ET, Polycythemia, Jax2: Is this a blood cancer?

I am truly sorry if my comment causes you distress, I have found much good information in this support group from others who've dealt with symptoms ET and side effects of my current treatment hydroxyurea (Hydrea). The view that ET is not cancer not "unsubstantiated info." It is shared by many hematologists who don't agree with the current classification. Sharing what we are hearing from our doctors is part of what I appreciate and expect from a support group.

The classification of ET is a very small point in the over all scheme of things. I hope you have healthy days, successful treatment, and peace of mind in the new year.

As far as 3 Hemotologist/ oncologists that I have seen, state that it is a rare form of incurable blood cancer but with treatment you can live a long time with it. You need to be under good care.

Agreed. My oncologist/hematologist said Polycythemia Vera IS a blood cancer. You have to stay on top of your labs, take your meds, do phlebotomies when numbers go high and just live a normal life. If you look up any of these conditions, they do state this as well.

I totally agree, I myself just started on Hydroxyurea , first, it was every day, but my platelets went way up, so now we are trying three times a week, and will go in for another blood test to see how that’s going. I have no side effects from this drug and feel lucky for that. The way I look at it is, its like a recipe, sometimes you have to add and subtract things to find out what works for your body. I am also Jak 2. You need to inform yourself and write down all your questions for your doctor, and always get a second opinion.

I am on it for almost a year. I read it takes about six months or longer to get the dosage correct and that was about right. Started off with 500mg daily and my platelets dropped down too low after about four months. I was having some teeth sensitivity, small brown spots on my skin and hair loss. Went down to five days a week and now currently on three days a week for about four months. Side effects have basically disappeared with the lower dosage. I see my platelets crawling back up and don't want to up the dosage again but time will tell. I just am grateful the medication works and that is it very inexpensive. Do you have PV? or ET? Jak2 positive labs confirmed my PV.

My comment is an opinion based on conversations I had with hematologists whose credentials I respect soon after receiving my JAK2 bone marrow results. In vet school, we were required to purchase a computer instead of a microscope to start our freshman year so we could learn how to find and evaluate information. We were told that vetting articles published in peer-reviewed journals and books published by academic publishers took so much time that their information could be years old by the time they were issued. When I want the latest information or opinion, I consult directly with the experts.

I am not arguing the pathophysiology of ET. That's basic science of cells and cytology. You (and some organizations) and I disagree on whether to call it "cancer." I've had breast cancer and bilateral mastectomy. I am not afraid of the C-word. I choose to listen to hematologists (my personal doctor and others) who told me adamantly, "You do NOT have cancer. You have a blood disorder." Others in this group have been told the same thing by their doctors. Let's agree to disagree.

I totally agree, I myself just started on Hydroxyurea , first, it was every day, but my platelets went way up, so now we are trying three times a week, and will go in for another blood test to see how that’s going. I have no side effects from this drug and feel lucky for that. The way I look at it is, its like a recipe, sometimes you have to add and subtract things to find out what works for your body. I am also Jak 2. You need to inform yourself and write down all your questions for your doctor, and always get a second opinion.