Milburn - Information on Radioactive Phosphate P32

[Milburn]

I have being suffering from ET for the last 11 years. This has been controlled very successfully with Hydroxycarbamide through this period. Earlier this year suffered leg ulcers. After circulation checks this put down to the prolonged use of Hydrox.

Hydrox treatment stopped in April and ulcers started to heal. Put onto Anagrelide in April ( now at 2 mg morning and 1.5 in evening. Despite this Platelets continue to rise now at 1,320,000.00. Anagrelide not working. Have now been offered the option of either Radioactive Phosphorus P32, Busulfan or Interferon Alpha.

Has anyone any information on these treatments.Incidentally leg ulcers have not quite healed and I am having cramp/burning feelings in lower leg and feet.

[beetle]

My recommendation would be to do as much research into the alternatives suggested then have a full and frank discussion with your haematologist. My gut feeling is that interferon might be the first on the list as it will potentially cause the least “collateral damage”. It is worth looking through past messages on here but if you do a google search for the drugs try to make sure you are reading reputable sites. Good luck with your decision

Best wishes, Jan

[Bluetop]

I would agree with beetle. There seem to be so many developments with Interferon that would suggest to me it might be the best option, but I'd be researching all options. What might be best for one person, might not be for another. Had you yhought of getting a second medical opinion?

[fee13]

I have been told to stay away from busulphan unless you're well into your 70's as the risk of developing cancer is increased over a 10+ year period taking it. I believe radioactive phosphorous was used many many years ago originally but have forgotten the details from studies and why it is not frequently used now. Interferon is the new fad now if tolerated and seems to be having some good results. As others have stated, do your research and ask lots of questions and ask for statistics etc.

[asacker]

I had P32 about 40 years ago, then went onto Hydrocarbamide until recently. It was my understanding that it isn't recommended any more because of the increased risks associated with it. Interferon seems a better bet. I agree that start with the premise to "do least harm" and work down the list of possible medications.

Good luck! Amanda