Venetoclax and Vidaza

[Cliff Potenza]

Hi. This is my first post and I am looking for anyone who can share their experiences with the addition of Venetoclax to their Vidaza routine. I was diagnosed with MDS in October 2015 and after a “wait and see” period I was started on a 5 day regimen of Vidaza in Feb. 2016. When I started my BMB showed 4% blasts. After 3 years the Vidaza treatments have lost much of its efficacy. My blood counts have been dropping and I have needed a couple of Platelet infusions as well a Red Blood tranfusions. In 2017 my BMB showed blasts of 7% then 12% and in December 2019 18%. I started Venetoclax 2 weeks ago with 100, 200, 300 400mg ramp up. After the first dose my counts dropped so we put off the 200mg dose for one day. I am now regularly taking 400mg. I know that the analysis of blast results will take a couple of cycles to evaluate the efficacy of the treatment but I am curious whether anyone has had any experience with their blood counts rising or anything else you can tell me about your experience.

[Pat Lawson]

Hi Cliff, My husband was diagnosed with RAEB2 in the fall of 2018. His blast count at that time was 12%. He started in a trial for Venetoclax November 2018 of 3 shots per day of Vidaza for 7 days and he would also take 400 mg per day of Venetoclax for 14 days. This was done on a 4 week cycle. It was very rough in the beginning months he was in a lot of pain and he continued needing blood transfusion. By January 2019 he was retaining hemoglobin levels and he wasn’t needing transfusions anymore. By the late spring/early summer of 2019 his blast count was down to less than 2% and they said he was considered in remission. Throughout his white blood counts were always low as were his platelets. Through the summer his hemoglobin levels stayed up but then in September he came down with an infection and ended up in the hospital for 5 days. Ever since then his counts have been staying down and he has been having to have blood transfusions again since November. He was told a couple of weeks ago that he could not continue in the trial because his counts are not recovering. They performed a biopsy last week and we are waiting for the results. Since he hasn’t had treatment for about 6 weeks now he is more active than he has been this whole passed year. His life this passed year was mostly spent in bed because he was so fatigued all the time. It really makes you think about quality versus quantity. Just remember everybody is different in how their body reacts to these meds and throughout his treatments the doctors would tell me of others in the trial that were being able to go on living normal lives. Take Care & God Bless

[Cliff Potenza]

Pat,
Thank you for that information. I don’t know if I am unusual but while on Vidaza (5 days in a row by infusion every 28 days) for the first year(2017), my counts were low but steady (RBC 3.4-4.0 WBC 1.5 -2.5 HG – 10-12 Plat 40 -100). In the second year(2019) of Vidaza treatment they change a bit (RBC 4.0 – 3.0 WBC 2.2 -1.5 HG 12 -9 Plat 80 – 60) I my third year (2019) the counts started to drop (RBC 3.0 – 1.8 WBC 1.5 -.3 HG 9 – 6 Plat 60 -10). I started Veneclax 2 weeks ago and am waiting for some/any results. However I have never had any real bleeding incidents… I bruise easy but even when I cut myself I clot fairly quickly, I have occasionally bin fatigued but I still manage to play 18 holes of golf 2x a week. Twice inn the last few month I have had a couple of unexplained fevers which hospitalized me for one week each. They never were able to explain the reason for the fever and never found any infections. So now I take prophylactic antibiotic, anti viral and ant fungal. I take 400mg/day of Venetoclax and after my next round of Vidaza (in 2 week) we’ll do a BMB to see whats going on. I am cautiously optimistic. I hope your husband finds some combination of drugs which can treat him succesfully.

[Wen Ouyang]

Hi Cliff,
My dad also started Venetoclax and Vidaza treatment 3 months ago and he just finished the 3rd cycle. My dad was diagnosed as MDS patient with 16% blasts in June 2018 and started Vidaza in Aug 2018. His blast was reduced to 9% in Sep 2019 but counts are not catching up. So our doctor recommended us to try venotoclax+vidaza. In the first two cycles he was tolerating it well, although we didn’t see the counts improved (our doctor told us it is normal). We continued to 3rd cycle and it became tough for him. He had been having different infections and his counts dropped further (WBC 0.5, plat 7). He has been receiving frequent blood transfusions as well(every other week).

After a week of 3rd cycle, he seems to recover a bit and we will see if there is any improvement to his counts.
we were advised that they may stop the treatment if they don’t see that is working for him, so we don’t know if there will be 4th cycle. Finger crossed for us! and will keep you posted for further results.

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