Tag Archive for: cancer

Diary From a Female Myeloma Patient

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Female – 53 years old

Diagnosed July 2014

My thoughts on Myeloma – June 2015

It started with an unexplainable pain in my back that spread to my chest – to my surprise I was diagnosed with multiple myeloma a short time later.  I don’t have the symptoms I’ve read about and I am thankful for this and any delay in what might come.  So, now I’m in a club I never thought I’d join – the cancer club. I do find comfort n connecting with those in a similar situation and I have learned from each of you.  It’s the simplified meaning of our cancer that is expressed through personal experiences that brings me clarity and peace.  I’ve been stable and we’re holding off on treatment for now.  It’s a look into the future with the promise of new and upcoming treatments so we wait.  As a cancer patient I worry often about every ache and pain. Does it mean my body is failing me…is the cancer traveling somewhere new?  Paranoia is much like cancer…they travel hand in hand tormenting the patient and their families. Lately I’ve been able to free my mind of what the future holds. I long for total freedom from the one thing I hate more than anything….I despise you cancer!  Today I will not think about you! You don’t deserve my thoughts. I challenge anyone reading this to do the same. There will be good days and bad days but any day we have to share our experience is a great day!

Cancer Prognosis: A Numbers Game?

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I am living past my expiration date!

Cancer, it would appear, is a numbers game. From the minute each of us receive a diagnosis, we are assaulted with numbers: blood counts, enzymes, proteins, ratios, antigens, mutations and on and on. The numbers can be bewildering and many of us often struggle to wrap our minds around what all of the numbers mean. Quite often, the most daunting number that we encounter is the one related to the median survival from diagnosis. This is the number that I affectionately call the “expiration date.”

We are all familiar with expiration dates because we see so many of them plastered on consumer goods. They are guides to when products are best sold by or consumed by and most of us pay them at least a bit of heed. C’mon… When presented with two cartons of milk, you know that you are going to pick the one with the extra day or two of shelf life, right? But what about the stuff that is already in your fridge? It may be a day or two past its expiration date, but it looks and smells good. And so you drink it because it’s just fine, right? Those expiration dates on the vitamins? Just a guide. Expiration dates on medicine? Most of what is known about drug expiration dates comes from a study conducted by the US Food and Drug Administration at the request of the military. With a large and expensive stockpile of drugs, the military faced tossing out and replacing its drugs every few years. What they found from the study is 90% of more than 100 drugs, both prescription and over-the-counter, were perfectly good to use even 15 years after the expiration date. Turns out, these numbers are not quite the final arbiters of quality that we expect. So what about the expiration dates that cancer patients encounter on their own lives?

Our expiration dates are averages based upon data in the past up to a certain point. They represent a probability of likely average outcome based upon what the medical community knew, factually, up until the point in time represented by the actual data. The expiration dates do not take into account the day by day advances in cancer research and treatment. Further, they do not take into account the individual responses to treatment. Let’s face it: some of us don’t live in the middle of the bell curve from which averages are derived. In all candor, those expiration dates will likely have absolutely nothing to do with your own particular, individual situation. I know that they do not apply to me because I am now, officially past my expiration date.

I was that Type A guy who scoured the Internet in search of data, research and numbers when I got my diagnosis. I was horrified to learn that I was not expected to live to see my grandchildren be born or see my home getting paid off. The numbers were ugly and mean and knocked me off of my game. And they were also wrong. It took me a long time to understand that many of the numbers we deal with only look toward the past because they cannot know the future. And even though my marvelous cancer specialist went to great lengths to tell me to ignore the numbers, to know that I was very likely not going to die from this because we are learning so much, so fast… I stared at the expiration date. Now I am past that date and I am liberated.

In a few weeks I will be back at the hospital for my annual work up. I’m a little grayer. I’m beginning to embrace my inner curmudgeon and I am becoming somewhat set in my ways (the cats must get their treats while I am sitting in my chair at 5:00pm while turning on the local evening news). But I am also past my expiration date. The numbers were wrong. And I get to smile. A lot. In a few short months I will pay off that mortgage. And I know that I will get to welcome my grandchildren into this wonderful world. Even though neither of my daughters are married. Yet!

Targeted Therapies: What does it all mean?

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When my kids were little, I loved reading to them Arnold Lobel’s Frog and Toad books including “The Corner” in Frog and Toad All Year. In it, Frog assures Toad on a cold, rainy day that spring is just around the corner. Frog says that when he was younger, on a similar cold, rainy day, he searched for spring around many corners until he eventually found it-sunshine and flowers-around the corner of his house.

And so it is with us cancer patients, constantly peering around every corner for the still elusive cure. Researchers at ASCO 2015 offered the most encouraging, hopeful news yet that we won’t have to look around the corner much longer.

Or will we?

Cancer is a tricky disease, in fact many tricky diseases, constantly morphing and exploiting loopholes to outwit us. The buzzwords at this year’s annual meeting in Chicago included “immunotherapy,” combination therapy and “biomarkers.” Immunotherapy has become the fourth arm to battle cancer, after surgery, chemotherapy and radiation. On the upside, scientists are making great strides to develop ways for the body’s immune system to fight the cancer. These are called checkpoint inhibitors. Inhibitors basically release the brakes in cells to allow our immune systems to charge and attack the bad guys, e.g. cancer cells. And since the cancer is being attacked at a molecular level, this should work for everyone. But it doesn’t. And that has proved vexing to researchers. Every specialist with whom PEN spoke at ASCO – from melanoma to lung and prostate cancer to colorectal disease – acknowledges that they don’t yet know why the inhibitors aren’t working for all of us.

That’s where the biomarkers come in. Researchers are working to identify specific markers on an individual’s cell to determine if a specific anti-PD1 or

PD-L1 inhibitor will work on a patient. Or why it won’t work.

For my cancer Chronic Lymphocytic Leukemia, CLL, combination therapy made headline news at ASCO. Through clinical trials, scientists have found that combining a checkpoint inhibitor, Ibrutinib, with a standard chemotherapy called bendamustine along with the monoclonal antibody Rituxan yielded an 80% response rate. That’s a “wow,” but it still isn’t 100%. What is it about the 20% that their bodies resisted the combo therapy?

Maybe the key to unlock the mystery lies with genetics. On the last day of the conference, ASCO announced a joint effort with the NCI, National Cancer Institute, to conduct basket trials. These trials group patients together with specific genetic mutations in a patient’s tumor rather than the location of the tumor. So a prostate cancer patient may achieve complete remission or, dare we say, cure by being treated with a drug developed for breast cancer because of the same genetic mutation found in both.

Will that be the magic bullet that cures cancer? I am optimistic that the answer is just around the corner.

AACR Annual Meeting

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AACR Annual Meeting

The AACR Annual Meeting 2015 will highlight the latest, most exciting discoveries in every area of cancer research and will provide a unique opportunity for investigators from all over the world to meet, interact, and share their insights.

This year’s meeting theme – “Bringing Cancer Discoveries to Patients” – underscores the vital and inextricable link between discovery and treatment, and it reinforces the fact that research underpins all the progress we are making in the field toward cancer cures. For everyone – presenters, early-career and established researchers, clinicians, and advocates – the Annual Meeting is a must-attend event.

Better Patient Access to HealthCare: Round Table Discussion Takeaway

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I represented the Patient Empowerment Network at Patient Access Network (PAN)’s 10th birthday bash in Washington, DC On October 22nd. Not the cake and candles kind, but rather, a full day Roundtable to talk about…what else…health care. PAN’s goal to collect and collate information on how four key groups – (1) patients, (2) health care providers, (3) drug companies and (4) specialty pharmacies* might partner better with each other to improve medical care and make it more affordable.

As you might expect with more than 80 participants, there were no clear-cut solutions.

In the last 10 years, PAN has provided a financial safety net for 300-thousand patients grappling with life-threatening or chronic diseases. PAN has paid out nearly three-quarters of a billion dollars to help those patients pay medical bills. And while it will continue that part of the mission, it recognizes that the medical landscape is changing. Treatments are more targeted and expensive, more people are getting health insurance, either through Obamacare or Medicaid expansion. But experts acknowledge most recipients, including me, don’t read part or all of their policies.

My table, among a dozen at the forum, reflected a microcosm of the four key groups. It included representatives three non-profits, an Oncology specialty pharmacy, one drug company and of course, PEN. After considerable debate, we concluded that a change in the Standard of Care for patients is needed. What does that mean? That health care providers – doctors, nurses, social workers, psychologists need to do a better job to communicate with patients, both at the beginning of treatment and the end of life. Johns Hopkins in Baltimore for example asks every new cancer patient these four questions, the answers of which can drive the type and timing of a patient’s treatment:

  • What are you hoping for?
  • What’s important to you?
  • What do you worry about?
  • What brings you joy?

Conversely, patients need to take responsibility for their care and ask questions! What are the options for treatment? How long? What does it cost? Side Affects? Ask, ask, ask. Push, push, push for information. It’s a patient’s right, a right many patients don’t exercise. A right many patients, especially older ones, don’t care to exercise. A reminder of the old saw, “You can lead a horse to water, but you can’t make it drink.”

Another barrier to strengthening these partnerships: TMI – too much information – thanks in large part to social media. And, not all Patient Advocacy groups play nicely together in the sand box. Often there is duplication of services, competing interests and competition for dollars.

As for those start-of-treatment or end-of-life conversations, who’s going to pay for that? Insurance? The patient? The doctor? PAN? Which led me to conclude that a key ‘partner’ was missing from Tuesday’s Roundtable. The insurance industry.

PAN had made a conscious decision not to invite insurance companies, whose premiums are the subject of much debate and angst, not only among patients but also Congress. Roundtable speakers and participants agreed that today’s health care policies are driven by economics, not health needs. From my perspective, the conversation was incomplete without insurance reps. Many may view insurance as the enemy, but they are a KEY, maybe THE key player in this debate and need to be part of this discussion.

Financial toxicity became the catch phrase of the day.  Recently on “60 Minutes, MD Anderson Leukemia Chair Dr. Hagop Kantarjian said “high (drug) costs are harming patients.” However, a rep from Pharma, the high-powered drug company association asked, “What costs more?” The $100-thousand/year Hepatitis C drug, which can cure a patient, or monthly care in perpetuity without that medicine?

In other words, the value versus cost argument.

The Roundtable was a yeoman’s effort by PAN to collect in a diverse mix of advocates for patients, health care providers and the pharma industry to try to make things better. Under one roof. For an entire day. Each of the dozen tables offered ideas on barriers and potential solutions to health care’s thorniest issues. And while there are yet no definitive answers, PAN’s 10th birthday forum represented an admirable start to address improved patient access to and affordability of good health care.

(Carol Preston is a Washington DC-based communications consultant and eight-year CLL survivor)

*(Specialty pharmacies dispense high-end medicines for patients suffering life-threatening or chronic diseases like cancer, diabetes and Hepatitus C)

9 Ways to Propagate Patient Power

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A success story is about having a positive outcome. We mostly hear about success stories as monetary achievements, but that’s really selling the word “success” short. I’m a brain cancer survivor. That’s a success story! I was barely out of my 20s when I was first diagnosed with what was first believed to be a benign brain tumor. My oldest daughter was only a year old then. She just turned 25. She’s only four years younger than when I was first diagnosed.

Where did the time go? I think to myself, “life is half spent before we know it.” There’s a saying that experience is the best teacher, but the tuition is high. Oh, so true! Through my treatments and surgeries I’ve lost the hearing in my left ear; the ability to swallow on one side; certain vision abilities; my tongue is paralyzed on one side (amazingly, the other side works to the point that you mostly can’t tell about the paralyzed side); I also have some memory loss. But I’m still here.

While of course I wouldn’t have chosen these circumstances — they happened to me and because of them I’ve gleaned a great deal of knowledge in a few particularly important areas: doctors, the business of medicine and being a patient. It’s because of my medical history that I have met or been treated by so many doctors. Some of those doctors have at times actually slowed down my path to better health or recovery — but I have learned from those experiences. I also know that there have been doctors without whom I wouldn’t be here today.

The enlightenment that I have achieved is important to share with those that may be at the beginning of their own healing path or one day will be walking it. They pertain to any healing path. Here are nine of the most important things I’ve learned.

If you know something is wrong, something is most likely wrong 
There had been years in between my being diagnosed wrong, and being diagnosed right — I had many symptoms. My particular cancerous brain tumor was relatively slow growing; the yearly MRIs indicated that “it may be larger due to angle or technology.” Instead of this being an alarm bell, or at the very least an indication for further testing, my doctors were lulled into a state of complacency.

I was seen often, looked quite healthy, and so I was probably just overreacting. I wasn’t. The tumor that looked slightly larger every year, was slightly larger. By the time I found a doctor that listened to me, and didn’t just look at me… the tumor had grown to twice the size than it was when it was originally diagnosed and treated. None of my previous doctors had compared my most recent MRIs with my original MRI to see it had grown. Listen to yourself, and campaign heartily.

Freedom to Feel
After you’ve received your diagnosis, you need to have the freedom to feel what you feel. You may have friends and family members that will put different spins on your things. There are those that are full of “gloom and doom.” Then there are others that will tell you not to be depressed when you’re depressed. They will tell you to be appreciative instead for all you do have. The intentions of these upbeat souls, is in the right place, but it will be difficult not to feel depressed some of the time. It’s okay to feel down about being sick, it doesn’t mean you can’t feel positive about your outcome, nor does it mean you can’t feel appreciative about what you have. Just knowing that is part of Patient Power.

Doctors are just people 
We put doctors on a pedestal. We believe them to have our best interest in mind, and I’m sure most do. However, doctoring is also a business. Doctors either consciously or unconsciously make decisions based on their ego, their desire to be noticed in the medical field, maybe even based on multiple reasons. This may sound callous, but think about it. Haven’t we all made a business decision here and there based on multiple reasons? They do what they have to do-you do what you have to do. Again being aware that this may be a part of the landscape is part of having power as a patient. Don’t be flattered that a doctor is interested in taking you on as a patient just because he’s considered an excellent doctor. Think about why the doctor will be good for you.

Doctors will seldom say “I don’t know” 
How much easier the process would be if doctors that don’t know, just said it. You could then take this non-information and move on, but instead a “not knowing doctor” can really slow down the process. You end up wasting valuable time on an opinion that should not even be in the mix. This makes the process more difficult, but being aware that it does exist, keeps you aware and on your toes, and a better patient. Try asking your doctor “Do you know if this will work?” “How will it work?” More information is better. If the answer is not what you want to hear, that’s okay. It’s an answer. You won’t be going to that doctor.

Use the Internet
This may seem obvious, but there are still those that don’t have access to the internet, don’t know how to use it, or perhaps are feeling too overwhelmed after receiving a bad medical report to go searching on the internet for themselves. If you don’t have or know how to access the internet, find someone else that does. There have been stories written about how people self-diagnose online. We’ve all read these stories and it’s important to understand the difference between finding out information after you’ve already received a medical diagnosis and trying to hunt down information to diagnose yourself before you’ve even been to a doctor about what is ailing you. That difference is enormous.

The Internet is invaluable. When I had my first surgery in 1990, there was no real Internet. What did exist was extremely slow, and had very limited information. These days, if you dig, you can find out so much, not only about your illness, but about your doctor’s background, and what other treatments and research is available as well. There are services that allow patients to comment, even rate doctors with whom they’ve consulted. This is good information. Information is part of Patient Power.

The more information the better 
I like doctor rating sites. These services keep doctors on their toes. If a doctor asks you to sign a legal document agreeing that you will not participate in one of these sites (I’ve heard that this is something that some doctors are doing now), walk away. If a doctor is that worried about you going online and making a negative comment about them, then this is not the doctor for you. Most doctors aren’t concerned about these sites because they know they’re doing a good job.

No doctor should make you feel your questions are a waste of time
No doctor should make you feel your questions are stupid, or that you’re stupid. Again, not all doctors know all things. Sometimes condescension is “I don’t know” expressed differently.

Opinions, opinions, opinions
It’s said you can take opinions all day long. You can… and you should. The more complicated the medical issue, the more opinions you should get. Try and get as many as your insurance will pay for, or you can afford. Yes, It can get to be overwhelming to get/have many opinions; it’s definitely easier to get only one — but what price easy? The one opinion you have may be a wrong opinion. It is so worth taking the time and doing the research. The best solution for you will become clear. I know from experience that this is true.

Always trust your gut
I asked one of my doctors about a certain therapy, and he emphatically told me that the therapy was not for me. Turns out he was wrong. That therapy is what may have saved my life. When he told me it was not for me, it didn’t sit right. I trusted my gut and pursued it anyway. Over my years as a patient, I have had a doctor strangely come to my bedside and cry. I had another who only returned my calls at 11:30 at night. Another told me we would be seeing each for the rest of my life, only to then have a follow up conversation several days later where he wished me luck, but that I should be seeing another doctor for follow-up.

All these things at the time seemed strange, but looking back now with hindsight, I know that all of these responses might have been indications of either things that were not right in their own lives, or in the most glaring cases, failing on the part of that doctor. So listen to your gut. If it doesn’t feel right, it probably isn’t.

(This post was originally published in Huffington Post)

 

Brain Cancer Survivor Helps Others Through Life Crises

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Heidi Gottlieb is a brain cancer survivor who uses her experience as a patient and cancer survivor to guide others through their own life crises.

Twenty-five years ago, Gottlieb was diagnosed with a brain tumor. Her experience with being diagnosed at a young age (29 years old) at a time when there was no internet and limited treatment options for brain cancer taught her perseverance and the importance of patient empowerment.

After being misdiagnosed, enduring two grueling brain surgeries, undergoing two bouts of radiation treatment and a long re-education period where she had to relearn certain life functions such as how to swallow, Gottlieb made a commitment to teach others how to help empower themselves and march forward rather than give up.

One of the first events Heidi Gottlieb undertook as a cancer survivor and advocate for patient empowerment was to create a

250-mile fundraising walk from New York to Boston. As she walked, she spoke at schools and organizations along the way about her experience and her thoughts and feelings about cancer survivorship.

That walk taught Gottlieb that she wanted to dedicate her life to helping others through their life crises. She enrolled in classes and recently earned her certificate through the International Coaching Federation  as a Professional Coach.

In her role as a Transformation Coach, Gottlieb teaches people (20% are cancer patients) how to overcome personal crises, energize themselves, reach their full potential and move toward a more productive, happier life.

“There is a lot written about empowering the patient, which is good. But the people that I want to reach are the survivors. Those who want to lead a so-called normal life, have a job and have a personal life. These people are sometimes “lost”. They are thinking about getting new jobs and wondering if they should tell their potential employer that they have cancer. I would like to help them”.

I asked Gottlieb if she considered herself an empowered patient. She replied,

“Yes, I am an empowered patient. I have been a student of my illness for 25 years and if you have been a student of anything for 25 years, you live and breathe it. I have been immersed in the medical field since I became ill because I wanted to know everything I could about my condition. It was difficult. There was no internet. Since I was not a medical student, there was no way to research about my brain cancer. I was bounced around from one doctor to another. I underwent surgery and radiation without knowing much about what I was doing.

 After my experience, I really wanted to dedicate my time to finding out more about brain surgery, brain cancer, and cancer survivorship in general.”

I asked Gottlieb what advice she could give other cancer survivors. She explained her philosophy as follows:

 “I know that the fact that I have been through so much and am still here is highly unusual. Not many brain cancer patients are survivors. My cancer could come back at any time. I have come to a place where I try very hard to live in the now. You never know what will happen. Through my experience, I have been given the gift of understanding that I must enjoy every moment.”

 Heidi Gottlieb has her own website where you can learn more about what she does as a Transformational Coach. She blogs often about her feelings on being a cancer survivor and an empowered patient. I have posted one of her latest blogs; read it here.

Bribing Anxiety

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So, the last time that I had my regular appointment was a year ago. I was more than a year past treatment and my blood work came back good, my energy level was good and I had no issues to report. I was told that my complete remission was still in place and that the next appointment would be in six months. As it happens, the treatment that I received in clinical trial for my “moderately severe” matrix of genetic type of chronic lymphocytic leukemia (CLL), mutation status and symptom presentation worked out pretty much perfectly. Time to negotiate. “Let’s make it a year?” I implored. They set the appointment for six months but assured me that they would get together and consider the proposed new plan that I put on the table. A few weeks later I noticed, while checking my records on the online portal, that my next appointment had, indeed, been moved out to a year. And now I have that appointment coming up in a week or so.

I have embraced my remission and attacked life. I’ve been doing more over the past year and am just plain getting after it. I hardly ever say no to an opportunity, I smile a lot, I travel, I explore… And now I’m filled with anxiety. I want to take a nap. Does the fatigue mean that remission is over? I had a strange, very mild rash on my hands that really didn’t itch, but lasted a few weeks. Does that mean that there’s some bizarre infection in my body? My joints have been achy. I’ve had some pretty amazing headaches. Does that mean I have to start adding the term “relapsed” to my cancer vocabulary? Or am I just being a normal human being reacting to the unknown?

I know that I am reacting normally to the stress of cancer and that my responses are pretty much how all of us, at least quietly, deal with all the little things. We are told to take an inventory of everything and always report changes to our health care providers. We do this because some changes can be the early warning trip wire that our cancer has decided to change the rules. So we (and by we I mean I!) will always wonder if the next item up on the “how do you feel” menu is a harbinger of cancer or just the soreness that a 50+ year old guy feels after shooting the rapids in an inner tube for 5 hours. Anxiety and stress is something that gets added to the lives of every single person that is touched by cancer, patients and caregivers. We really cannot banish it from our lives, but we can rein it in.

A week of worry is not going to change the results of the upcoming hospital assessment. I’m either still in remission or not. So I will try to occupy my time and be productive. I’ll cook some fabulous meals for my family, give a presentation to a local civic group, mow the grass, write some articles, research a project… And try to minimize the amount of time I allow the anxiety to actually interfere with my life. I know that I cannot banish it, so I will try to paint it into a corner. Oh, and I’m bringing my doctor a bottle of wine. I’m told he likes wine and maybe a “bribe” will keep me on the one year check up cycle? Don’t give away my secret plan!

Living Well With Myeloproliferative Neoplasms (MPNs)

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Understanding the Conditions, Treatments, Research and That You Are Not Alone

A FREE live event at the Hughes Auditorium at Robert H Lurie Medical Research Center

A new understanding of Myeloproliferative Neoplasms (MPNs) is being shaped by developing research in the field. Experts are optimistic about new treatment options that are shaping up to improve and potentially extend the lives of MPN patients. On Saturday, June 7th in Chicago, IL, Patient Power and its partner, the Robert H Lurie Comprehensive Cancer Center of Northwestern University will conduct an in-person forum where you will hear the latest in MPN treatment and research from world-renowned experts.

  • The latest news surrounding MPN research and treatment and what it means for you or a loved one
  • Inspiring stories of people living well with MPNs
  • Strategies for managing side effects and day-to-day coping skills
  • Tips for effective communication with your health care team and family members
  • Q&A: Get answers to your questions

European Hematology Association Meeting

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After 12 years EHA’s congress is returning to Italy. Milan is one of Italy’s most fashionable cities and holds several historic and artistic attractions, and a congress center with excellent facilities and a great location.

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