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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