Polycythemia Vera [posted 8/11/98]
Question: My father is currently 57 years old and was diagnosed with Polycythemia Vera 7 months ago. His treatment started immediately by phlebotomy and baby aspirin to maintain a hematocrit level below 47 ml/kg while decreasing blood viscosity. Although this seemed like the solution to his problem for the time being, his platelet level kept rising from 400,000 at the time of diagnosis to 600,000 recently. He also has a blood iron level of 4.3 Umol/L . Besides the Blood Picture tests which he now does biweekly, he also conducted the following tests:
Ultra Sound: Spleen, Liver, kidneys all appear to be normal.
Bone Marrow Examination (Conducted After Blood Drawing ): Normocellular and normoblastic marrow showing active granlopoiesis with slight eosinophilia. Megakaryocytes are slightly increased in number, but of normal morphology. There is no evidence of hypoplasia, leukemia or malignant infiltration at the site of aspiration . There is no evidence of myelofibrosis. Iron stores appear depleted.
Although the hematocrit is now under control by continuous blood testing and intermittent blood drawing (as needed), the platelet level seems to be in continuous rise. If it continues to do so, at what level should he start to take any further action and what would that action be? I have heard that there are more than one possible courses of treatment for cases that cannot be controlled by phlebotomy and aspirin alone. These include Hydroxyurea Interferon Alpha and P32. Can you please explain briefly the advantages and disadvantages of these different treatments and which would be the preferred one? Should he be taking supplementary iron at this stage or not? What are the names of the Prominent Institutions in North America that treat this disease and how much time and money (rough estimate) would be needed to treat such a case for someone with no medical coverage and currently lives outside North America ?

Answer: Most physicians usually start treatment above 500,000 and give chemo suppression at 1,000,000. Aspirin is usually given between 500,000 and 1,000,000, but some physicians will give chemo suppression at 500,000 - especially if there is a high risk of stroke (vascular disease etc.). The advantages of each mode of treatment really vary with the patient and their individual risks. The usual sequence is hydroxyurea, P 32 and Interferon - as each one loses its effectiveness - this is usually done by toxicity and cost. He should not take iron. As to the institutions, any of the large cancer centers would treat P-vera. This would include Sloan Kettering, Roswell Park, Massachusetts General, etc. Those would be my picks especially if coming from Africa/Europe/Middle East. The costs would vary with the needed treatment. Hydroxyurea is fairly cheap.

Polycythemia Vera and Marijuana
Question: My Mother has been very ill for three years now with three MI's and Polycythemia Vera. She is in severe pain and nothing really helps her. Would marijuana help her control some of the pain she is in? I would love to see her have some quality of life.

Answer: Possibly, but why isn't she getting some narcotics? If her doctor isn't addressing her pain, she needs another opinion. It�s very uncommon to have intractable pain if the physician is working on it properly. Also, I'm not sure where the pain is or the cause.

Polycythemia Vera
Question: My friend has been diagnosed with Polycythemia Vera. Could you give me some information on this?

Answer: Polycythemia Vera is a relatively common disorder which affects the bone marrow, usually in older individuals. This is a type of disorder called a myeloproliterate disorder and results in the overproduction of blood cells, platelets, and sometimes the while cells. It is usually seen after mid-life and the cause is not known. Therapy in the initial stages is merely blood donations by the affected individual to lower the blood count. The risk of the high counts (especially red cells) is a stroke or blockage of small vessels as the blood becomes too "thick". Hydroxyurea is the drug commonly used and achieves "remission" about three- quarters of the time. Any hematologist would be familiar with and able to treat this disease. It is relatively simple to treat for the first few years in most individuals and does not require a "super-specialist" unless common treatment fails.


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