Experience with Venclexta

• Author
  Posts
• September 20, 2022 at 12:16 pm #58635
  Lawrence Murdoch

  Participant

  I have been on Vidaza (azacitidine) for past 20 months since being diagnosed with High Rate MDS. There has been no change in my low blood counts. We are preparing to try Venclexta as an alternative. Does anyone have experience with Venclexta for HR MDS with or without combination with azacitidine?

  September 20, 2022 at 1:05 pm #58636
  Kathleen Till

  Participant

  Your email came into mine but replied and it went to MDS foundations do not reply box.

  Here is what I wrote.

  I was on Acacitine for 4 months before transplant.
  Biopsy showed blasts were still too high.
  They did another chemo along with Venclexta. Did the job 28 pills over 14 days and went into remission.
  If you are not going for BMT then not sure how this would work for you.
  I had MDS EB2 with trisomy 8 extra chromosome.
  Had transplant last Sept 9th at age 73 and doing really well.
  If you are on Facebook sign in to this page, lots of help from everyone
  There.
  Fight myelodysplastic syndrome

  Do not think my other message will reach you.

  Good Luck

  Kathy

  September 21, 2022 at 9:45 am #58637
  debbie stern

  Participant

  Kathy, may I ask where you had your transplant and did you have a 10/10 match? I am 72 and will need a transplant but only 9/110 match.
  Lawrence, My Oncologist is talking about adding a low dose Venetoclax when my micro dose Decitabine stops working. My understanding is that regular dosing with Venetoclax can drop your counts, so I would ask your Oncologist about that issue.
  I have been stable 3+ years on 0.2mg per kg body weight but we don’t know how long it will work for. Debbie

  September 21, 2022 at 12:56 pm #58638
  Kathleen Till

  Participant

  I had my transplant at Moffitt in Tampa, Florida.
  I had a 10/10 match and we were both negative for CMV, which I understand is unusual and great.
  I was only on 2 pills a day for 14 days before transplant. 200 mg each one.
  Not on anything now except viral pill for another year until I can get Shingles shots.
  My Venclexta was just to kill the blasts.
  Kathy
  🙋‍♀️❤️

• Author
  Posts