revlimid for 5q- with no history of transfusions.

[plantcollector]

Lindajo, thanks for the information about Washington University and the name of Dr. John DiPersio. I was not aware of that. I live only about 20 miles away. Guess we cannot agree with what every doctor thinks. My only concern right now is my platelet count. The current hematologist seemed to think that a high platelet count was not related to clots, heart attack or stroke. If not, then why did I have another impression? I was prescribed Anagrelide for 6 years. Now I hear that it contributes to bone marrow fibrosis. I am no longer taking that. I suppose my platelets will be sky high in a few months. My hematologist seemed to think that Revlimid was the right way to go. I do not have any problems perking along with the low red counts. Has anyone ever heard how dangerous it is to have very high platelets???I’d rather not take anything before I have to. I have never had a transfusion or any other treatment.

[Zoe]

High platelets can cause problems. Why wouldn’t they cause clots, heart attacks or storkes? How high are your platelets?

Zoe

[Kolu]

My fathers platelet count is 1900 10^9/L. The normal range is 150 – 400 10^9/L. He has been put on a drug to thin his blood to avoid clotting. In the mean time the doctor is trying to give him drugs to reduce the platelets. I think it is very important to reduce the platelet number as it could lead to all of what Zoe mentioned. Being on blood thinners are also not very good as if you make a slightest cut one could bleed excessively. My fathers white blood cell counts are normal. It is the haemoglobin which keeps becoming low. Currently his is about 8.9 g/dl. At the time of diagnosis his haemoglobin had gone down to 5.3 g/dl. Then he complaint of tiredness and mild chest discomfort. That was mainly due to lack of oxygen in the blood due to low haemoglobin. I feel my father is in his early stages. Has anybody used Thalidomide and then switched over to Revlimid? My father was on Thalidomide for about 3 weeks now and he is about to switch over to Revlimid. Has anybody got good results with Revlimid? If so how soon did you see results?

[plantcollector]

At one time my platelet count was 1,800. I have no idea how long it had been that high. I had no symptom at all of anything being wrong. Now without Anagrelide I suspect it could go back to that level again. I will consult with another doctor at the end of the month. I do NOT want to start Revlimid at this time. Maybe there is another alternative to get the platelet count down.

[Author]

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