Anyone take vidaza before stem cell transplant?
 

Hello,
I am new here. I have hypoplastic mds and am awaiting a stem cell transplant. In the meantime I will be starting vidaza for at least 3 cycles while we look for a donor. I am 53 and wondering what others have experienced on this treatment? Just wondering what I have to look forward to. :o
Thanks.

I have seen a good number of members that have had vidaza as a bridge to transplant therapy, and had it myself prior to transplant.

Vidaza is a fairly mild treatment for most people, but does have side effects, it reduced blood counts for part of the month until your system recovers, which may make you susceptible to infection, bleeding, or anemia. It causes constipation for some, diarrhea for others, along with nausea for some. My advice is to talk to the doctor about the side effects and anything that is happening to you during treatment that is out of the ordinary, no matter how small. Also, be sure to accept anti-nausea meds when offered. It is much easier to take them up front than it is to try and fight back nausea after it has hit you.

Lastly, there are studies that show that bridge therapy may be helpful to transplant by "chemosensitizing" your marrow for the drugs that you will receive to destroy the marrow and defective cells prior to transplant.

Hope this helps, and good luck with the donor search.

Dan

Hello HappySoul3,

I really like your name :)
Have you doctors’ considered immune suppressive therapy (ATG) ?
Is there something that puts you firmly in the MDS camp vs AA?

Of course, if you have already started Vidaza you can disregard my question.

Thank you
 

Thank you both for your responses.

Re Hopeful's question. My diagnosis has been confirmed as Hypoplastic MDS not AA. I am starting Vidaza shortly. Just waiting for the approval for funding.

I have very high-risk MDS and getting regular transfusions of RBC's and my platelets are approaching transfusion level now as well.

I have just come from my hematologist's office this morning. I got copies of all the reports to date as I am trying to keep track of everything since I will be going back and forth between the transplant hospital some five hours away and my local hematologist and hospital here.

Thanks again.

I actually was on Vidaza before hospitalization. I did have constipation with it. Otherwise, I felt fine. That was the beginning of my treatment.

Long Term Vidaza (or Azacitidine as it is known here) user
 

I am not a candidate for a Bone Marrow Transplant, but am a long time patient -my next cycle will be 71 & now out to 6 weekly Cycles. Had Blood Transfusions for 1st Three Cycles only. Hope all goes well for you.

MDS high risk in Broken Arrow Oklahoma
 

I was diagnosed on May 12 with extremely high risk MDS EB2, my bad luck to have 5 abnormalities in my marrow, so my ipss-r score is very high 8+. My hematologist says I’m 6 to 8 weeks from starting the search for a donor. I’ve completed my first Vidaza cycle, it’s caused a bad dry cough.I’m also taking 4 venclexta tablets a day 4. X 100mg.

Apparently venclexta is the new gold standard with vidaza for AML.anyway, I’m 66 and retired, but Genentech is giving me the meds, saving 8-10000. Usd. I’ll follow your thread, I’m waiting another week or two..dependent on blood test results..to start cycle 2. Meanwhile it’s 4 tabs of venclexta and 56 Oz of water a day.

As a comment I’d gone to my cardiologist thinking my fatigue was stent related - and I really mean extreme fatigue ( hem was 5.2) low and behold I was immediately admitted toTulsa St Johns downtown where all the high powered hematologists are and find out I’ve got MDS. Having already turned the issue over to God, Ive decided win or fail to keep a sunny disposition.

Post transplant and doing okay
 

I last posted over a year ago before I knew if I had a stem cell donor. I got one and my transplant was Sept. 17th 2019. I have managed pretty well since and no serious complications except mild GVHD of the Gut. It was a heck of a tough journey and honestly I would not do it again. I am still expected to be feeling low energy and other things for another year or so but am hopeful that I have a longer future now.

I just thought I would update since I have not been back here since my previous posts. I wish everyone well.

I'm so glad to hear from, you, HappySoul3.

Going from very high-risk MDS, through a successful stem cell transplant, and into the recovery phrase, even a long recovery phrase, is quite an accomplishment.

Congratulations to you, your donor, and the doctors and nurses who got you through the process. And good luck for the coming months.

Do you have any advice for others who find themselves where you started?