Dacogen / Vidaza - whats next?

[Susan L]

Hi everyone - I have tried ATG (was good for 7 years-very good reponse) Tried Dacogen - didnt work (BMB alittle worse) then went to Vidaza (didnt work - BMB alittle more worse) I thought I read here about another treatment in pill form. Please let me know if it rings a bell with you. Thank you

[Mary4Mike]

Are you thinking of Revlimid?

[Greg H]

Susan,

There is Revlimid, but that's mostly good for folks with deletion 5q. I imagine if you had del5q, you would already have had Revlimid.

There's a new drug that's in clinical trials partially sponsored by the Leukemia and Lymphoma Society. It's called ON 01910.Na or trade name "Estybon. " NIH is one of the trial sites. I understand that it has shown promise in folks with Trisomy 8, as well as other folks. Take a look at this thread (http://forums.marrowforums.org/showthread.php?t=1499) for some information on results presented at the recent ASH conference. It might be worth checking out the Clinical Trials, particularly if you still have contacts at NIH.

Have you decided against transplant?

Take care!

Greg

[Susan L]

Susan,

There is Revlimid, but that's mostly good for folks with deletion 5q. I imagine if you had del5q, you would already have had Revlimid.

There's a new drug that's in clinical trials partially sponsored by the Leukemia and Lymphoma Society. It's called ON 01910.Na or trade name "Estybon. " NIH is one of the trial sites. I understand that it has shown promise in folks with Trisomy 8, as well as other folks. Take a look at this thread (http://forums.marrowforums.org/showthread.php?t=1499) for some information on results presented at the recent ASH conference. It might be worth checking out the Clinical Trials, particularly if you still have contacts at NIH.

Have you decided against transplant?

Take care!

Greg

Thank you both for replying to me w/suggestions. I do not have 5q so the one is out. The doctor said he was going to meet w/his partners and see what would be an option. We did touch the stem cell transplant but he did not seem to be going for that option. I am meeting w/him again on Jan 12 to see what is available. I will read about the Esybon. Thank you both.

[Neil Cuadra]

Thank you both for replying to me w/suggestions. I do not have 5q so the one is out.
Revlimid may not be completely ruled out. Revlimid is particularly successful for patients with 5q- syndrome but it can be used to treat patients without 5q- as well. For 5q- it's usually the treatment of choice; in other cases they weigh it against other treatment options. Revlimid has even been used in combination with Vidaza. I don't know what treatment they will think is appropriate for you but I'm glad your doctor is consulting a team so they can combine their expertise and experience.

[Susan L]

Thank you Neil for replying. I am going to keep my fingers crossed that they find something - Happy holidays to you and yours.