My husband was on Ibrutinib for 4 years and recently discontinued it as his disease began to progress. He is now on the ramp up phase of Venetoclax. Prior to beginning Week 1, his platelet count was 70. (It has been low for years, since his initial diagnosis of CLL in 2011). HIs CBC today shows a platelet count of 68. His oncologist told him to keep taking 50 mg for now. Since the starting treatment comes with only 7 tablets of Venetoclax, designated for Week 2, he then told him to take 100mg every other day. We have concerns with that direction. Has anyone stayed on a step up dose for more than the specified time period? Is anyone on long term use of Venetoclax at a dose lower than 400 mg? Your experience will be very helpful to us.
Venetoclax and Low Platelets: My husband was on... - CLL Support
Venetoclax and Low Platelets
Is your husband on any other medication that could potentially be affecting his platelets or clotting ability? Platelet transfusions aren't given until at least under 20 and with counts of 70 and 68, his counts are quite stable.
Have you asked your husband's specialist WHY he being so cautious?
Neil
He is taking Alipuronol daily with the Venetoclax and has done very well for the first 2 weeks. He isn’t on any other medication. We have an appointment with the oncologist Monday and will talk this through, My husband is his first patient in Venetoclax and we are completely comfortable with that. So my husband elected to start the week 3 dose and take it daily until the appointment on Monday. He will have new labs that day as well. We are assuming that Venetoclax at 400mg is what will be necessary to manage the CLL although his WBC is within normal range after just 2 weeks,
Thanks for your reply,
Yes I stayed on the same dosage for a couple of weeks in the ramp up because of issues with my neutraphils and Platelets. I didn't need a transfusion of platelets or neutraphil injections as they recovered before the ramp up was continued. I then got to 200mg and stayed on that for 5 months as my bloods were very good. My white cell and lymphocyte count went below normal around Christmas so I have discontinued Venetoclax since then and my bloods seem to be ok. I did have AIHA before Christmas but only stopped V for a couple of days as it was not thought that V had caused it. I have had numerous treatments over the years and Ibrutinib only worked for me for a year. My lymphocyte count is still low but I am hoping that is a good thing. Will see my hematologist next week as well as my monthly IVIG.
Hi,
I’ve just got to week 48 of a 2-year Venetoclax trial. I’ve had issues with diarrhoea and neutropenia along the way so my dose was reduced to 300 mg in September and 200 mg in November. I’m now on 200 mg for the rest of the trial. My neutrophils are now pretty stable and no more diarrhoea issues. My platelets have bounced around from 55 to 122 during this trial period. In fact, I’ve had platelet numbers in the “normal” range about 10 times since 2007 (in well over 100 blood tests). Numbers like 68 and 70 are normal to me!
I went on Venetoclax in November, starting at 50mg. Immediately my platelets dropped to 70. My hematologist put me on 50mg predisone, and I was stable within a week. I dropped the steroid to 40 for a week, then 30, 20 and 10 and am now off. And my platelets stayed normal. Yay! I've stopped my dosage of Venetoclax at 200 mg. I'm a smaller female, and so far my WBC is at or slightly below normal. And I'm very happy with that. I did the full dosage of Ibrutnib a couple years ago and that hit me hard. Heart issues, gum, etc. So happy with the low dosage, great feeling Venetoclax….for me at least. 
I started Venetoclax 3 weeks ago my platelets count was already low 27 but since hover between 5-15 have has many platelets transfusions and blood transfusions red count now hovers at 7.8 my neutrophils 0.2. The Venetoclax is working well my white count started over 900 now down to 16. Having picc line put in tomorrow my arms are a mess from so many cannula and blood tests. Starting 100mg today. Doctors think things will improve as my spleen and nodes are now reducing daily. Infection markers are decreasing too. Been in hospital now for 4 weeks I’m hoping things will rally and I go home soon.
I used Ibrutinib for five years with excellent results. A year ago my cells mutated and I developed a resistance to the medicine with a significant increase in Lymphocites. April last year started and finished Venclexta ramp up all ok. Shortly after I developed neutropenia, thrombocytopenia and low Lymphocyte counts.
Had to reduce Venclexta to 200 mg. and managed for many months with low levels of white and red blood cell counts but successful in managing lymphocytes .
Just stopped Venclexta Dr believes that I would be better off without for a month or two. Plan to restart if needed.
Unlike Ibrutinib Venetoclax has been rough due to all the hematological side effects.
One and a half weeks without it and my blood levels have worsened. Hoping it is temporary.
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