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Claiming the Number One Spot

Assimilation can sometimes take years to complete. Or, it can be a slow imperceptible change. It can happen and you may not be aware until after some time has passed. For others, assimilation can be a brutal quick mind-numbing takeover. What am I speaking of? It’s the mental and emotional takeover of being seen as a person with a name to a patient with a date of birth, social security number, and insurance card.

From the initial time you get your cancer diagnosis, you’re thrust into a complex healthcare system and suddenly you find yourself trying to maintain and keep your identity as a mother, father, sister, brother, son, or daughter, husband or wife. Soon, you’re running from doctor appointment to doctor appointment. Your sense of choice and control over your time and understanding your body is now unrecognizable to yourself. Eventually, you’re a patient. It’s scary how quickly your mindset changes and you find yourself feeling more like a victim. Understandable when you’re over your head all consumed in perhaps the battle for your life. Instead of assimilating, perhaps transitioning is a better term. It is difficult, but necessary, however, not to the degree you may think. Just because you are now ill, it doesn’t mean you have to just sit back and let the doctor make all the decisions and you just follow. You have to be an active participant in your care, every day, all the time! Traditionally we have always felt that doctors know everything and they will always do what’s in our best interest, all of the time. Not so! I had to remember when my husband was in treatment for myeloma, no two patients are the same, and no one doctor knows everything. There’s a reason it’s called “the practice of medicine.” It’s time to look at yourself not as a patient but as a person with a disease. You can still have control over your life and steer the ship.

This is a short fact sheet on self-empowerment. Refer to it over and over to remind yourself how to manage your treatment plan with your healthcare team. And, use it to expand your treatment team.

First:

Anytime you are in your doctor’s office, you are the most important person in the room. It’s all about you. Make sure the focus is on you and that you are giving your treatment team everything about your health, even minor changes as they may be important. Ask about the treatment, how it has affected other people and how it can affect you. What are all of your options? And, also equally important, what is this going to cost?

Second:

Ask over and over until you understand. Whether it’s about your health or the cost of your treatment plan, you need to be in the driver’s seat. You need to be able to plan not just for next week but for the rest of your life. Don’t be afraid to ask and get answers. Be respectful of your doctor’s time. Perhaps call in and make your doctor aware of your need for a few extra minutes to go over your questions or concerns or ask if you can send these questions ahead of your appointment so they can be prepared. Be aware that the financial questions may be sent to a social worker or someone else. On your request ask that they identify that person. That way you know who to go to for that information in the future. Or, request a few additional minutes to your appointment to have your concerns addressed. The point is, make sure you ask about all the concerns you may have regarding your treatment and its costs.

If you have problems asking questions there are people who can help you who can advocate on your behalf when you can’t. In addition to discovering or acquiring the skills you need to become an effective self-advocate, you need to be empowered to believe that your voice can and should be heard. Unfortunately, many older people, my mother was one of those, who are less educated or come from lower socioeconomic groups—those who are timid or shy by nature—may find it difficult to question someone they perceive as authority figures who control their destiny. They may fear asking “dumb” questions, or may not even know the questions to ask, or alienating their doctors by questioning them. And, trust is critical to any good doctor-patient relationship. Patients want to believe in their doctors. If you find yourself not getting the attention you need or answers to your questions, or you’re getting push back from the doctor, it may be time to look for another doctor. It won’t be easy, but not doing so can have a huge negative impact on the quality of your care. This is advocating for yourself and it’s so empowering!

Third:

The more you know about your cancer, the more you can participate in your treatment. There are many ways to research your illness. There are cancer-specific non-profits that offer a wealth of information and cancer-specific support programs. You may have access to a medical library or don’t forget the wealth of information you can get from creditable websites online.

One of the most difficult areas of advocating for yourself may be regarding understanding the cost of your care and sharing with the doctor before it’s too late how you don’t know how or if you can afford the care that is necessary. Financial toxicity adds so much stress which interferes with your health outcomes. And, unfortunately, the COVID-19 pandemic has only made things worse. The sooner you bring this subject up with your healthcare team the better off you are going to be. Our society, unfortunately, judges people on how big their house is, what kind of car they drive, and whose name is on clothing labels. Look around, you can have all the money in the world, but cancer/illness is one of the great equalizers. Your goal is to get the best care you can. There are many resources available to help you do that. From healthcare to financial assistance to empowerment guidance. Just ask!

Diahanna Vallentine

Diahanna Vallentine, BCPA, Financial Empowerment Lead

In 2002 Diahanna and her husband received the news that her husband had MGUS, a precursor to Multiple Myeloma. Upon her husband death in 2013, Diahanna immediately decided to make it her mission to help patients and caregivers empower themselves to speak up and to position themselves as partners in their treatment. Diahanna became a Board-Certified Patient Advocate. She is currently the Financial Myeloma Coach for The Myeloma Crowd Foundation.

Voice of America: Dr. Sajjad Iqbal

April 29, 2021/in PEN Blog, Sajjad Iqbal /by Kara Rayburn

Voice of America: Dr. Sajjad Iqbal from Patient Empowerment Network on Vimeo.

Featured on Voice of America’s South Asia, Sajjad Iqbal, recounts how he relentlessly fought and advocated for his health and how he takes what he learned to help other cancer patients.

Transcript:

Speaker 1:

In 2002, with the diagnosis of an extraordinary form of parotid cancer in Dr. Sajjad Iqbal, doctors announced further bad news that his survival chance for next 2 years was just 30 percent. Such patients cannot even survive for the next 5 years.

Dr. Sajjad Iqbal:

If nobody survived for 5 years, why is it such a bad thing? Once upon a time no one could go to the moon. Now, many have gone there. So, I’ll be the first patient who lived for 5 years.

Speaker 1:

Instead of surrendering to cancer, he expanded his scope of study and started to explore new research on similar cancers, like breast cancer, ductal carcinoma, all cancers of head and neck and prostate cancer. His cancer had HER2+ features. A new medicine was being given to HER2+ breast cancer patients. Doctors did not agree to give that particular medicine to Dr. Sajjad Iqbal as there were no studies showing its usefulness in his type of cancer`. However, he not only convinced doctors with his logical wisdom but persuaded them to conduct new research by pointing out flaws in existing research.

Dr. Sajjad Iqbal:

After seven years, another study was published that included just my type of cancer. They said that 60 percent of patients got better from this medicine.

Speaker 1:

In 2009, when his cancer recurred in lungs, then he wanted to have Endoscopic thoracic surgery. But doctors would not agree to do it. Finally, he found his desired doctor at Cancer Hospital New Jersey who agreed to do Dr Sajjad’s Endoscopic surgery keeping in mind that he knew more about his disease than others.

Dr. Sajjad Iqbal:

The cancer has never come back in the lungs. If the cancer stirs even slightly, we make treatment changes immediately. You can say that we have imprisoned the cancer.

Speaker 1:

There is a saying that hope is essential for fighting cancer. You have to be your own best advocate.

Pat:

How are you?

Speaker 1:

When Pat was diagnosed with cancer, she had been working in Dr. Sajjad’s clinic for 20 years. She considers it her good fortune that Dr. Sajjad was with her.

Pat:

He said to me that I want you to learn about your cancer, read about it yourself, and then we would talk about it. And he was with me at each step. He even went with my husband and me to see the Doctor in Sloan Kettering. And then again guided us as to which doctor is better, who should I see. To check a doctor’s background, skill and qualification, for all that I depend on him.

Speaker 1:

And when Pat’s husband was diagnosed with Prostate cancer and her daughter also had cancer, Dr Sajjad was there to guide. He directly helps many other cancer patients like Pat, in many different parts of the world, through Patient Empowerment Network. It is a free website where people, suffering from cancer, can get cancer related services and information.

Fauzia Iqbal:

Sajjad sings to her in Punjabi.

Speaker 1:

Dr. Sajjad considers family support important along with treatment.

Fauzia Iqbal:

Sajjad goes for chemotherapy alone and he is never afraid of taking bold steps like if he has to undergo some surgery. If you have such a personality, it becomes easier to deal with, and as far as family is concerned, everyone loves him & takes care of him.

Speaker 1:

Dr. Sajjad became part of the news when a patient from New Zealand who he had helped, came to see him by travelling 9,000 miles distance. She had been given six months to survive by her doctors. Under the guidance of Dr. Sajjad, now she is cancer free. Dr. Sajjad is living an enriched life with his three children and their children. He continues to fight the battle against his own cancer. He has recorded that story in his book Swimming Upstream. This book gives hope and a different perspective to many who are struggling through difficult times. (Saba Shah Khan, Voice of America, Ridgewood, New Jersey).

Dying Ain’t Dead

April 5, 2021/in Patient Stories, PEN Blog, Women Patient Stories /by Cissy White

“Can I toss these?” my guy said grabbing the vase of wilting daffodils.

“No,” I shouted. “Please, no. I’m trying to find the beauty in dying,” I said.

I’ve been taking pictures of these flowers since I got them. First, they were tight and closed, then blaring yellow in open-hearted pride, and then, slowly they began to brown and shrivel up. But they are still alive, like me, and that is worthy of notice and celebration.

I’m not ready to add them to the compost bin, not ready to empty the water around their green stems. I can still see the beauty they are as what they were fade. Yes, it’s true, they are not as bright or healthy as they were. But on the planet still and with some life left in them yet, they are. Can I pause to appreciate this not only in myself but in others?

I’ve had a few shit-my-pants scared kinds of nights. It’s not just that recurrence means I can’t be cured, the crap news no one wants but that most of us with ovarian cancer will indeed get. I’ve mostly wrapped my heart and brain around that. I’ve grieved and mourned the old woman I am unlikely to become. I’ve realized there’s no guarantee I’ll be around for graduations, weddings, births, and even the death of others.

“The chances are 50/50 you will be alive in three years,” my oncologist said when pressing me on doing more chemo and maintenance therapies.

“But how much of that time is dying?” I asked, somewhat dismissively.

“None of it if you are alive,” he said. And here, it is important to share that my oncologist is both doctor and minister and though I’m not religious, it is one of the things I love most about him, that and his kindness and responsiveness. Once, when I was fretting, he said, “Never worry alone.” I love a doctor who invites you to share your worries and concerns, and who means it as well. I also have his cell phone and email and he texts me almost immediately after scans. This is invaluable and generous and rare, from what I have heard.

But, in the last few months, I’ve had trouble breathing, exercising, and exerting on any level. I spent a day in the ER ruling out a pulmonary embolism, getting cardiac work-ups, follow-ups, and a specialist appointment to see if I have a right atrial enlargement. The thing about cancer is that it’s not even the cancer that causes most of the problems, but the cancer treatments including chemo, immunotherapy, maintenance drugs as well as all of those in combination. And that’s after surgery, for most, and for some it also means radiation treatment.

The longer I live with cancer, the more often I go to the doctor’s office. I kept saying, “It feels like I’m on chemo but I’m not on chemo,” as though this should be a red flag, an alarm, and mean something significant. It didn’t.

And then, the breathing got even worse, and there was pain that made it hard to sleep, stand, walk, workout, or be. Sometimes the pain was heavy, like a hardness in my chest, or like a weighted blanket on my back. Other times, when I sneezed or hiccupped or breathed in deep it was more like a shooting pain beneath the ribs in my back and was like a bad back where the times you find comfort are far outnumbered by the hours when everything hurts.

Sure enough, there was fluid in my right pleural space beneath my lung. My back got “tapped” like a keg, and it looked like a pitcher of beer was drained from me. Immediately, I felt better – not so much in terms of pain relief but in energy, ability to walk stairs, stand upright for hours, and clean the house. I felt sort of like myself and it made me realize how bad it had actually got. It happened slowly and I thought I was just lazy and out of shape.

I wanted the fluid in my lung to be from the Moderna shot or even maybe a past case of COVID, but the most likely thing, malignant cells and cancer as the cause were indeed what it turned out to be.

Even when I think I’ve sort of realized I might not get to 58 or 60, then it occurs to me that I might not even make it to my next birthday. “Whew,” my oncologist texted when I told him that the pulmonary embolism the PA said meant would require immediate blood thinners and hospitalization, was actually not a pulmonary embolism but a pleural effusion.

How does a mistake like that happen? Is it just from a quick glance of someone in a hurry? Pulmonary embolism and pleural effusion sort of look and sound alike and if you aren’t used to treating cancer patients maybe seem more similar than different.

I don’t know I only know that it’s terrifying to Google pleural effusion and cancer and so I’m not even going to Google pulmonary embolism and cancer. I’ll trust my oncologist’s “whew” and try to think of this as better than it could have been otherwise news.

But, when my oncologist called me about a week later with the cytology and said it was positive, I said, “not as in good news, but positive for cancer, right?”

“Yes,” he said, “Positive for cancer so negative news.”

“Got it,” I said.

“The lymph node growth is small,” he said, “but the recurrence is real.”

Somehow I still feel optimistic. I don’t know if I’m in denial, if it’s all my loved ones lathering me with prayers, calls, and kindness or a bit of both. I am exploring low-dose chemotherapy combined with off-label drugs. I’m not so keen on clinical trials as I used to be given that I wasn’t able to be unblinded when I had cardiac, lung, and even Moderna vaccine related questions about it and when I was (or was not) on PARPs or immuno or both or just placebo.

All I know for sure is that dying is not dead, though I was irritated when my oncologist first said this. I am alive. I am living. This is the way my life is right now and maybe it gets better and maybe it gets worse. I don’t know that yet. And neither, really, does anyone!

“I’ve lived with someone with ovarian cancer,” I told my oncologist, “And dying isn’t the same as living – and can include a lot of misery as well as closeness and intimacy.”

He may treat hundreds and thousands with ovarian cancer but I have the disease and loved and lived with my Nana when she did. I can’t help but think of what those who love me will go through if I get worse, and worse, and worse, and worse. Is there any way we can all see this as life and living? I don’t want to waste my time worrying about death which will come for each and every one of us. But sometimes I do.

I’m trying to savor all forms of beauty and life, including honoring and acknowledging the shifts, changes, and even the breaking and withering. That too is part of life and is why I am glad my oncologist sometimes talks like a minister. Sometimes it takes me a minute or even months to hear and listen and trust and believe him.

Today, I walk the beach with loved ones and furry companions. Today, the sun is shining. Today, I have no horrible or distracting pain. Today, I am aware and awake and have had an exceptionally good week.

Today, I love these daffodils. Today, I can see they are not yet dead while also knowing they are dying. Dying is a also a kind of living and one I’m learning how to appreciate. And if I get more days and times, if my bloom and color returns, I will appreciate it even more. If it doesn’t, that too is a way of life and one we should all learn to notice, accept, and even embrace. We all know, “No one gets out of here alive,” but how many really integrate that knowledge into our way of living? I didn’t. And I hope you don’t have to get cancer to do so.

See below. The same flowers. Two types of beauty.

Cissy White

When not recovering or coping with her recent ovarian cancer diagnosis, chemo brain, and the other treatment-related side effects, Christine “Cissy” White works as Community Manager of the Parenting with ACEs community on ACEs Connection and blogs at www.healwritenow.com. White has been published in The Boston Globe, Spirituality and Health, Ms. Magazine, The Mighty, To Write Love on Her Arms, Elephant Journal, the Center for Health Journalism, and ACEs Too High. She is the 2019 recipient of the Touching Trauma at Its Heart Award, given by the Attachment Trauma Network for her work advocating on behalf of families coping with traumatic stress from developmental trauma. White has led Parenting with ACEs, Parenting After Trauma, and Writing to Heal workshops and speaks passionately about the need for first-person perspectives and the power of lived expertise. Her survivor-led advocacy has been written about in The Atlantic, Huffington Post, and The Mighty.

Patient Profile: Barry Marcus’ Multiple Myeloma Journey

March 26, 2021/in Patient Stories, PEN Blog /by Kara Rayburn

Patient Profile Barry Marcus’ Multiple Myeloma Journey from Patient Empowerment Network on Vimeo.

Empowered patient, Barry Marcus, shares his multiple myeloma journey from searching for a diagnosis to how he is managing his disease today.

Transcript:

In May of 2014, I was signed up to do a charity bicycle ride in Portland for MS with my cousin, her husband, and her son, who has an MS. And about a week before the ride, I started feeling exhausted for no apparent reason, terrible fatigue. All I could really do was lay on the couch and this was completely anomalous for me. I didn’t really have any other symptoms. I didn’t have a cough or a fever, chills, sweating, anything.

After about three or four days I got an appointment with my primary care physician. I went in to see him and he did a few blood tests and the blood tests all came back normal. And he was baffled, he really didn’t understand what was going on. I think he did a test for zika virus, that was going around at the time. I asked him if I could have mononucleosis and he was basically pretty stumped, and really didn’t have any recommendations to go forward.

So, I went home, I got back on the couch, and when I still felt the same way after a week, I called up another appointment and found that he was on vacation. So I went to see one of his colleagues and she did some more blood tests. And at that visit I said to her, “When someone starts feeling like this just out of the blue your mind goes to very dark places”. I said, “Could I have something like leukemia?” and she said, “Oh no”. And that was that. Basically I felt cut adrift and the message was it’s too bad to be you. There’s another version of that that I won’t say.

And then after about two weeks, I started to feel better. The fatigue went away, I got back on my bike, and was able to go to work and be productive. So I just sort of shrugged my shoulders that this is just one of those strange things that doctors aren’t able to explain.

Then, probably about February or March of 2015, I started getting some pains in my neck. If I pulled over a sweatshirt and it caught on my head, I’d get a pretty serious pain in my neck. And as a couple of months pass, this pain got worse, especially when I rode my bike. And I thought well maybe it’s from all this bike riding and having my neck in a strange position.

So I didn’t really follow up at that time. About maybe in June, I went back to my primary care physician and told him about my neck and he sent me for an x-ray at that time. No other imaging, just an x-ray. And he told me that I had minor disc degeneration in my neck and that physical therapy would probably take care of it. So he sent me the physical therapy, and I did physical therapy for a couple of weeks and this pain in my neck did not get any better at all. And then one night I was walking my dog, and I got a, how can I describe it, it was a numb feeling down my left arm. It wasn’t really painful, felt a little electrical maybe, and I knew that wasn’t a good thing.

So I called up the advice nurse, she had an on-call physician call me back. He said you have to go in for an MRI and I’m going to set that up for you in the morning. In the morning, I went for the MRI and when I got out of the tube I went over to the technician who’d done the test and I said what do you see? And his face turned ashen, basically. And he said well I don’t interpret these you know, I just run the machine and you need to see your doctor. It turned out I had a solid tumor in my neck between C4 and C5, about the size of a walnut, and it was pressing on my spinal cord. And I got a call shortly thereafter from my primary care physician who said you need to go see a head and neck specialist and I’ve got that set up for you. And it went in to see him and he said yeah I’m sorry to tell you that you have what appears to me to be multiple myeloma.

So at that stage, I’m sure that I had had this for about a year. And in addition to the tumor in the neck, I had I guess they call them lytic lesions, I had what are essentially smaller tumors in my ribs and on my sternum. They did a PET scan and it’s pretty widespread. And they said the first thing that you need to do is to get radiation therapy to get rid of this tumor in your neck. The head and neck specialist that I saw said that it was very likely that we could get rid of the tumor and he said oh and you’ll be back on your bike in no time.

I felt like that was maybe true or maybe not true, that he was doing his best to encourage me that this wasn’t the end of the world, and of course, I was devastated. I went for radiation therapy for the tumor, I had ten treatments. To make a long story short, the radiation was very successful. I’m going to have to otherwise describe it as it melted the tumor away. It was gone and the next phase was going to be chemotherapy.

I was assigned to an oncologist through my health plan, and I don’t want to be culturally insensitive in talking about this, but his English was not his second… first language. And I had a very hard time understanding him, especially on phone calls where I couldn’t understand him at all. I was feeling pretty down at that point because my primary care physician hadn’t followed up with me, and now I have an oncologist that I’m having problems communicating with, and they provided me with what seemed to me like a cookie cutter – this is the plan that we put everybody through type of chemotherapy.

I wanted to find out much more about it, so I’m very fortunate to have a sister who’s an MD and at the time, before her retirement, she worked at Montefiore Hospital in New York. I called her and she said well I’m good friends with an oncologist here and I want you to talk to him, which I did and his name is Shalom Kalnicki at Montefiore. And he became what we started to call my New York team and I bounce things off of him. The first thing he said was you really do need to get a second opinion and I’m going to set you up at another health provider that I have a lot of confidence in, that I’ve known people there for years. He said I wouldn’t take the chemotherapy that they’re suggesting until you talk to them.

Well that was…I got an appointment for the second opinion, but it was about a month away. That was an agonizing month because I knew I had these lesions, that I had myeloma, and I wanted to jump on it and get immediate treatment, but I didn’t. I waited. I went in and the physician I saw at the second Health Plan, I really liked a lot and she spent a lot of time with me. She looked at some of the other tests that had been done, and basically said yeah your health plan is on the right track, I would go ahead and start it. So I did, but again I frankly felt that if I stayed with my health plan and they were going to kill me.That I was sort of a cog in the wheel, that they basically treated everybody the same way, whether that’s true or not, I don’t know, but that’s how I felt.

And as it happens, August of 2015 and I was turning 65 in September. And it turned out that turning 65 and becoming medicare-eligible, was what they call a qualifying event to change your health plans outside of Open Enrollment. I have to credit CalPERS for that because I went to see them about what my possibilities might be ‘cause I didn’t want to wait till January to get a new Health Plan through Open Enrollment. A woman there was extremely helpful and she told me this information, and so I did change in September I got onto a new health plan that I had been in many years ago that I really liked. What CalPERS had removed from their list of approved providers because of cost, but at that point, they were back. So, I got back in this plan that I’ve been in many years ago, got hooked up with a terrific hematologic oncologist September 1st, and started working with him.

I wound up getting an autologous stem-cell transplant in February of 2016, about 5 years ago, and it produced…I was in the hospital for two weeks. The other health plan that I had been in, if I had a stem-cell transplant through them, they were going to send me 90 miles away and it was an outpatient procedure. I would have had to stay in a rental apartment for 30 days. So, I felt really good about changing health plans. That’s a piece of advice I would give to people is to really do some research and find out in your area where the best providers are, who they are, and see if you can hook up with them.

So after the stem-cell transplant, I had what they called a very good partial response. I was in remission for a year-and-a-half, at which time I didn’t need to be on any maintenance medications and felt great. I got back on the bike doing, you know, up to 50-mile rides and it was good.

But after a year-and-a-half, that was 2017, I relapsed and I had to go back on a chemotherapy regimen that was oral drugs. It was a 3-drug regimen and it kept my myeloma numbers down pretty significantly. Then I would say about a year ago, that regimen stopped working, which is very common, that I came to learn, in myeloma patients that you can go through many many many different treatment regimens during the course of your illness.

So about a year ago, my oncologist switched me to a different regimen that required infusions. So now I’m on IV infusion 3 out of 4 weeks a month and they’re very, very effective on what I would call complete remission. These are Kyprolis, Darzalex, and Dexamethasone. The worst side effect is neuropathy, which is also I’ve learned very common in myeloma treatment. Most people get neuropathy. Mine’s not too bad and it’s mostly in my feet and doesn’t prevent me from riding or walking and doesn’t affect my balance, so I feel, again, pretty fortunate there.

We’re going to stay on that regimen until it too stops working which seems to be inevitable, but I’m very encouraged by lots of the research going on for new myeloma treatments. So I guess, most people know there’s no cure, but they call it manageable and that brings me to the present.

A New “New Normal”: COVID-19 Vaccine Guidelines and Cancer Patients

March 8, 2021/in Carly Flumer, Featured Network Manager, PEN Blog /by Carly Flumer

Editor’s Note: This blog was updated 1/31/22 to reflect current vaccine guidelines.

As we enter the 1-year mark of living in a pandemic, there have been a lot of changes in a world that has seemed stagnant, void of time. The inadequacies in healthcare that have been hiding behind the transparent curtain are now front and center, including health disparities, as well as access to and quality of care. We have also witnessed an influx of information about COVID-19 and the vaccine, and as cancer patients, it makes everything that much more complicated.

Luckily, there are trusted resources we can turn to for guidance on our most pressing questions:

What are the current vaccines? What age groups are eligible to receive them?

Moderna: 18+ years old
Pfizer-BioNTech: 5+ years old
Janssen (Johnson & Johnson): 18+ years old

How many doses of each vaccine are given and how far apart?

Moderna

Primary Dose: 2 shots, 28 days apart
Booster Dose: Everyone ages 18 years and older should get a booster dose of either Pfizer-BioNTech or Moderna (COVID-19 vaccines) 5 months after the last dose in their primary series.

Pfizer-BioNTech:

Primary Dose: 2 shots, 21 days apart
Booster Dose: Everyone ages 18 years and older should get a booster dose of either Pfizer-BioNTech or Moderna (COVID-19 vaccines) 5 months after the last dose in their primary series. Teens 12-17 years old should get a Pfizer-BioNTech COVID-19 Vaccine booster 5 months after the last dose in their primary series.

Janssen (Johnson & Johnson):

Primary Dose: 1 shot
Booster Dose: Everyone ages 18 years and older should get a booster dose of either Pfizer-BioNTech or Moderna (mRNA COVID-19 vaccines) at least 2 months after the first dose of J&J/Janssen COVID-19 vaccine. You may get J&J/Janssen in some situations.

If I am currently undergoing treatment, can I get the vaccine?

Yes, as long as components of that vaccine are not contraindicated. Contraindications include:

Severe allergic reaction after a previous dose of an mRNA or viral vector COVID-19 vaccine or any of its components
Immediate allergic reaction of any severity to a previous dose of an mRNA COVID-19 vaccine (both Moderna and Pfizer-BioNTech) or any of its components
Immediate allergic reaction of any severity to polysorbate
Immediate allergic reaction of any severity to any ingredient in the Janssen (Johnson & Johnson) vaccine such as polysorbate

If I am not currently undergoing treatment and still have cancer, can I get the vaccine?

Yes, as long as components of that vaccine are not contraindicated. See contraindications above.

If I no longer have cancer, should I get the vaccine?

Yes, as long as components of that vaccine are not contraindicated. See contraindications above.

Does it depend on when I get the vaccine based on what type of cancer I have/had?

Yes, for guidelines on specific cancers, visit this link.

Should my caregiver and/or people whom I live with also receive the vaccine?

Yes, when the option becomes available to them.

If I have previously had COVID-19 (tested positive), can I get the vaccine?

Vaccination should be offered to persons regardless of history of prior symptomatic or asymptomatic COVID-19 infection.

Am I fully protected after receiving the vaccine?

At this time, researchers are unsure of how much protection the vaccine provides. Therefore, it is still recommended to wear a mask, wash yours hands for at least 20 seconds, and practice social distancing.

However, vaccinated patients who are exposed to someone with suspected or confirmed COVID-19 aren’t required to quarantine if they:

Are fully vaccinated (i.e., ≥ 2 weeks after receiving the second dose in a 2-dose series, or ≥ 2 weeks after receiving one dose of a single-dose vaccine) AND
Are within 3 months after receiving the last dose in the series AND
Have remained asymptomatic (without symptoms) since the current COVID-19 exposure

What are common side effects of the vaccine and how long do they last?

Side effects can include:

Pain and swelling on the arm where you received the shot
Fever, chills, fatigue, and headaches
Most post-vaccination symptoms are mild to moderate in severity, occur within the first three days of vaccination, and resolve within 1–3 days

Of course this list is non-exhaustive, and there are a lot more questions to be asked and more answers to be found as frontline workers continue to study the virus and its variants. For the latest updates, follow the Centers for Disease Control and Prevention (CDC) website, as well as American Society of Clinical Oncology (ASCO) and the National Comprehensive Cancer Network (NCCN). We’re in this together, one day at a time.

Sources:

Cancer-Specific Resources:

Carly Flumer

Carly Flumer is a young woman who was diagnosed with stage I papillary thyroid cancer at the age of 27. She recently received her Master’s degree from Boston University in Health Communication and received her Bachelor’s from George Mason University in Health Administration and Policy. While being diagnosed with the “C” word at such a young age was a surprise, as it would be to anyone, she found strength, support, and inspiration in sharing her cancer journey on social media. As a result of her health outcome, she looks to advocate for other cancer patients through education, research, and health literacy.

Will Telemedicine Mitigate Financial Toxicity for Prostate Cancer Patients?

March 5, 2021/in PC Access and Affordability, PC Newly Diagnosed, PC Programs, PC TelemEDucation, PC TelemEDucation Survivorshop, PC Videos AA, PC Videos ND, Prostate Cancer /by Kara Rayburn

Will Telemedicine Mitigate Financial Toxicity for Prostate Cancer Patients? from Patient Empowerment Network on Vimeo.

Prostate cancer patients often have financial costs associated with their care. Expert Dr. Leanne Burnham details ways that telemedicine reduces financial toxicity for prostate cancer care — and shares some of her own experience as a cancer patient when she was a doctoral student.

Related Resources:

What Are the Benefits of Telemedicine for Prostate Cancer Patients?

What Are the Limitations of Telemedicine for Prostate Cancer Patients?

Dr. Leanne Burnham’s Top Tips for Your Prostate Cancer Telemedicine Visit

Transcript:

Dr. Leanne Burnham

So speaking about financial toxicity, let’s just talk about it when it comes to medical treatment in general. Financial toxicity comes in many forms, and I can speak to this a little bit on a personal level, I myself was a cancer patient when I was a doctoral student, and I had to take nine months off of school and do chemo and surgeries, and the whole nine yards and the strain that puts financially on a family depends on what kind of safety guard you have in place ahead of time. When you’re not expecting to get cancer when you’re a young person, it can throw a monkey wrench for sure. And so in my own personal situation, my husband owns a barbershop, and he doesn’t have sick days, right, so if he doesn’t go to work, leave and he doesn’t come home with money. So that time that I was sick, that was stressful on us, because he didn’t necessarily want to call off, but he wanted to call off so that he could be with me, and he’s very concerned after I’m having my treatment, but at the same time, he needs to go to work. And so the stress that that creates for the patient, for the caregiver, that doesn’t necessarily lend itself to the healing process, because what we know is that stress kills literally, quite literally, and I’ve published on that topic before. As it pertains to prostate cancer, we know that chronic stress, cumulative stress spread out over time dysregulates your hormone function and leads to all kinds of disease, metabolic diseases, cancer down the road.

So financial toxicity is a real thing, and there are ways that telemedicine can help to mitigate some of that financial toxicity. So, for example, when you don’t have to call off work, let’s say to make your televisit, then that’s a really great thing. When you don’t have to try to find child care so that you can go to your appointments because now at the hospital setting or the doctors’ offices, you can’t bring your kids with you like you used to be able to just…okay, come sit in the waiting room, or come in the room. It’s not like that you can’t even enter the building most of the time, and so a lot of people have to try to find child care if they were going to go to the doctor in-person. But the benefit of telemedicine is you don’t have to do that, so that’s a saved cost. I know myself; I’ve taken televisit appointments during my lunch break while I’m in lab, and that just works out a lot better, it’s not a day that I have to call off work in order to make that happen. The other way that telemedicine can help reduce cost is there can be reduced visits to, let’s say, urgent care or the emergency room.

I can think of a few situations during this quarantine era with my kids even where certain symptoms come up and I think, “Oh, I really need to take him to urgent care,” but I schedule a video appointment with their doctor, the doctor goes over a symptom checklist and says, “You know what, you don’t need to actually bring them in for an appointment, just bring them in and have them do this lab work real quick and just be in and out, and then we’ll let you know if there needs to be a follow-up.” And then most of the time, there doesn’t need to be a follow-up, or there’s just a prescription that’s needed, and you avoid the extra cost of what going to urgent care would have been, going to the emergency room would have been. And you’re reducing your exposure to COVID, which is not a financial toxicity question, but that’s a benefit that telemedicine has as well.

Patient Profile: Alexis Chase, PhD

January 15, 2021/in GYNC Blog ND, GYNC Newly Diagnosed, Gynecological Cancers, MPN Blog ND, MPN Newly Diagnosed, Myeloproliferative Neoplasms, Patient Stories, PEN Blog /by Jennifer Lessinger

Patient Profile

Alexis Chase, PhD

“To be empowered you have to be open, to want to do it, and to accept where you are.” – Dr. Alexis Chase, An MPN Empowered Patient

Dr. Alexis Chase has had a pretty interesting life, but she doesn’t think that makes her unique. She says she thinks all women have interesting lives. Born congenitally blind in her right eye she was given the name Alexis Elizabeth Lucia Chase. “I’m very proud of my name,” she says explaining the origin. Alexis was the name of a doll her mother had as a girl, and it means protector of mankind. Elizabeth is a family name, and Lucia represents Saint Lucia, the patron saint of the blind. Her mother was a nurse and her father, who was the first to recognize she had a vision issue, had a degree in biology. She was very close with her parents who instilled in her a strong foundation in her Roman Catholic faith. While she was born in Connecticut, she spent most of her adult life in Georgia as a divorced mother who built a successful 27-year career in the prison corrections system. She worked her way up to warden and earned two PhDs, one in religious counseling and one in criminal justice and corrections. After her retirement she became an international advocate and consultant of gender and women’s rights issues that include vocational training, post-incarceration reintegration, and female prisoners with children. She has travelled as far as Afghanistan in her advocacy work, and she is also the proud nana to a cat named Nathan Edgar Chase. She’s done a lot, and much of what she’s accomplished, she’s done while living with cancer.

The first time she was diagnosed with cancer was in 1976. She was in the first trimester of a high-risk pregnancy when she was diagnosed with ovarian cancer. Her doctors thought it would be best to terminate the pregnancy, but she refused. She was determined to have the baby, her daughter, and as soon as she was born, Dr. Chase began treatment for her cancer, opting for an experimental drug that she says saved her life.

At the time, her parents, her desire to live for her daughter, and her strong faith gave her the support she needed. “They were right there with me,” she says of her parents who she is grateful to for her faith. “It’s my great equalizer. My rope of hope,” she says and adds that she can pull on her faith anytime and in any place. “You’ve got to believe in something greater than yourself because definitely we’re not it,” she says.

She’s had no recurrence of the ovarian cancer, but in 1996, during a regular wellness checkup, she was diagnosed with myeloproliferative neoplasms (MPNs), a group of blood cancers that affect the function of bone marrow and can cause a number of complications. In Dr. Chase’s case her MPNs includes iron deficiency, anemia, diseases of the blood and blood forming organs, and hypothyroidism. MPNs are chronic conditions that can transform into another blood cancer and can affect people at any age but are more common in older adults. MPNs are also progressive. Dr. Chase had no symptoms for the first four years after her diagnosis, and wondered if she’d been misdiagnosed, but in 2000 she says she just started to feel like something wasn’t right and that’s when her blood counts started to change. She began taking medication, but in 2020 it stopped working and her cancer team worked to find other medications and therapies to treat her.

MPNs are rare and she doesn’t know anyone else with the same diagnosis, but she says she has an incredible support network through her daughter, her friends that are like family, her church, and her cancer team. “They take great care of me,” she says, but she also takes great care of herself. In fact, she’s very meticulous about taking care of herself. She carefully takes her medications, and she makes herself a priority. She focuses a lot on her mental health and she stresses the importance of mental health for all cancer patients. She says she finds three ways to laugh at herself every day and she chooses six words every day that represent how she’s doing and to help her feel empowered. A recent example, “I feel surrounded by grace today”. Also, part of her self-care is taking the time to listen to calming and soothing sounds and inspirational messages and quotes.

She says it’s a blessing to have the cancer she has because she is able to handle it and it makes her take time to smell the roses. She’s handled it so well that during her career as a prison warden she never let on that she was sick. She managed to schedule her appointments around her work so no one would know. She didn’t want her illness to affect her career.

Always an empowered patient, she’s been known to walk out of a doctor’s office when a situation doesn’t feel right. “It’s important for people to feel like they are being heard and more importantly that they are being listened to.” She says “It’s also important to know what’s going on with your care. You know your body better than anybody.” Dr. Chase likes the Patient Empowerment Network (PEN) because of the resources it provides to help others feel empowered in their own care. “I found PEN and love that I can access it anytime,” she says. She feels it’s important for patients to take charge of their own care plans. “To be empowered you have to be open, to want to do it, and to accept where you are,” she says. Her recommendation to other patients is to read, and comprehend, everything they can about their illness. “If you don’t understand it, you need to have someone explain it to you,” she says and also recommends keeping a journal. “We have to have something tangible. We can’t remember everything.”

While she continues to accomplish a great deal while living with cancer, it’s not always easy. “The chronic cancer fatigue, it will get me. I fight it because I feel like once I give in it would overtake me,” she says. She does experience shortness of breath and plans her days around her energy level. “It slows me down, but I don’t let it stop me. I push myself because I know the next day or the next day I won’t be able to.” Along with continuing her consulting and advocacy work, Dr. Chase loves to travel and hopes to go to Turkey to see the Virgin Mary’s house. “You never know what God has laid out for you,” she says. “I’m still here. I’ve been symptomatic for 20 years and I’m still here.”

Bright Hope on the Horizon – Part Four

January 14, 2021/in PEN Blog, Sajjad Iqbal /by Sajjad Iqbal

See the beginning of Sajjad’s story in Part One, Part Two, and Part Three.

Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

(Jan 2020)

In February 2014, two groups of scientists in New York City presented the early data of what can only be described as a phenomenal study with phenomenal results.

In a study using sixteen adult leukemia patients, scientists took samples of each patient’s T-cells and samples of his or her cancer cells. Under laboratory conditions, they trained those T-cells to recognize certain specific traits of that patient’s leukemia cell and then attack to kill it—it was like teaching a drug-sniffing dog to find the cache of heroin. These were called “smart T-cells.”

The next step was crucial, dangerous, and amazingly clever.

The researchers cloned millions of these specially trained T-cells and then went back to the patients and gave them very toxic chemicals that destroyed their “dumb” T-cells—those that were still fooled by the cancer’s camouflaging. They then replaced them with the trained smart T-cells.

Once infused, the trained T-cells set out like an elite commando force equipped with exact GPS coordinates and hunted down and killed the cancer cells.

The success rate of achieving a complete response was an astounding 88 percent!

The incredible success of that small study, and several others since, has sparked an explosion of interest and further studies by various medical centers and pharmaceutical companies worldwide, who are spending billions of dollars in similar research. These investments are sure to be returned many times over, of course. But it can only mean good things for cancer patients. Costs for adoptive T-cell transfer treatments now are prohibitive for individuals—upwards of $500,000 for one patient, which is totally unacceptable. But that will change in the near future.

And there were complications, of course, with ominous results for one patient.

In one unfortunate patient, a man from New York City with Her2-positive colorectal cancer, doctors infused T-cells trained to seek out and kill Her2-positive cancer cells. The man went into respiratory arrest within fifteen minutes. His health continued to deteriorate over the next few days despite the best efforts of the medical experts. He died after four days when his lungs shut down completely. There was nothing they could do to save the patient.

An autopsy showed that the patient’s normal lung cells had traces of Her2. The “smart” T-cells had been attacking and killing the healthy lung tissues as well as the cancer.

These trained T-cells are like heat-seeking missiles. They will attack and kill as they have been trained to do—and there was no reversing this once they were set loose.

You lose any control over the missile once it is fired.

This unfortunate incident led to a temporary halt of all further experimentation in this area. The focus was shifted to try to find a way to control these smart T-cells after they were infused into the patient’s bloodstream. How do you stop these commandos if they go rogue? How do you destroy a wayward missile?

A few different strategies have been developed to accomplish that. One of those is the development of what is called a “suicide gene”—and it is truly the stuff of science fiction. Now scientists can tag T-cells with this suicide gene. If they go haywire and start attacking normal cells, doctors can prompt them to destroy themselves, or commit suicide.

The first couple of the CAR-T Cell Therapies, as these are called, have already received an FDA approval and the newer & better ones are sure to follow.

It is nothing short of amazing. Today we are on the cusp of advances that were not even imagined just a few years ago. Now when someone disconsolately calls me for advice and tells me they have been given no more than two years to live, I tell them not to panic or lose hope. I emphasized that two years is an eternity when it comes to medical advances, the way science is exploding in its efforts to cure cancer.

“Take heart,” I tell them. “Every year, new drugs and modalities are being developed. In two or three years, you have no idea what new miracle drug may come out.” I suggest optimism and advise they focus on positive thoughts, avoid negativity and depression, refuse to panic, eat healthily, remain physically active, meditate, enjoy every little pleasure in life, and, as much as possible, avoid stress. Most of all, do not give up hope.

All that will boost your immune system and will go a long way toward beating this dangerous enemy.

Two years—or even a year—given the ways that science is moving ahead, is a terrific pronouncement. This, in no way, is meant to paint an unrealistically rosy picture. Cancer has been and continues to be an extremely deadly disease. Even though the death rate from cancer has gradually and steadily declined since 1990, there are still far too many patients dying from it. In the United States, cancer continues to be the second biggest cause of death, behind heart disease only. Over half a million patients die from cancer each year in the United States alone. More than eight million lives are lost worldwide.

I am fully aware of all that. Yet, there is no doubt that we are entering a much better and far more hopeful era. At no other time in the history of medicine have we been this tantalizingly close to achieving a major victory against cancer, a game-changing victory that could, possibly forever, change the cancer outlook.

I believe this with all my heart.

Sajjad Iqbal

Sajjad Iqbal is a physician and cancer survivor. Almost 17 years ago, Sajjad learned that he had an extremely rare and most malignant type of parotid cancer called Salivary Duct Carcinoma. He was given a 30% chance of surviving for 2 years. Because of Sajjad’s medical training and his unwavering sense of hope & determination, he was no ordinary patient. Sajjad researched his condition and proposed a treatment method for himself that stopped the progression of cancer cells. Although Sajjad is still living with, and still fighting, the cancer, he continues to defy the odds with no end in sight. To inspire other cancer patients, Sajjad Iqbal has chronicled his amazing cancer journey in the form of a book titled, “Swimming Upstream, My Struggle and Triumph over Cancer and Medical Establishment.”

Patient Profile: Liz Sarris

January 11, 2021/in Chronic Lymphocytic Leukemia, CLL Blog ND, CLL Newly Diagnosed, Patient Stories, PEN Blog /by Jennifer Lessinger

Patient Profile

Liz Sarris

Liz Sarris knows the world of healthcare pretty well. Not only has she had a 40-year career as a nurse, but she’s also had a host of chronic illnesses, which means lots and lots of doctor appointments. As if that weren’t enough, Liz has also been diagnosed with cancer three times – with three different and unrelated cancers! “I’m being watched closely from many angles,” she says. “But the great news is I live to tell the story.”

Her cancer story began in 1988. Her primary care doctor found some unexplained blood in her urine and, unable to dismiss it, referred Liz to a urologist. A scope of her bladder revealed a tumor that was about the size of a pea. Fortunately, it was non-invasive, had not invaded the bladder lining, and was removed. No treatment was required, but she did have to be monitored regularly. For the first two years she was checked every three months, then every six months for the next several years. After that she graduated to annual checkups that continue to this day.

Fast forward to 2014 when she was diagnosed with chronic lymphocytic leukemia (CLL). This time, Liz was seeing an endocrinologist for a thyroid issue when the doctor noticed some abnormalities in her blood work. Further testing led to her CLL diagnosis, which, so far, hasn’t required any medications or treatments other than quarterly check ins. “It is a watchful waiting situation,” she explains.

Then in 2017 things took a turn. Liz’s gastroenterologist, who she sees regularly for two chronic gastrointestinal issues, said that there was a spot on her scans that needed to be checked out. It was a spot they had been watching, but now it was starting to change. The spot turned out to be a neuroendocrine tumor of her pancreas. It was a slow growing tumor and not aggressive, but it was malignant and had to be removed, and there was a chance that it was a lot worse than the doctor thought it was. It meant major surgery that was not at all routine, and because her tumor was in the middle of her pancreas, it was possible that she might lose part of her pancreas and her spleen. Liz wanted the best possible outcome from the surgery, which meant keeping as much of her pancreas as possible, so she started to search for a surgeon. “I wanted to see the right people who were specific to this type of cancer and who do neuroendocrine tumors every day,” she says. “If he’s going to poke around my pancreas, I want to know he’s doing 10, 12, 15 of these surgeries a month.”

First, Liz narrowed her search geographically. She lives in an area that is relatively close to several high-quality medical facilities, and she knew that she didn’t want to be too far away from her family and support system after such a big surgery. Then she started asking questions and doing research. “Because I had engaged myself with good local physicians, I reached out to them for referrals,” she says. She asked her doctors who they would send their wives to and who they themselves would go to. Then she started calling surgeons and made appointments to interview three of them. When she had it narrowed to the surgeon she felt best about, she visited him a second time. “I don’t know if it’s the nurse in me or just who I am,” says Liz about her research process. She says that the doctor she chose made her feel confident, and his approach was more hopeful because he was willing to perform the surgery using a rare technique that meant he would remove the tumor from the center and then reconnect the two sides of her pancreas. Her doctor was upfront with her about all the possible risks and made sure she knew that his plan could change if the surgery revealed a different situation than they were expecting. “Do whatever you have to do to give me the best chance at a healthy life,” she told him and added that she hired him to do the job he would do for his mother, his sister, or his daughter and that she didn’t want to see him again in five years.

Her eight-hour surgery was a success. The tumor was removed, and her pancreas was put back together in what Liz describes as a “creative way.” After her surgery she didn’t require any treatment other than regular monitoring, and so far, all her scans have been good. She credits her successful outcomes in part to having a supportive family, good insurance, and good doctors, but she didn’t have good doctors by accident. She’s very proactive in her own healthcare. “I had the recipe for a good situation, but that doesn’t mean I didn’t have to do the research,” she says.

Her background as a nurse helped her know what questions to ask, but she wants others to know they can ask the same questions and can be just as informed. “You can navigate your care more than you think you can,” she says. “You really have to utilize your resources.” Liz says resources like the Patient Empowerment Network, where patients have access to free online tools such as a checklist of questions to ask the doctor, are great for cancer patients. “There needs to be more empowering,” she says. “Much of what I’ve done my entire career is try to empower patients.” She says that being empowered means being educated, identifying your expectations, and asking questions. “We are willing to ask questions of our auto mechanics about our car’s maintenance and repair, but not of our doctors about our own bodies,” she says.

These days Liz is adjusting her expectations for her own life. In March, Covid-19 interrupted the career she’s been so passionate about when her oncologist told her it wasn’t safe for her to continue to work during the pandemic. “This is not how I anticipated retiring,” she says. With her unique perspective as experienced patient and medical professional, she has a lot of knowledge to share, so now Liz is exploring how she can continue to help other patients learn more about how to navigate the healthcare system and take charge of their own care plans. She’s empowered to empower others.

Bright Hope on the Horizon – Part Three

January 5, 2021/in PEN Blog, Sajjad Iqbal /by Sajjad Iqbal

See the beginning of Sajjad’s story in Part One and Part Two

Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

(Jan 2020)

We all are familiar with the miracle of modern antibiotics. Most infections, even the serious and life-threatening kind, can usually be cured by the proper use of antibiotics. But antibiotics cannot work without help from the patient’s immune system.

Every day, literally hundreds of times a day, various bacteria and viruses invade our bodies. Yet, we are not constantly sick. Why? Because our immune system is always on guard, ready to fight and destroy every potential enemy. The invaders are promptly killed and the threat is eliminated without us ever becoming aware of it.

It is only when the bacteria manage to establish a beachhead that we show signs of illness. Even then, the immune system plays a critical role in helping the antibiotics conquer the infection. Antibiotics simply cannot work if the immune system is diseased and unable to help, as in HIV. That is precisely why in HIV even a minor infection can threaten the patient’s life despite the use of antibiotics. Our immune system is the most powerful, sophisticated, efficient, and elite fighting army one can imagine.

So, why does it not fight the cancer and kill it off? For decades, medical scientists have struggled with precisely this question. Why was the immune system actually ignoring the horrid invasion? Why was it sitting quietly by while the cancer invaded and destroyed one vital organ after another until it killed the patient?

It has been only in the last few years that we have realized what was happening.

Cancer is wily and cunning. That, of course, is not a surprise. But researchers have begun to understand that cancer cells actually make themselves invisible to the immune system. We still do not have a complete understanding as to how, but we have learned a few things.

This we do know: The immune system fights off various invasions through a system of checkpoints. Say, for example, you have strep throat. When the germs first invade, an alarm is triggered which serves to mobilize the body’s immune forces. They attack the strep germs and kill them off. Soon, the immune forces reach a checkpoint where they must stop to receive fresh orders. If the threat persists, the order will be to continue the attack. On the other hand, if the threat has been eliminated, that information will be conveyed to the immune forces, thereby shutting them down. Obviously, we do not want our army to keep firing after the enemy is dead. It will only cause harm to the civilians. Similarly, our immune system must not go on unchecked in order to prevent damage to the normal and healthy tissues.

So, our immune response is a pattern of repeated starts and stops regulated by a series of checkpoints.

Scientists have learned that cancer has the ability to trigger checkpoints or manipulate the checkpoint signals. As soon as the immune forces attack the cancer, it initiates a checkpoint signal to terminate that immune response. Cancer has a way of making the checkpoint say—to continue the analogy—”No problems here. The threat is gone. All clear now.”

So far, we only know about a couple of different ways this is accomplished. But it is very likely that the wily cancer has many other ways to fool the immune system. Our knowledge is still growing by the day.

Once scientists understood that mechanism, they began to develop medicines that neutralized the false checkpoint signals created by the cancer, thus allowing the immune system to continue to attack and kill the cancer cells. These drugs are called checkpoint blockade therapies.

In clinical trials, these medicines have produced a 66 percent success rate against an extremely deadly cancer, malignant melanoma. This is an astonishing success, and we may even improve upon that success as we learn to use different drug combinations and newer and better drugs are developed. Each day brings the dawn of a new hope. One of the newer checkpoint blockade drugs, Pembrolizumab (Keytruda) has consistently shown encouraging results in a variety of, hitherto untreatable, cancers.

Another prong in the battle that has brought jaw-dropping positive results is something called adoptive T-cell transfer. This is the stuff of science fiction. And the exciting results it is producing have turned cancer research on its ears.

Using T-cells to kill cancer will put medicine on the cusp of being able to say we have found a cure for cancer. Adoptive T-cell transfer therapy is the most promising technique we have to finally attain the Holy Grail of cancer medicine—to be able to utter those three magical words to the patient: “You are cured!”

T-cells are our immune system’s killer cells. Think of them in a way as an elite commando force that can seek out and destroy the enemy. The challenge is this: because of mechanisms we are still trying to fully understand, cancer cells camouflage themselves from T-cells. So, how do you make the T-cells “see” this enemy called cancer? If they can see it, they will attack it and destroy it.

Sajjad Iqbal

Bright Hope on the Horizon – Part Two

December 21, 2020/in PEN Blog, Sajjad Iqbal /by Sajjad Iqbal

Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

Click Here to Read Part 1

(Dec 2020)

I would like to think—hope in fact—that no future cancer patients will have to fight the way I did to get certain treatments, that doctors today could help them prevent that. Oncologists now universally accept this novel concept that each patient’s cancer is different and must be treated differently. Treatment needs to be based, not on it’s location, but on the unique pattern of gene mutations it exhibits. This understanding has led to the development and increasing usage of a test called Genome Typing. In the simplest explanation, genes are microscopic particles (nucleotides) located on the chromosomes of a cell. The genes instruct the cell to behave in a certain way and perform certain functions. Cancer alters, mutates, a gene to send a different signal to the cell so it performs, not its normal function, but a function suitable for the cancer’s growth. This pattern of Genetic Mutations is unique to each cancer. Discovering and, possibly, attacking these mutations is called Targeted Therapy. Let’s assume that one patient’s parotid cancer shows the same gene mutations as the other patient’s breast cancer. Therefore, both these cancers need to be treated with the same medicine. The location of the cancer is totally irrelevant.

The problem is that federal agencies and the health insurers are still stuck in the past. My cancer, the salivary duct carcinoma of the parotid is practically a twin of the ductal carcinoma of the breast. It stands to reason that a drug that worked against one is likely to work against the other too. Because breast cancer is very common and parotid cancer is exceedingly rare, it is far, far easier for researchers and drug companies to test a new drug against breast cancer than against parotid cancer. Therefore, they can present convincing data to the FDA to show that a particular new drug works against breast cancer and thus get the approval for its use in breast cancer treatment. Unfortunately, parotid cancer patients, due to their small numbers, are left out in the cold. There are plenty of drugs that are FDA approved for use for breast cancer but none for parotid cancer. This allows the health insurers to refuse payment for most new drugs for patients like me. It becomes an uphill battle, often futile, to fight. I am blessed to have had the wherewithal I did, but not everyone survives the fight.

The simple logic is that if a drug blocks Her2 and successfully treats Her2-positive breast cancer, its use should be approved for any cancer anywhere that is Her2 positive. Unfortunately, this simple logic is lost on many in the hierarchy. Lately, there have been some encouraging signs that the FDA is moving in this direction. Insurers are still slow to respond but ultimately they will. Tomorrow is looking better and brighter.

I think of the whole thing in this way: The evolution of cancer treatment is similar to the evolution of how we used telephones. Years ago, in the 1940s and 1950s, we had neighbors sharing the same line, first the crank-up type and then old rotary phones—party lines they were called. It would not be unusual to pick up the phone and learn that your next-door neighbor was already talking on it. You would have to wait—and hope that your neighbor would not blather on for another hour before you could make your call.

Later, we began to see home phones—one house, one line. But still, everyone in the house was on the same line. If you picked it up to make a call, you might hear your brother talking to his girlfriend. You couldn’t get on until he hung up.

Today we have cell phones and the days of the house phone are almost over; the concept of a party line is simply laughable.

Cells phones of today are highly personalized and sophisticated communication tools. They are configured exactly to specific users’ specifications: their own phone number; the exact amount of memory they need; the number and kinds of apps they want installed; their contact list; their choice of songs, photos, videos, and documents; and even their very personal and confidential data. It is a highly personalized gadget now.

So is cancer treatment.

And that wonderful news is why if there were a better time to have cancer, to have a doctor drop the bad news on you, it is today—right now.

Why is this happening?

On one front, medical science continues to make extraordinary strides. Each new kernel of knowledge accelerates and expands what was previously known—one new discovery leads to five more. Targeted therapy is one example—but a very good one.

On a second front, doctors have begun to expand their knowledge about how to marshal the body’s own defenses, its own immune system, to attack cancer.

Former President Jimmy Carter astounded the world in December 2015 when he announced he was cancer free. Only months before, he had said it was unlikely he would survive the late-stage malignant melanoma that had spread to his brain.

He might have astonished the general public, but medical insiders were not as surprised. Mr. Carter was the beneficiary of a new wonder drug, Nivolumab, and the relatively new concept of immunotherapy for cancer—checkpoint blockade.

Sajjad Iqbal

Bright Hope on the Horizon – Part One

December 17, 2020/in PEN Blog, Sajjad Iqbal /by Sajjad Iqbal

Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

(Dec 2020)

Let’s be realistic. There is never a good time to have cancer.

Even today, caution and years of fighting to beat the odds against surviving this insidious enemy have made it an almost certainty that no doctor will ever promise that the cancer will never return.

You will learn, in the good times, to say, “I’m cancer-free,” or “My cancer is in remission.” And you will hope the remission is permanent, but you will keep that to yourself.

You will not dare say, “I’m cured. It’s gone. I beat it. It will never return.”

I learned those rules as a physician and got personally reacquainted during my own struggle, so in due course, I learned to play by them. But the more years I survived and the more knowledge I gained, the more I got calls from friends and friends of friends of friends.

“How did you do it?” they asked. “What should I do?”

Very few people have been lucky enough to escape being touched in some way by cancer. They have a friend or a brother or a mother who died, they have an uncle who is in serious condition, or they know the nice woman down the street who was just diagnosed.

I’m happy to be where I am today—a survivor for many years. I’m gratified that people come to me for answers about what to do.

Now, today, this is what I can tell them.

Medical science is advancing at a break-neck speed. New and exciting discoveries are being made each & every day. We now have a broad and ever-expanding range of targeted therapies. Then there is this whole new field of immunotherapy that has improved the prognosis for so many cancer patients.

Today, we can look back on how we treated cancer as recently as the 1990s and equate it with the Dark Ages—a time when very little was really understood. By comparison to what we know today, treatments thought to be cutting edge in the 1970s and 1980s seem downright primitive.

In the 1960s and 1970s, for example, doctors treated cancer in a one-size-fits-all manner. There were only a handful of cancer killing chemotherapy drugs that were used to treat every form of cancer in a “one size fits all” thinking—and, of course, with horrible & debilitating side effects. More often than not, a cancer diagnosis was a death sentence.

In the 1980s, things began to change a bit. Doctors would treat breast cancer differently than say, lung cancer, which would be treated differently than kidney or bone cancer.

But that was missing the point as well.

Over time, doctors began to realize that it didn’t matter where the cancer began. They saw that each cancer had its own particular histology and its own unique behavior.

My cancer is a classic example. It started in the parotid gland but, under the microscope, looked just like the ductal carcinoma of the breast. The fact that it originated from the parotid gland, not the breast, is rather irrelevant. It is basically the same cancer and should be treated the same way. And later, when it spread to the lungs or the bones, it was still the same parotid cancer, not a lung cancer or a bone cancer. It just happened to relocate there.

My cancer had a life of its own. It was unique. It did not matter where it started from or where it migrated.

Once doctors began to see that, researchers were at the dawn of the new concept of targeted therapies. Each cancer was unique to each patient. The treatment should be individualized, targeted, against that particular cancer based on its unique characteristics, behavior, and vulnerabilities. One size does not fit all.

Click Here to Read Part Two

Sajjad Iqbal

Chronic Myeloid Leukemia (CML) Patient Profile

December 10, 2020/in Patient Stories, PEN Blog /by Jennifer Lessinger

You would never know that the subject of this Patient Profile is living with cancer, and that’s exactly the way he likes it. Very few people know this patient’s story, even though he’s been living with chronic myeloid or myelogenous leukemia (CML), an uncommon cancer of the bone marrow, for almost 8 years. He is the very definition of an empowered patient. He’s informed, involved, and utilizes the resources available to him. If cancer were a bull, he definitely would have taken it by the horns. He prefers to remain anonymous, but he believes so strongly in being an empowered patient, that he agreed to share his story to encourage others to take control of their own cancer care.

It was March 2013, when he went in for an MRI on an unsatisfactory hip replacement, that his cancer journey began. When the report came back it said that there was a bone marrow infiltration with a high probability of malignancy. “The word malignancy stuck out to me,” he says. He had no symptoms at the time, but he couldn’t ignore the report and knew he needed to take immediate action.

His first step was to confirm that he did indeed have cancer. Coincidentally, he was pretty well connected with a prominent oncologist who diagnosed him with CML, told him it was easily treatable, and referred him to another doctor for treatment.

Not being the kind of guy to accept his fate without thoroughly gathering information, he decided to get a second opinion, and was able to do so through another connection he had. The second doctor confirmed the diagnosis and the doctor referral.

Satisfied that he was in the best possible hands for his specific cancer, he began treatment taking one of the four tyrosine kinase inhibitor (TKI) medications commonly used to treat CML. Unfortunately, he started having intolerable side effects so, in August 2014, his doctor switched him to another TKI. While taking the new medication, he says his liver enzymes went through the roof and he was becoming concerned that he was running out of treatment options. However, once again, he was able to use his connections to get dosage instructions directly from the drug manufacturer, and with a simple shift in dosing, his problem was fixed. His liver enzymes returned to normal and he’s been living well ever since. “If I had to get a bad disease,” he says, “I got the right kind.”

His proactive nature toward his health was essential to the positive outcome he’s living with today. In addition, his connections to high-quality doctors gave him an advantage. He is grateful for that, but he’s also acutely aware that not everyone has the same advantages, and that’s why he appreciates the value of Patient Empowerment Network (PEN). He came across the free programs and resources available on the PEN website while doing his own research about CML. He believes that anyone who is sick should use whatever resources are available to get all the information they can. “The Patient Empowerment Network is a source of information and potential support,” he says. “I’ve told my friends and doctors about PEN because I want to help other people. To fail to do so would be a shame.”

He feels a sincere and urgent duty to pay forward his good fortune and credits that sensibility to his parents and his Jewish heritage. Describing himself as only moderately observant from a religious standpoint, he says he was raised to subscribe to the philosophy that there are only two kinds of Jews. “You either need charity or you give it,” he explains. In his life, he’s been fortunate financially, and so he feels compelled to give. “It’s just who I am, I thank my parents,” he says.

His charitable giving is also motivated by personal loss. His first wife died from an aggressive form of breast cancer, and he later lost a very close friend to myelodysplastic syndromes (MDS) and acute myeloid leukemia (AML), which he refers to as a death sentence. The pain of that loss continues to be palpable and has driven him to set up a foundation, named after his friend, at a leading cancer center that does cutting edge research on MDS, a group of rare and underdiagnosed bone marrow disorders.

Now at 76, with his CML in remission, he’s vibrant and busy and has no intention of slowing down. He continues to stay up to date on CML research because he believes it’s important to be informed about his disease. He serves in a one-on-one mentor program for cancer patients, and he also takes evening courses learning about topics such as the United States Constitution and the Federalist Papers. “I’m lucky,” he says. “With CML I will die with it, not from it.”

Jennifer Lessinger

Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.

The Warrior in Me Saved My Life

December 9, 2020/in Featured Network Manager, Honora Miller, MM Blog ND, MM Blog TC, MM Newly Diagnosed, MM Treatments and Clinical Trials, Multiple Myeloma, PEN Blog /by Honora Miller

After experiencing increasing fatigue over the course of several years, I started to miss gatherings with friends and family and got to the point of taking one day off a month from work to sleep all day. This was unlike me as I was always very involved with professional and volunteer activities and had a very full schedule including parenting my young son with my spouse. After a lingering cold evolved into bronchitis, I began to explore what was wrong with the assistance of my primary care provider (PCP). I had mild persistent anemia, but nothing to warrant the degree of extreme fatigue that I was experiencing. She (my PCP) was very tolerant of my various Google-induced ideas, graciously accepting some to follow up with tests and others to set aside.

After eleven months, a test showed that I had elevated M-proteins and my PCP sent me to a hematologist/oncologist who after greeting me reviewed several years’ worth of labs and then turned to tell me to come back in six months. She did not examine me. She did not ask me about my symptoms. She prepared to usher exit the room. I felt that I could not leave her office without her understanding how significantly the fatigue was impacting my daily life. This is when the inner warrior in me said NO! I did not move from my chair. I told her, “Nope. Now is the time that I need to tell you about my symptoms.” (Now this was somewhat uncomfortable for me because I have been well-trained to be polite and professional with doctors, but I had had enough. My New York elbows were coming out!)

I read from a list that I had prepared detailing what I had been able to do prior to feeling unwell and what I could do now. As I went down the list for several minutes, she looked at her watch in a disgruntled manner, finally asking me “What do you want?” I told her that I wanted to feel well. I did not feel well and believed that something was wrong. I wanted her to do more tests. She agreed and also sent me out to schedule an appointment in six months. One week later at 8 AM as I was on my way out to work, SHE called me to tell me that she had scheduled a bone marrow biopsy (BMB) for the next day. I cleared my calendar. The BMB results confirmed that I had stage 2 Myeloma with more than 80 percent involvement in my bone marrow. My husband and I learned of this on the day before Thanksgiving. We were both in shock. We had so much to learn and at that point had no idea how much this diagnosis was going to change our lives.

After a quick success of additional tests scheduled STAT, I started chemotherapy within two weeks. Getting a diagnosis took A LOT of persistence and determination when specialists minimized what I knew about my body — that something significant was wrong. And it was. Today is five years to the day of that diagnosis and I still wonder whether I would be diagnosed today if I had not INSISTED upon further testing. To her credit, the oncologist/hematologist did eventually acknowledge that I was right to press her to do more tests and that it was through my self-advocacy that I achieved a diagnosis.

What I would hope that others would take away from this story is how essential it is to be aware of your own body and to keep advocating (again and again) for yourself with doctors even when your symptoms are minimized. I was trained to advocate for others as a social worker, but it took intentional work to give myself permission to say no to doctors at first politely and then later not so politely to demand additional testing until an outcome was achieved that explained my health issues. Be persistent. You know more about your symptoms than anyone else. Do not stop until you find out what is going on with your body.

Honora Miller

Honora Miller is a Myeloma patient, diagnosed at age 49 in 2015. She is currently in remission with ongoing monthly maintenance chemotherapy after receiving several lines of treatment including a stem cell transplant. A trained social worker and mediator, she is now on disability and in the process of adapting to a “new normal” that does not enable her to continue to work professionally. Honora holds a Masters of Social Service Degree and a Masters in Law and Social Policy from the Bryn Mawr College Graduate School of Social Work. She focuses on intentional efforts to be as healthy as she can be, both physically and emotionally, while enjoying quality time with her family. Maintaining a positive outlook, continually educating herself about Myeloma, and learning how to be an effective self-advocate, have been crucial to managing what has been a life-changing diagnosis.

The Power of a Gift

September 22, 2020/in Patient Stories, PEN Blog /by Sonia Su

It sounds silly to think about stuffed animals—as a then-24-year-old—or anything really giving much comfort as chemotherapy drugs flowed through my veins, but as I have come to realize over two relapses is that the gesture matters. It is as simple as that.

Whether it was my first time receiving chemotherapy or my first relapse, it gave me hope knowing that people, even strangers, cared about my well-being. By the third time around, I was barely hanging on. Chemotherapy and radiation had drained me. I had showed up to the hospital looking and feeling like death.

My “Birth” Day

I call it my absolute worst and best day: Day 0, when I received my CAR T-cells in March 2019. It was the worst, because the two prior days of pre-conditioning chemotherapy had left me in a terrible state. Getting out of bed that morning, I had zero appetite, zero energy, and zero hope. I remember feeling so mentally and physically exhausted that I could barely stay standing while checking in for admission.

Upon being admitted, however, I noticed a stuffed green grocery bag tied at the handles. A nurse had placed the bag in my room, but rather than it be a part of an official hospital welcome, it instead came from a former patient. Soon, I was preoccupied with uncovering all the thoughtful gifts left by this stranger, while reading the hopeful note about how she had been in my shoes one year prior and was well again. What an inspiration this became!

I felt myself starting to regain strength. Then when the mutant T-cells, which had been re-engineered in a lab in California to attack my cancer cells, were being infused back into me, it was literally giving me a new life. On the outside, it was entirely uneventful—think of a typical blood infusion or draw. There was also a medical student who stayed to observe and chat with me through it, and it was that distraction with the sweet care package that allowed me to see that life would keep going. I would keep going.

Paying the Kindness Forward

Such an experience is what motivated me to start my own nonprofit and pay forward the kindness that I had received. (The next hardest moment was on my birthday a few days later, when the side effects of those T-cells landed me in the ICU for two days. What a way to celebrate, huh?)

In fact, completing graduate school during a global pandemic, while founding a nonprofit that helps others affected by cancer have become my greatest accomplishments since my diagnosis. Kits to Heart distributes thoughtfully designed, curated cancer care kits at hospitals and cancer centers in the Baltimore/Washington Metro Area community, as well as ships directly to patients nationwide. I have used my experiences and interactions with patients and social workers to pack the kits with informational resources and comforting products compatible with various cancer treatments. Just like receiving a care package from a survivor gave me hope and inspiration to pay it forward, we can inspire hope at the most difficult moments of treatments.

After Treatments

After undergoing more than anyone should ever have to, life is undoubtedly different. I go on more walks and hikes, for example. I have always enjoyed walking and taking in my surroundings, especially while abroad—but being on the verge of death multiple times tends to change your perspective on simple things like being able to take a leisurely stroll.

I also find joy by giving joy, especially to others affected by cancer. The very act of giving kindness reminds me that I am alive and reinforces the immense gratitude I have. From the scientists who believed in our own immune systems and pursued the research that resulted in CAR T-cell therapy today, to my resilient caregivers, I am thankful.

Yet, not everyone is fortunate enough to have strong support systems, let alone a ride to and from their cancer treatments. It is why I strongly advocate for giving joy in any way that you can when a loved one is diagnosed. Cancer is a lonely enough journey, full of anxiety and uncertainty. It hurts when friends or relatives stay silent during such a tough period. But I get it—given the circumstances, some simply have no idea how to help, while hospitals are not able to address all physical and psychosocial needs of patients with cancer.

These are persistent problems related to cancer care, but as long as I am able to, I hope that my story and efforts are able to provide hope and inspiration to those who need it. Especially during these times, a gift and the message it brings—that you are loved—mean so much. And for me, cancer has certainly taught me how to love and be loved.

Recommended Reading

Charles Graeber’s The Breakthrough: Immunotherapy and the Race to Cure Cancer

Sonia Su

Sonia Su is the founder of the nonprofit Kits to Heart. She was diagnosed with an aggressive type of non-Hodgkin’s lymphoma in January 2018. Her last treatment was CAR T-cell immunotherapy in March 2019 and she remains in remission. Sonia holds a Master’s degree in Asian Studies from Georgetown University and a Bachelor of Science in Journalism from Boston University.

kitstoheart.org

Tag Archive for: cancer patient

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What are the current vaccines? What age groups are eligible to receive them?

How many doses of each vaccine are given and how far apart?

If I am currently undergoing treatment, can I get the vaccine?

If I am not currently undergoing treatment and still have cancer, can I get the vaccine?

If I no longer have cancer, should I get the vaccine?

Does it depend on when I get the vaccine based on what type of cancer I have/had?

Should my caregiver and/or people whom I live with also receive the vaccine?

If I have previously had COVID-19 (tested positive), can I get the vaccine?

Am I fully protected after receiving the vaccine?

What are common side effects of the vaccine and how long do they last?

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Cancer-Specific Resources:

Related Resources:

Transcript:

Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

(Jan 2020)

Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

(Jan 2020)

Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

(Dec 2020)

Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

(Dec 2020)

My “Birth” Day

Paying the Kindness Forward

After Treatments

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