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Discussion:
when vidaza doesn't work....
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Hi All,

I'm just wondering if there is anyone out there who has taken vidaza, but then it stopped working? What did the Dr. recommend to do next? Any info would be appreciated.

Thank you,
Posted on 12/15/10, 11:40 am
14 Replies | Most Recent Add Your Reply
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Comment:
Email me when others reply to this topic help
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Reply #1 - 12/31/10  3:49pm
" hi Paula. sorry you haven't had any responses so I wanted to give you at least a small something. I have heard of some on here doing the revlimid I think it is called. poke around the forums or do a search and maybe you can find something. Good luck! "
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Reply #2 - 07/04/11  5:17pm
" Wondering how long you did the vidaza. i have heard it takes quite sometime with some folks to get them going good. I am going to have to be starting soon and I have been trying to do a lot of research on the subject. Keep us posted on your condition. We will keep you in our prayers. "
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Reply #3 - 01/10/12  8:21pm
" My husband's hematologist said if Vidaza stops works, perhaps Dacogen will start the ball rolling. Good luck to you. This is a great site for info and uplifting spirits. "
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Reply #4 - 01/10/12  11:55pm
" Paula, I'm so sorry Vidaza isn't working. I am to start within the next couple weeks. My doc did a BMB a couple weeks ago and will schedule one after 4 cycles to see the progress. He won't even discuss after the 4 cycles until we are there. Has you doctor said anything about a transplant. Just have to think positive. Hugs! "
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Reply #5 - 05/31/12  12:43pm
" After 5 rounds of Vidaza for my husband (and not working), it was recommended by the MDS specialist at Moffitt Cancer Center to go into a clinical trial. That will start in 2 weeks. Fingers crossed please. Even though I had stated that perhaps Dacogen would work if Vidaza doesn't, the specialist told us that if one doesn't work neither will the other. "
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Reply #6 - 06/03/12  1:03pm
" Millie: Just wondering if you know which clinical trial.
I only made it through 3 cycles of Vidaza and should get the results from the bone marrow and the next phase of treatment on Tuesday.
This disease is different for all of us and we all respond differently to treatment. "
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Reply #7 - 06/05/12  5:05pm
" It seems my system did not respond to the Vidaza after 3 cycles so the next is Dacogen. My Doc hopes the body will respond to the Dacogen. No discussion as to what happens next just have to keep thinking positive that if one doesn't work the other will. It has not progressed to Leukemia as yet so that is good news.

I hope the clinical trial will work for your hubby, it doesn't appear to be an option for me. I was rejected in 2009 as being too old for one and not sick enough for the other. I turned 76 this past January.

Let us know when he starts the trial. "
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Reply #8 - 06/06/12  11:12am
" Becky Jean,
This is all so confusing. The MDS specialist in Tampa told us that if Vidaza doesn't work neither will Dacogen since they are basically the same. I plan on checking this out in case I heard incorrectly.
Joe's hematologist thinks Joe should get into a Phase 3 trial not the Phase 1 which he was heading into (we are looking for survival as we all are). That one is strictly for platelets (eltrombopag). Right now we are waiting for the specialist and hematologist to put their heads together as to what route we should be travelling. But we finally know that Joe is Low Risk - that's at least one good thing. BTW, Joe is 78 so I'm sure too old for most of these trials and way too old for a transplant. "
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Reply #9 - 06/06/12  12:54pm
" Millie:

We all have MDS/ abnormalities . Mine is MDS with Trisomy 8
so we respond to treatment differently. I can only hope that the DACOGEN will work when the VIDAZA didn't. The drug is similar as with other drugs like antibiotics. Sometimes when there is an allergic reaction to one, the doctor will prescribe another.

I also think doctors have different opinions regarding treatment.
I see no reason not to ask the doc if he would consider giving Dacogen a try.

Last year my doctor attended a seminars in DC where he was one of the featured speakers and I have complete confidence in him. He does his best to explain everything to us in language that we can understand.

Last year he attended a seminar in California attended by Oncologist from all over the world and this is the recommended treatment for this disease. He doesn't discuss what if's. So that means after 4 months of Dacogen it's another bone marrow biopsy and follow up care is determined by the results.

Do keep us informed on the trials. Blessings to you and Joe and the rest of this crew.



I wish "
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Reply #10 - 06/07/12  7:49pm
" Becky Jean,

You are so right about doctors having different opinions. Joe's hematologist thinks Dacogen might be an option (after the newest BMB comes back) while the MDS specialist says if Vidaza doesn't work neither will Dacogen. Guess we have to flip a coin. Seems we are between a rock and a hard place. "

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