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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: Aug 26 12:21pm | Replies (395)
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@treeore

Thanks, Lori.

I'd almost rather take my chances with clotting than take chemo for the rest of my life, knowing that it will never solve the problem, just kick it down the road. I think of its side effects on the rest of my body, and resent it. We'll see if I am forced to reconsider.

Right now, I'm trying to figure out how to change doctors at my local clinic. My doctor is kind and concerned but is fearful of all the newer drugs, and never offers to look into them or look into trials, etc. There is a doc at the clinic however who is on one "MPN Specialist" list--a Dr Yasenchek. I don't know how to make the switch, and it will be awkward if I have to face my current doctor and explain that he does not seem to have the training for this rare disorder.

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Replies to "Thanks, Lori. I'd almost rather take my chances with clotting than take chemo for the rest..."
Lori, Volunteer Mentor | @loribmt | May 24, 2023

Well…the first thought that ran through my mind was, “You do know that blood clots can be instantly fatal, right?”
With high hematocrit and high platelets there may come a time when aspirin therapy won’t be enough to stop clots from forming. I’m just playing devil’s advocate here… ☺️
There are worse things than having to take a medication for life, to stay alive.
Believe me, I can appreciate your thoughts about ‘chemo’ meds. For all of my adult life I avoided meds like the plague. Just when I thought I’d be cruising into my golden years having sidestepped any prescriptions old age seems to bring, within 3 weeks I went from being perfectly healthy with no meds at all to a poster child for big pharma. I am living proof that there is indeed ‘better living through chemistry’. Sometimes we need these drugs with the frightening fine print to save our lives, prolong them or just buy time. Just tossing it out there to never say never.

Awkwardness aside, changing doctors is your right. If you’re not entirely comfortable with your current physician, you owe it to yourself to get a second opinion. It’s usually as simple as placing a phone call. If you already have a doctor in mind, that is a great place to start. I found a good discussion you might want to peruse regarding getting a second opinion. I’ve posted the link for you.
https://connect.mayoclinic.org/discussion/second-opinion-8/
I think getting another perspective on your ET will give you peace of mind.
Are you still seeing your acupuncturist? Is this helping with some of your symptoms?
One other thing I wanted to touch on regarding your elevated liver numbers. Were you taking herbal supplements with the Basremi?

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