Is Remission Possible with MDS ?

[vickij]

Has anyone with MDS gone into remission ? I went to Dr at IU hospital on Monday thinking that I would get results of tests & final instructions for transplant that was set for June 24th. They did blood work before my appt. When Dr looked at results of blood counts he said my counts were all in normal range. My hemoglobin has been 11.5 for over a mo. Other counts were good too. When I mentioned that I had taken revlimid for 2 weeks last mo. he got excited & looked at list of other meds I was taking. He saw that I was taking prednisone 5mg ( 1 a day) & cyclosporine 25 mg ( 2 twice a day) and I had ATG in April 2012. He thinks it is possible that the revlimid combined with the other treatments and kicked in a response. He said he was putting transplant on hold until he gets results of blood work that he wants me to have on June 10th. He also wants to test cyclosporine level. Dr said he has only seen this happen once before. I was thrilled & in shock. Now I am really nervous about results of next blood tests. His nurse told me to go ahead and prepare for transplant ,just in case. Scared & Nervous.

[bebop]

I am not an expert but I have read on here that remission is very possible I think. This sounds very encouraging!

[Lulu]

I have. See the thread on vitamin k. Am aware that things may go downhill again though, and I feel like I cannot turn my back on this illness for a second. Good luck x

[kgtuck]

Signed in today to share my good news! Yesterday was my 4 year anniversary of my success with Dacogen, and my counts are at an all time high hgb 14., platelets 245, wbc 3.8. Then I read your message asking about remission. The doctors tell me that I am in remission (not like other cancers) I must continue the treatments each month--no argument there! I know that the success of treatments depends alot on the subtype, age, other health issues, etc. and response is different for each of us; but, I hope that I can give some hope to others just beginning their treatments!!!

[maggiemag]

Hi. I was on watch and wait til last June, 2012 when I was put on Revlimid. I was on full dose for only 2 weeks, then half dose for another month. Then I developed severe hyperthyroidism from the drug and had to stop it. My HB stayed in the 10's for a while and I had Aranesp injections as well before that. Now my HB ranges from 10.6-11.5 this week. My honc does say that I am in remission and she suspects another BMB would not show any clones. She says it is nothing short of miraculous! I do have a history of being VERY sensitive to drugs. I have not had any treatment at all since last August! I do realize that some day this will end and I will have to go back on the Rev., and probably with Prednisone also to protect another thyroid reaction. She jokes that next time all she's going to do is write the word Revlimid on a piece of paper and stick it to my forehead, as I am so sensitive apparently! Til then I will just keep on *carpe dieming*.

[Cheryl C]

I went from 10% blasts to 2% between Sep 2011 and Feb 2011 without any treatment at all - was having all the tests for transplant at the time. My haematologist was incredulous and had the BMB results checked by 3 different pathologists.

My blasts are still <5% and I went from RAEB2 to RCMD which I still have. I guess that is a sort of remission. I felt as though I had been let out of jail.