2007.04.21 – Options limited for blood illness (PV)


Northwest Herald – Crystal Lake,IL,USA

Dear Dr. Gott: Options limited for blood illness

Dear Dr. Gott: My husband, who is 51, has polycythemia vera. At least one week every month, he is either vomiting or sleeping almost 24 hours a day. When he gets to this point, he calls the doctor’s office, and they do a blood test to see if he needs to have a pint of blood withdrawn. He always does need it by then.

I think they ought to be able to do something for him before he gets to the point of being so sick he can’t function. It seems like there is more they could do for him.

Now he has calcification in his aorta. The doctor told him not to worry about this. I think something more could be done for him. His oncologist/hematologist told us he couldn’t do anything for him and that he should just go home and wait to die. I have tried talking to the American Cancer Society and the Leukemia and Lymphoma Society but can’t get a lot of information about this disease.

Dear Reader: Polycythemia vera is a chronic health disorder marked by an overproduction of red blood cells, leading to thick, iron-rich blood and circulatory problems. The cause is unknown.

The most common treatment consists of periodically withdrawing a unit of blood to reduce the blood’s thickness. Chemotherapy with hydroxyurea has also shown to be effective in individuals who cannot tolerate phlebotomy or require a combination of therapies for reduction of symptoms.

Other therapies include interferon-alpha (a natural body substance to decrease marrow production), low-dose aspirin and radioactive phosphorus. I am not aware of any new breakthrough therapy.

I disagree with your husband’s insensitive hematologist (who gave him a death warrant). Your husband will probably continue to live, without restrictions, for years – providing he subjects himself to periodic blood-drawing that could, I suspect, be better scheduled (before your husband experiences symptoms).

I am sorry I cannot be of more assistance helping you cope with a difficult situation. But I would suggest that a more caring hematologist might reduce your stress level. For more information, I suggest you visit www.leukemia-lymphoma.org, www.polycythemia.org and www.nhlbi.nih.gov.