From Diagnosis to Transplant in Four Months

Cheryl Bonder is the New Jersey Support Group Coordinator

I was diagnosed with a rare unclassified MPN in May of 2013. Prior to my diagnosis I was being treated for what was believed to be Urticarial Vasculitis by the head of Dermatology at NYU. This is just a big name for inflamed hives. I had extensive blood work evaluated every three months and 8 biopsies over the course of 12 years. I was diligent with opinions from several leading academic medical centers in New York City and Baltimore. My reports were always within normal range. Aside from the discomfort of these hives that were itchy and painful I was feeling well. I was put on many anti-inflammatory medications and allergy medications to no avail in arresting the hives. It was unanimously concluded that I developed an auto-immune response from the antibiotic Levaquin.

Although I was asymptomatic in May of 2013, my blood tests revealed something more was going on and I was referred to a local Hematologist who told me that I had Leukemia. The world fell out from under me and I feverishly began a search for a Hematologist at a New York Academic Medical Center. I met with several specialists from different hospitals and decided on New York Presbyterian/Weill Cornell Medical Center.

A Hematology Pathologist report stated that the Levaquin had most probably caused the migration of the cells that led to my mutation. The report also stated that I didn’t have Urticarial Vasculitis, but Sweets Syndrome which is a rare auto immune skin disorder also stemming from the Levaquin. In June I met with the Director of Hematology and Leukemia Department and the Director of the Stem Cell Transplant Department. My case was certainly unusual, but nevertheless, my only chance for a cure was to undergo an Allogenic Stem Cell Transplant. Very quickly, donor matches were sought after. I did not have a familial match but fortunately several perfect matches were found from unrelated donors. On August 9th 2013 I was checked in to the hospital for my transplant.

I was fortunate that I engrafted well and moved along this journey with few complications. I was in the hospital for 2.5 weeks and then moved in a nearby housing facility so that I could be monitored daily at the hospital. I was able to return home after just one week of being in this facility. Aside from the emotional toll of all that was going on for my family and me, the physical impact of the low intensity chemo drugs and additional drugs that followed to protect my lungs, my liver, and to ward off any possible GVHD, my body was very weak. I had experienced a physical fatigue like I had never known. Taking a few steps caused major exhaustion. I felt like there were 50 pound weights on each of my legs. I came home with needing 31 pills a day. I needed to visit my medical team every week for one year. With the amazing support from my daughters and my friends and family, I pushed through every day. Many weeks passed until I began to feel a little stronger. I can’t stress enough that this is probably the most difficult journey you will endure. Be aware of all the ramifications of a transplant and the possible outcomes before you decide if this is right for you. Initially I was 100% my donor. Unfortunately, as months passed less and less of my donor’s cell remained in my periphery blood. I had relapsed.

I see my medical team every month now and feel grateful that my disease, although present is being managed. I live a full life able to do most of what I choose.

My background has been in medical education and Program Development. I decided during my recovery that I must use this experience to assist other families and patients that will need to face this process and a cancer journey.   I became multi- certified as a cancer/life coach working with families and transplant patients. I am also an MPN Support Group Facilitator in Northern/ Central New Jersey.

One piece of advice I would offer is to become as educated as possible about your challenges just enough to seek out the right medical team at an academic medical center that can assist in proper care. I would also suggest to try to resist the temptation to constantly google your disease. You can’t believe all that you read. You are seeking the advice from a specialist and letting go of your fears to trust is very hard but it will serve you well to do so. Seeking many opinions after treatment or ongoing treatment can be very frustrating when you receive many different thoughts on treatment options. My advice is to trust your judgement as much as possible and in the hope that your medical team you have chosen will do all that they can for you. If you feel that your doctor is against second opinions or discussing your case with other doctors, well then it’s time to seek out another medical team. You will be with these doctors for a very long time. You must feel comfortable and trusting in their thoughts. The ability to have healthy, good communication with your team is very important.

There is no denying the emotional toll this will take on your ability to move forward with your life. With the right assistance you can reclaim the joys you have known. I am living proof that life goes on. It may be different, but life goes on. Learning how to navigate the ever-changing landscapes of this disease will be challenging if you attempt to do it on your own. The right coach will assist in the design of the new road map.

Cheryl Corin-Bonder is a Certified Health & Wellness Coach specializing coaching cancer survivors, survivors of chronic disease, stem cell transplant recovery & survivorship, cancer care specialists, weight management, and life transition challenges. Learn more

Blog: Living in Paradox

November: You Are Not Alone

By Marina Sampanes Peed

When people with a MPN gather, it is easy to forget that these blood cancers are rare. MPN advocates from two dozen countries describe patient experiences that are eerily similar:

  • Correct diagnosis follows one or more years of signs or symptoms.
  • Clinician who made diagnosis did not provide current information about the disease nor treatment options. (Some discount while others magnify the risks.)
  • Delayed in receiving appropriate treatment.
  • Many “Quality of Life” symptoms are not recognized and remain untreated, especially in women.
  • Access to and participation in clinical trials is difficult.
  • Support from the MPN patient community is highly valued.

Most hematologists rarely, if ever, encounter a patient with a MPN. Because the diseases manifest differently, experience with a few patients is not sufficient to develop expertise. If your local physician is not proactive, you may insist he/she confer with a MPN specialist regarding your care. The experts regularly consult with general practitioners and hematologists regarding management of their MPN patients.

If your local physician is not proactive, you may insist he/she confer with a MPN specialist regarding your care. The experts regularly consult with general practitioners and hematologists regarding management of their MPN patients.

The patient experience was a recurring theme in Frankfurt am Main, Germany October 27-29, 2017 when 43 patient advocates from 24 countries gathered with several clinicians at the 2nd MPN Horizons International Conference for MPN Advocates. More reports coming soon.

Here are just a few headlines:

“These diseases will eventually be called by their mutations rather than Essential Thrombocythemia, Polycythemia Vera, and Myelofibrosis.”

~ Martin H. Ellis, MD, Meir Medical Center and Tel Aviv University, Chairman of Israel MPN Working Group

“Patient Reported Outcomes are, in fact, doctor reported outcomes; not actually from the patient. There is work to be done.”

~ Sarunas Narbutus, European Patients Academy on Therapeutic Innovation (EuPATI)

“The aging of hematopoietic stem cells may play a role in the mutations, and the health of the niche where the stem cells reside is also important… There appears to be hierarchy among mutations and competition among them.”

~ Saghi Ghaffari, MD, PhD, Tisch Cancer Institute, Icahn School of Medicine at Mount Sinai

“When someone receives a MPN diagnosis, their cognitive map lights up based on beliefs, knowledge, expectations, psycho-emotional reactions, and personality traits.”

~ Ketti Mazzocco, PhD University of Milan, Department of Oncology and Hemato-oncology; European Institute of Oncology

 

 

Living in Paradox Blog: October 2017

Do Some Things Never Change? It’s On Us!

By Marina Sampanes Peed

While participating in the Women & MPN™ conference in Los Angeles at the end of September, I met several women who were newly-diagnosed with a myeloproliferative neoplasm. They are bright, can-do women who recently learned what is causing their crazy symptoms and cost some of them their employment. As I listened to their stories, a rush of memories ran through me:

Ten years ago, after severe abdominal thromboses, sepsis, and organ failure, a hematologist told me, “At least you don’t have cancer. You should see some of my really sick patients. When you recover from the surgery, you should start working out and lose some weight. You’ll feel better.” Eight years ago, when I almost stroked with a hematocrit of 69.1, another hematologist started treatment (phlebotomies and hydrea) and encouraged me to consult with a MPN expert.   That expert noted some CBC results from several years earlier (separate health care organization) that showed platelet count over 900,000. He explained that I likely started with ET; it wasn’t diagnosed back then because they didn’t know as much and the internist didn’t connect my symptoms to a blood disorder.

Incredibly, in 2017, some hematologists still don’t understand the very diseases they diagnose. I get it; there’s a lot to know. Given the complexities of blood cancers and diseases, they have a responsibility to acknowledge their limitations and refer patients to specialists. Unfortunately, many newly-diagnosed MPN patients receive partial information, treatment plans that look more like Swiss cheese, and faulty expectations.

I naively assumed a decade after my first experience, MPNs would not be foreign to local practice physicians. In the last ten years, significant progress was made with new mutations identified, patient studies, new treatments, and diagnostic and treatment protocols. MPNs receive attention at American Society of Hematology (ASH) and other related conferences. I thought greater awareness and understanding would filter through the hematology network beyond university and research centers. Based on recent conversations with several new patients, this is not happening. And people in smaller communities are at greatest risk.

Fortunately, these women took the information from their physicians and started researching on their own. One way or another, they found MPN Advocacy & Education International’s conference and decided to attend. The physicians who spoke at the conference shared timely information in relatable ways. “I can’t tell you how much relief I feel! Meeting other patients and talking to doctors who know what they are talking about gives me hope,” remarked an attendee.

Another shared, “My doctor told me that PV is no big deal. Then I looked it up and read it is cancer and could kill me. After listening to all the speakers, I’m starting to believe that we can get a handle on this after all. I don’t understand half of what they said, but at least I know it’s complicated and treatable. Now I need to find a good MPN doctor!”

Don’t fight a fact. Deal with it!

So as the MPN progress train lurches forward, we must remember that everyone isn’t on board. Let this be a reminder to take charge of our care. Ask questions. Seek second opinions. Connect with others. Be mindful. Don’t give up.   This caring MPN community is here for you.

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September Blog: Answers to Your Intimacy Questions

Dr. Laura Michaelis, MD

How do I know if I’m having ET symptoms or menopause symptoms, i.e. night sweats, foggy brain etc.?

There is no one answer for this – and many of the symptoms of essential thrombocythemia may be confused with “normal” symptoms of menopause. However, there are some tell-tale signs that ET is the root cause. For example, night sweats are different than hot flashes. Night sweats typically occur while sleeping and characteristically cause soaking sweats – like you have to change your pajamas or the bedding. Night sweats are not subtle. In contrast, most women describe hot flashes as a flush that comes on at any time of the day (or night) and while uncomfortable, doesn’t typically cause profuse sweating. If you are having migraine headaches, visual auras, painful rash of the extremities — called “erythromelalgia,” these are more common with ET and warrant a discussion with your physician.

Sex is difficult since my diagnosis. My husband is cautious and doesn’t want to impose himself on me, and I cannot get my head into it. I’m consumed with thoughts of the disease and possible progression.  Can you offer an insights?

Many individuals, when faced with a life changing diagnosis, find that anxiety and depression about the diagnosis can affect the normal activities of life, whether or not it’s sexual activities or libido, work, sleep or other relationships. It is very, very common for people to experience grief reactions or event depression with diagnosis. Depression and anxiety are very treatable conditions.

In your situation, I would strongly recommend seeking out a psychotherapist or psychiatrist and discussing that your worries about your disease are impeding your normal function. You might also have your husband join you at some of these sessions. Finally, don’t forget to mention this to your hematologist as well, who might be able to give some advice with regard to a medical approach. The most stressful things in life: death, divorce, illness often cause humans to experience grief, which can also take the form of anxiety or depression. There is excellent treatment for this in the form of therapy and medication. Please talk to a professional.

I know intimacy is many things unrelated to sex but sometimes the fatigue overtakes me and I simply don’t care if I ever have sex. I also fall asleep when we try to be close.

Fatigue is a very common symptom of the MPNs, including the “lower-risk” MPNs including polycythemia vera and essential thrombocythemia. This can impede normal sexual activity and libido. One option is to try creative, non-medical, interventions. Think about what times of the day you are at your best. Perhaps timing your intimate encounters to be at a time of day when you feel more energized? Experiment with alterations in your diet – are there some foods that make you sleepy? If so, you can avoid those when you want to remain energized. Certainly, avoiding alcohol might help to prevent fatigue on “date nights.” A lack of libido can also be a sign of depression and certain

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