baby boom population will demand new strategies to care for them.

The most common mental health disorders for aging Americans are depression and anxiety, which are also leading risk factors for suicide. Nursing@Georgetown created the following infographic to help illustrate some of the common signs and risk factors of depression among aging Americans.

View the text-only version

 

Symptoms of depression include persistent sadness, withdrawal from previously enjoyed activities, difficulty sleeping, physical discomfort, self-medication via substance misuse, and feeling lethargic, according to the CDC. They go on to note that depression is not considered a normal part of growing older External link , and while it is normal to experience sadness, grief, loss, and mood swings, depression that impacts a person’s ability to function requires treatment and support.

Anxiety often goes hand in hand with depression, according to a publication from the CDC and the National Association of Chronic Disease Directors (NACDD) External link . The report goes on to highlight how almost half of older adults who are diagnosed with depression also meet the criteria for anxiety. The effects of anxiety include persistent worry along with physical symptoms that can include muscle tightness, restlessness, difficulty sleeping, stomach problems, and nausea all lasting for an extended period of time.

The APA outlines External link  how serious the physical consequences of depression and anxiety can be: “The feelings of hopelessness and isolation that often spur thoughts of suicide are more prevalent among older adults, especially those with disabilities or confined to nursing homes.”

The rate of suicide External link  among both men and women ages 65 to 74 has steadily increased over the past two decades. In 2014, the highest suicide rate in the country was among people 85 years or older External link .

The Role of Primary Care

There are several reasons why treating depression in the elderly poses a unique challenge. Common among patient’ concerns are: “inadequate insurance coverage, stigma around mental health… denial…and lack of transportation,” according to the APA External link . Systemic reasons include things like a shortage of trained geriatric mental health providers and miscommunication between health care providers.

In addition, when older adults visit their primary care providers, they tend to focus on physical symptoms rather than talk about how they’re feeling or what they’re experiencing mentally and emotionally, according to a fact sheet from the Illinois Department of Public Health External link . This can lead to mental health issues that go unrecognized, untreated, or undertreated. For example, the AARP External link  points out that depression is sometimes misdiagnosed as dementia.

The good news is that there are effective treatments for depression, and adults with depression can improve from treatment if they receive it. Primary care providers such as Family Nurse Practitioners play an important role by identifying at-risk older adults and taking necessary follow-up actions by implementing routine mental health screenings and treating symptoms that negatively impact quality of life.

Please note that this blog post is for informational purposes only. Individuals should consult their health care professionals before following any of the information provided. Nursing@Georgetown does not endorse any organizations or websites contained in this blog post.