Marrowforums - Thalidomid

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- - Thalidomid (http://forums.marrowforums.org/showthread.php?t=3868)

Hi
I have question.
I start new treatment with Thalidomide anyone have experience???
Is that good???:confused:

Hi alawe,
You know I got the dx MDS Interm-1 2006. I received supportive therapy - Txs, Desferal and Exjade for iron overload and Neupogen for low WBS until 2010.

My dysfunctional platelets had decreased to 22 and I was afraid of a stroke. Then I accepted Thalidomide in a low dose, 50 mg/day, + Prednisone. My WBC decreased and I could only tolerate Thalidomide 4 caps á 50 mg/day.

After 4 weeks my platelets started to increase and much later reached 180 - very high for me who had severe fibrosis from dx. My HGB increased and after 3 months I didn't need Txs - I had been Txs dependent from dx. My WBC increased very slowly and after 1.5 years I could stop taking Neupogen.

After almost 3 years my counts decreased and now I am trying Revlimid. Last week I received blood unit number 179 and 180.

About 30% of MDS patients respond to Thalidomide and the median time for response is 9 months but som individuels respond up to 3.5 years.

Hope you will have a positive response without adverse effects :)!
Kind regards
Birgitta-A
74 years old. Del12p and -X.

Hi alawe,
Revlimid is the best drug for del5q patients with about 80 % responding.
Kind regards
Birgitta-A

Hi Birgitta-A
Thank you very much i was confused about Thalidomide. now because of you i knowing some thing. Thanks...
About Revlimid i know it is best drug for me but i think you know my story i live in iran and embargo ....
Any way thank you i hope and i know Thalidomide is good for me...
About side effect...
Am i losing my hair ????
Thanks

Hi alawe,
You know Thalidomide is an old sedating drug that can cause severe birth defects. It is not a chemo and doesn't cause nausea, loss of hair and so on.

It will cause tiredness so it should be taken before you go io sleep. Then it can give constirpation. The most dreaded adverse effect is neuropathy, nerve damage, with walking problems. That is why Revlimid now is a much more common drug though every tablett costs about 20 imes as much as Thalidomide.
Kind regards
Birgitta-A