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  #1  
Old Tue Apr 9, 2019, 03:40 PM
HappySoul3 HappySoul3 is offline
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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.
Thanks.
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  #2  
Old Tue Apr 9, 2019, 03:51 PM
DanL DanL is offline
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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
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #3  
Old Wed Apr 10, 2019, 02:05 AM
Hopeful Hopeful is offline
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Quote:
Originally Posted by HappySoul3 View Post
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.
Thanks.

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.
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58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #4  
Old Wed Apr 10, 2019, 04:08 PM
HappySoul3 HappySoul3 is offline
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Smile 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.
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53 years old. Hypoplastic MDS, on Vidaza awaiting transplant.
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  #5  
Old Sun Jan 12, 2020, 10:25 AM
bolotin bolotin is offline
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I actually was on Vidaza before hospitalization. I did have constipation with it. Otherwise, I felt fine. That was the beginning of my treatment.
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  #6  
Old Sun May 31, 2020, 07:15 PM
edwardbear edwardbear is offline
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Smile 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.
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  #7  
Old Mon Jun 15, 2020, 09:12 AM
Lgvenable Lgvenable is offline
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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.
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MDS EB2 diagnosed 5/12/20 extremely high risk completed first Vidaza cycle, ventoclex 4 x 100 mg daily ANC 0.1

Last edited by Lgvenable : Mon Jun 15, 2020 at 09:25 AM.
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  #8  
Old Wed Jul 8, 2020, 06:47 PM
HappySoul3 HappySoul3 is offline
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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.
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53 years old. Hypoplastic MDS, on Vidaza awaiting transplant.
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  #9  
Old Wed Jul 8, 2020, 11:03 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by HappySoul3 View Post
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?
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