thalidomide therapy

[Ita]

Hello, i am Ina, i just joint in this group today. My father have MDS abt 2 years ago and for the first time only his platelet drop ( 60.000 ), his red blood cell still normal and he got thalidomide 2x1 cap everyday.
During he take thalidomide, his platelet is abt 100.000 lekosit abt 3000 and Hb still normal. But, many side effect of thalidomide such constipation, cramps, etc.
On December 2011, he admission to hospital bcs shortness of breath.
After that, his hemoglobin slowly down and his lekosit too.
His hemoglobin abt 9.5 lekosit abt 2000 and platelet 30.000 and the Dr increase the dose of thalidomide 2x2 cap per day.
After 10 days take 2x2 thalidomide, my father look very pale and he dont have energy to wake up and he is very shortness of breath and he admission to hospital now.
The Dr check his blood and Hb only 6.5 Lekosit 1300 Thrombocyt 17.000
He got 4 bag red blood transfusion and 4 bag throbocyt transfusion.
Now, his Hb 10.5 but thrombocyt 14.000
The Dr give Cholescor cap 3x2 per day and thalidomide 1x1 per day.
Any person in here who have experience like my father?
Thanks.

Ina

[Birgitta-A]

Hi Ita,
You don't write how many months your father has been treated with Thalidomide. After about 9 months many patients loose the response but there are patients who respond much longer time. Here is a review about Thalidomide:
http://forums.marrowforums.org/showthread.php?t=1041

If he not is responding any longer the doctor should try another drug for example Revlimid if your father still has low risk MDS otherwise Vidaza that is the first drug for high risk MDS according to many doctors.

Both Thalidomide and Revlimid are often combined with Prednisone or a similar drug.

June 2010 I started with Thalidomide 50 mg/day + Prednisone 20 mg/day (it should have been 30 mg/day but that dose gives me sleep problems). My WBCs decreased and I can only tolerate Thalidomide 50 mg four times a week. Then I continue with Prednisone 5 mg/day. After 4 weeks my platelets increased from 22 to 43. After 3 months I didn't need txs though I had been tx dependent since dx 2006. My counts are still OK after 23 months.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006

[Ita]

Dear Birgitta,

Thanks for your info.
My father take thalidomide since April 2010, almost 2 years.
And his thrombocyt only 11.000 now and he still in hospital. I ask the Dr but Dr only say to continue thalidomide ( 1x1 per day ) and give cholescor to help maintenance his thrombocyt. I read cholescor is indicate to reduce cholesterol but the Dr say its can help to maintenance thrombocyt too. And i ask if any other therapy but the Dr not answer yet.

Can i know what your drugs now ? and how many your thrombocyt, lekocyt and haemoglobin ?
And what you mean with : After 3 months I didn't need txs though I had been tx dependent since dx 2006

Thanks alot and regards,
Ita

[Birgitta-A]

Dear Ita,
Your father had a very good response when he was treated with Thalidomide but as far as I understand he should try some other drug now for example Revlimid - a similar drug.

At dx 2006 my HGB was 7.6. I started at once with blood txs and received 142 units of blood during 4 years. My dysfunctional platelets decreased slowly and May 2010 they were only 22. June 2010 I accepted Thalidomide 50 mg/day + Prednisone with positive response. After 4 weeks my platelets were 43 but my WBCs decreased so I continued with Thalidomide 50 mg 4 caps/week + Prednisone 5 mg/day. Since Sept 2010 I have not needed blood txs.

My latest counts (yesterday) were: HGB 12.4, WBCs 3.9 and platelets 93.
Kind regards
Birgitta-A