My Oncologist states he is not overly concerned unless my hematocrit gets to 50. Everything I have read indicates mid 40’s is best for someone with PV. Does anyone else have experience with their Hem/Onc’s indicating this level is acceptable. My platelets run around 350-550 with hydrea. Also, what experiences have others had with more natural treatment protocols?
My Hematocrist level is 45 max, if it goes above that number I start to have headache all day long> To: email@example.com> From: firstname.lastname@example.org> Subject: [polycythemia-vera] Hematocrit levels> Date: Tue, 26 Feb 2008 21:20:28 -0500> >
re hemocrit levels: my doc is very lenient in experimenting with the appropriate level for each patient! He has one who feels better at 30! I get phlebotomy done when mine reaches 35—I feel less sluggish and I get less swelling of the ankle and knee areas with a lower hemocrit. THis also means that my hemoglobin level is around 11 (which is “anemic” BUT that is good! lower iron levels, according to doc is better for the heart ). Jeannette
My hemotocrit has been rising steadily for a year or so. It reached 46 three weeks ago and now it seems I have to add therapeutic phlebotomy to meds (anagrelide 2.5 mg and coumadin 5mg). My hemotologist is saying that I need to stay around 42. She says that 46 is about right for men.
I started getting bloody noses at 46, but I had NO IDEA that headaches were part of this. I’ve been blaming them on weather and stress and bad glasses and whatever else I can think of.
How many times a month is “normal” for a phlebotomy? I’ve had 2 in 2 weeks, but I’m hoping that that is just to get to a workable level and that eventually it will slow down. It was one thing to have to explain to my boss the weekly blood draws, its another thing entirely to have to rearrange my life to fit in phlebotomies.