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  #1  
Old Sat Nov 18, 2006, 09:49 PM
knstone knstone is offline
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Location: Cincinnati, OH
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Question of others using Thalidomide

I've had a great response to Thalidomide. It seems that many doctors don't try it. I recently noticed that UCLA has a study going using Thalidomide for MDS.

Have any others on this site had good results?

If it stopped working, what did you try next?

Just trying to get info and see if the forum will generate some usage.
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Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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  #2  
Old Sun Nov 26, 2006, 05:38 PM
jennie jennie is offline
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Wow, congratulations on the great response. You give me hope!
I think the new drug Revlimid is a form of thalidomide, and is a great hope for MDS. I think I am spelling it right...
keep up the good work!
Jennie
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Still unclear if AA or MDS. Diagnosed first in March, 2006. two transfusions, procrit holding steady now
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  #3  
Old Sun Nov 26, 2006, 06:51 PM
knstone knstone is offline
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Hi Jenny,

Glad the info encouraged you. Don't ever give up and keep up a positive attitude. You have to be your own advocate with MDS.

Have you had a bone marrow biopsy? Hopefully you can start on a drug that will help your MDS. A doctor that has experience with MDS is very important.

Kirby
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Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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  #4  
Old Mon Nov 27, 2006, 08:24 PM
larry gard larry gard is offline
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Vidaza and Thalidomide

Kirby and Other Interested Parties:

Good to see your post about Thalidomide. Currently, I am in my 5th 28 day cycle of Vidaza and Thalidomide. I'll be posting detailed information about my case and results next week prior to starting my 6th cycle. At that time, I'll have current counts, etc.

Larry Gard
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  #5  
Old Wed Nov 29, 2006, 03:54 PM
John R John R is offline
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Quote:
Originally Posted by knstone View Post
I've had a great response to Thalidomide. It seems that many doctors don't try it. I recently noticed that UCLA has a study going using Thalidomide for MDS.

Have any others on this site had good results?

If it stopped working, what did you try next?

Just trying to get info and see if the forum will generate some usage.
Thalidomide didn't work for me. It did give me neuropathy in the toes of both my feet.
John MDS-RCMD now 46, dxed at 42.
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