Polycythemia Vera (Help)

I chose Leukemia - (ALL) as my husbands diagnosis but this is not correct. He has been diagnosed with Polycythemia Vera and Thrombocythemia. This is the overproduction of blood and very high platet count. I know that he literally burns proteins.

We have been told that he has this cancer and then we are told that he just has the syptom of polycythemia. However, he is taking chemotherapy and so much medication.

Has anyone ever heard of this diseases or is currently being treated for it.

I know that the standard treatment is chemotherapy and phelbotomy (literally bleeding the person).

Please help.

Thank you.

hello pamela

i seen your message on this board and would like to talk some more with you. I seen that you have left the message in 2003.
thanks
dawn

I would like to know if Pamila, or Dawn has found any more info on Polycythemia Vera?
I also have this and the only thing any one is doing is drawing blood, when ever I need it.
No one really knows what else, or at least no one has told me what or why it happens.
If eather of you have info, PLEASE let me know.
Thank you, Gene

Gene,
I am interested in learning more about this disease myself. I just found out my husband has been diagnosed with it. I never heard of it before and it sounds really scary. Then I saw the name popping up on pages discussing cancer and got even more scared, but after doing a little research, it does not appear to be cancer, perhaps related, but not cancer.

Big sigh of relief here. I also read about people living for years after the prognosis was less. I am still worried and want to learn more, however. Perhaps if you check this page again, we can talk about our own experiences.

God bless you.
Wheatie

Any info you can give me would be great for me.
My wife has talked with a few about this, but the only thing she's gotten, that I know would help is naturel medican.
I looked at one sight about the Hoxly Clenic.
Some good info there, out side of that I don't have anything.
Gene

Well, since the diagnosis was only last Friday, I am not going to be much help yet. He will be seeing a phlebotomist, if that is what they are called. I did some websearches but have not learned a lot. Anti-oxidants are good, like green tea, not sure what else. He also suffers from diabetes and high blood pressure, as if that weren't enuf.

At least he is getting treated. What is this about "Hoxly Clenic?" I am guessing you may have a typo or two in there, but I have no clue what is supposed to be there. Can you elaborate?

Thanks.
Glenna

I have been diagnosed with this for two years now.if you had a red cell tag test already.you should know 1st step is just to take out blood like donating.no meds have a cbc-and check your counts.I was also told many people who had lupus were missed diagnosed.symptoms are very simalar to diabetes and can throw all your levels off.If the 1st step does not work after a couple of months.Next is chemo. be very careful because a sideaffect of chemo can possible give you luekemia.and then you can not turn away from that so I would think twice about the chemo.
I hope any of this helps. Dr. meekoo dahr and Staten Island university hosp.Natlitt cancer center. Are Great People you can ask them
Ques. about this. Bleeding the person is not too bad when you consider the alternative.
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