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PV JAK2 and evolution of treatment over time
Blood Cancers & Disorders | Last Active: Feb 4 9:27pm | Replies (10)Comment receiving replies
@loribmt I trust my providers, local and at UCHealth (a four-hour drive). Just wonder if there is any study of PV being affected by age, environment and patient's overall health. There's a question mark in my mind as to whether I'm doing all to circumvent a stroke or heart attack from this disorder.
Most likely my anxiety is normal for someone diagnosed with a rare disorder and anticipating the fourth quarter in life. Being 75+ has its own concerns beyond PV is suppose. . . .....
Replies to "@loribmt I trust my providers, local and at UCHealth (a four-hour drive). Just wonder if there..."
@bracha At UCIrvine, much research going on regarding JAK2/polycytemia vera at the Fleischmann Lab.
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@bracha, it’s understandable to be concerned with a new diagnosis like PV. And with concern often comes that dreaded anxiety. However, I didn’t realize you’re taking a low dose aspirin. You’d mentioned that you weren’t on any medication for PV. Well, the aspirin is one of the first and easy meds that doctors can prescribe to help reduce the risk of blood clots. Often PV is managed that way for a significant time, especially if routine phlebotomies are successful.
I think you can allow yourself less anxiety now, knowing that you are on a med that reduces the risk of strokes. Keep up with physical activity. So if you’re an idle person, then try for at least a good 5 minute walk in the house (or outside) or doing calf raises for several minutes every hour. Pair those short bursts with some weight lifting, aerobic exercise or brisk longer walks and you’ve reduced your risk. And, of course, staying well hydrated.
Since you’re currently responding well to the phlebotomies and taking nothing other than low dose aspirin, your doctor is feeling comfortable with how this is being handled. Nothing will change abruptly. Most blood diseases are gradual, not overnight. So your doctor will monitor you with routine blood work, watching upward or downward trends and plan your meds accordingly. Maybe you won’t ever need more than aspirin and if you do, there are several effective meds.
In the meantime, I just mentioned this to another member this morning, several hematologists for members in the forum, including my own hematologist has anecdotally shared that, “The majority of people with a myeloproliferative disease such as PV or ET will pass away with the disease, not from it.” So if I may, I encourage you to move past this stage of ‘now what’ and just get on with life. Nothing has changed, you don’t feel differently, except to know you need to monitor your blood through labs and take an aspirin. Most 75+ year olds would love to be in those shoes!
Hah, yes, being 75 + has its own concerns…I just turned 72 last week. I hear you! 😅 I recently hurt my thumb doing something really stupid and now I worry I’ll starve if I can’t open jars. LOL. (Nah, I’m just joking) but it is putting a cramp in my style for sure!