New book for MPN patients a mixed bag

Living Well with an Myeloproliferative Neoplasm by Dr. Krisstina Gowin is a new book--it may be the ONLY book--aimed at helping MPN patients understand and "live well" with our uncommon cancers. Is sells on Kindle for about $10. It's probably a very good resource for people who are just diagnosed. It can help you get your thoughts together and provides some good medical explanations that you probably won't get from your hematologist. But the book has some down sides. Here's my review:

I really liked Gowin's clear and interesting information about the science behind MPNs, at least what is known about them to date. The section on "Understanding MPNs" explains, for example, terms like "allele burden" (the percentage of your cells that contain your ET mutation) and what the "vonWillebrand factor" is (a substance in the blood that makes it clot).  This is often the stuff your hematologist doesn't have time to tell you.

Sections such as "Monitoring Your MPN Disease" and "Wellness in MPN" offer useful suggestions for keeping a diary of your symptoms. This presumes, or course, that your hematologist believes ET actually HAS symptoms. Too many ET patients still hear that "ET is a symptomless blood disorder" from their doctors.

Also in these sections are a list of questions to ask your doctor and some tips for how to communicate with him or her. These, as well as the general dietary suggestions for reducing your overall clot risk, will be helpful.

"Managing MPNs" has good discussions on fatigue, itching, pain, and sleep disorders that plague many ET patients.

Dr. Gowin studied under Dr. Andrew Weil, and she takes a holistic (whole-patient) approach to disease that most of us wish our specialists did. However, like Weil, Gowin pushes complementary treatments that MAY affect symptoms such as fatigue--ginseng, red wine, sugar, fiber, etc.--but which have not been proven to affect symptoms or progression of cancer. (Weil has been in trouble with the FDA for making implicit claims about some dietary regimes in his books.)

The bottom line is that none of these dietary suggestions for symptoms would be harmful for anyone with an MPN. They might even help you feel somewhat better over time. (Cutting back on sugar and starch have helped me.) However, dietary changes to help disease symptoms are not cures, and most of what Gowin offers are not proven treatments, though she makes no claims that they can cure MPNs.

The book is also heavily padded in places with general information about exercise and nutrition that is not specific to cancer patients, or info that you can get from many other sources for free. For example, you can read about foods like the Dirty Dozen and Clean Fifteen at the Environmental Working Group Web site. Or you can read about exercise and cancer at the Harvard Medical School site. And there are lots of sites that will tell you how to get your medical documents in order. However, having all this info in one place may be useful to some readers.

I didn't find helpful the discussions in the "Managing MPNs" section about spiritual care, joy, and gratitude. Gowin claims that, in the general population, "happiness" reduces death risks by 18 percent and among the chronically ill (that is, all ET patients) by 2 percent. Not to bust anyone's balloon, but 2 percent is not statistically significant by scientific standards, and "happiness" is hard to quantify. In talking to lots of ET patients, my guess is that most of us want info about our disease, our treatment, and our long-term prognosis. Spiritual matters are highly personal and vary by individual, culture, and religious or spiritual beliefs. We don't need spiritual direction from our medical team.

Sad to say, perhaps the most unhelpful part of the book is where to find help and information. Gowin seems to be completely out of touch with the realities of ET and MPN patients here. For instance, she urges readers to join a support group for MPN patients. Do you know of any "live" groups for MPN patients? No, neither do I. That's why so many of us turn to online groups, which can be a very mixed bag. They are often unmoderated, may offer unvetted information, or even be infiltrated by alternative medicine practitioners selling unproven or dangerous "cures."

Gowin also suggests finding a cancer navigator, someone who helps coordinate cancer care most often for patients with acute diseases. This may be helpful for MF patients, but most ET patients don't need this kind of intervention.

What ET patients really need, in my opinion, and what the book cannot deliver, are patient-specific answers from hematologists about a disease that has many variables and unknowns. ET has three known mutation drivers. Age at diagnosis and onset, clot history, and other factors affect treatment and monitoring. Patients want to know things like: What is my allele burden? Is there any scarring in the bone marrow? What is my driver mutation? And how will all of this disease progress and my care now and in the future?

ET patients also need information about medications: What medications are available and which are right for you? How should you handle your medication? What are the side effects, short- and long-term? I was not given any information about hydroxyurea by the hematologist or by the oncology pharmacist. When I called about this, I was told that that service was reserved for patients taking heavier doses of chemo. I got my info from Rite Aid.

I do think the landscape of care for ET patients is changing, slowly. Hematologists seem more aware of MPNs, less likely to dismiss symptoms, and more cognizant of different treatments. The fact that this book, however imperfect, exists at all is a good sign.

Be well!

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