Be wary regional "experts." Part 2 (today at 9:00 AM)

[Memo To Me]

Better to read and study and make your own determination of what you infer is your best treatment option, based on evidence available to you, and then go seek the "expert" who ascribes to what is common sense and optimal treatment for you and to you.

These "experts" are all well meaning, they are all rational people, empathetic, very nice people for the most part, true scientists, but they are not inviolate as to expertise in the MPDs, like you and I they are infused with biases and clinical experiences in the large cohort of MPD patients they treat. Their advice is invaluable but don't follow them off the cliff. What if you are enticed into a clinical trial and the drug they need to recruit for doesn't forestall disease progression?

You are then many months or years later with advanced disease. Had you gone on the "right" treatment for you months earlier, you would be in better shape, maybe in remission, and not scrambling to try to halt or reverse things at a later stage of disease. This is what I have learned studying and observing patients and doctors and scientific advancement of the MPDs as a lay person over the last 20 or so years.

There are no shortcuts. The shortcut here becomes the "longcut." If you take the wrong path, you'll never go back to an earlier stage of your disease. Remember, in most cases, you want disease control, not just symptom control. But if you are in late stage of AMM or MF, of course it is a scary time and you are more inclined then not to try anything, especially if it is imparted to you by a white coat as very promising.

Keep everything in perspective.

My opinion.

Robert

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