by Zhenya Senyak
This is not a disclaimer: My own, entirely personal and subjective experience as an 18 year veteran patient of the MPN wars — with two purple hearts and several campaign ribbons — has led me to embrace certain heretical views of our MPN world. Sharing these heresies is undertaken in hope of stimulating independent thinking and fruitful discussion, And maybe help support other heretics.
Zhenya’s Book of MPN Heresies
Heresy #1… Maybe Damishek was right. But from the patient’s perspective, MPNs are clearly not a single trilateral disease but multiple diseases with different symptoms, different management requirements often requiring radically different therapies. What we do seem to have in common is an unfortunate willingness to accept conventional diagnosis or treatment options despite disagreement among scientists and clinicians.
Heresy #2…Watch and Wait seems to me always to be the best option for patients. W&W usually means taking no meds and closely monitoring counts and clinical condition. W&W can also mean taking one or more meds and watching closely as we wait for measurable effects. In either case, W&W is a state of awareness, a warning not to fall asleep at the wheel.
Heresy #3… Myelofibrosis is not a disease at all but the effect of one or more disorders. (And until PRE-myelofibrosis can be universally recognized by examination of bone marrow biopsy slides it seems no more useful – or treatable — a diagnosis than traditional MF, transitional MF, proliferative MF, laconic MF, post MF, etc.).
Heresy #4…Take no medicine without a specific projected and measurable outcome. (See Heresy #2.)
Heresy #5… We should not enter a Phase I/II clinical trial – a dosage and toxicity experiment – unless all other options have been exhausted AND there is some convincing proof we will be given a drug that may contribute to our well-being or longevity.
Heresy # 6 – For the patient, there is no such thing as a routine bone marrow biopsy. Never submit to a BMB simply to keep your chart up to date or your hematologist happy. BMB’s should be reserved to explore underlying causes of clinical changes (rapid weight loss or suspicious blood counts, etc.) and even then only if results will help determine treatment options and a simple peripheral blood smear isn’t adequate.
Heresy #7 – Our health and well-being is not the primary endpoint of a clinical study. Entering a clinical study with that in mind is a delusion shared by almost all of us.
Note: Obviously, some of our MPN conditions require aggressive treatment closely monitored by experienced hematologists. Some conditions require self-administered medication. There’s also little doubt, in light of rapidly evolving treatment options, that too many of us are over-medicated, prematurely medicated, or inappropriately medicated. The only way to minimize risk is to learn what we can, share what we learn, and partner with an MPN-experienced, trusted hematologist.
Full Disclosure: I was diagnosed with ET in 1995, with MF in 2009. I take a single 81 mg enteric aspirin and thyroid meds,. Except for severe chronic fatigue, muscle cramps and occasional bone pain – which could simply be geriatric in nature – I feel pretty good. My counts are stable, not wonderful, not bad.
Take me back to the Contents
© Zhenya Senyak and MPNforum.com, 2013. Unauthorized use and/or duplication of this material without express and written permission from Zhenya Senyak and/or MPNforum is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to MPNforum.com with appropriate and specific direction to the original content.