Thursday, June 7, 2007


My platelets were too high, as was my White blood cell count so the decision was made back in January to put me on Hydroxurea. They told me that the benefits outweigh the risks, and, not only would it suppress the production of my platelets and WBC's, it would suppress red blood cell production as well. They didn't really go into any side effects. Although I did know that it was believed that Hydroxurea could potentially lead to forms of leukemia (AML).
Initially I was taking 3 pills a day, two in the morning and one in the evening for a total of 1500 mg. That lasted for about two months and now I'm currently taking 2 pills in the morning for a total of 1000mg. For a while I didn't think that I was experiencing any side effects from the drug but the longer I take it I'm convinced that the constant phlegm draining in my throat and the occasional tightness in my chest and the feeling that my heart is racing may be caused by this drug. The doc gave me Prilosec to combat the potential heart burn I might be experiencing and made me an appointment to see a cardiologist to get a full check up on my "ticker". I'll let you know how that goes.
During a second opinion quest on my treatment and management, a leading specialist suggested that I not take hydroxurea. It was his belief that"we" tend to over treat this condition and that phlebotomy alone will sufficiently reduce the RBCs, Hemoglobin and Hematocrit such that a thrombotic event would not be possible or probable. H e didn't think that it was necessary to treat the high platelet count. In my case the high platelet count led to a condition called Von Willebrand's disease, where, in layman's term, the platelets malfunctioned and would not clot. So even though I had a high platelet count, I had a tendency to bleed. Which manifested itself following my bone marrow biopsy back in January.
I'm still taking the hydroxurea despite the second opinion, and other than the potential heart burn and the phlegm in my throat I really don't notice any side effects to the drug. Most importantly, my blood counts, including WBCs and the platelets, have all been in the normal level for the last three months.


Mary said...

Thank you for your comment. It helps my husband, John, to know that others are going through this too. I wish you luck with your PV. For eleven years, John did pretty good. I appreciate that someone else is writing about this. I also subscribe to a MPD email list. I'll send the web address, but you can search Google for MPD-Net. There's another one at AOL, but I don't know anything about it.

6Monkeys said...

Mary - Thanks for the information. As you can see I'm early in my battle with this disease and I still have alot of unanswered questions. I guess we all do.

Mary said...

An informative website.

Sign up here for the MPD email list. I'm on this one, and it is very good, with people with MPD's.

Robert said...


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