Anyone have experience with Venclexta capped at 200 mg?

[Flute117]

I am a 62 yr old woman and will be starting Obinutuzumab in 2 days with Venclexta added my 4th week. I was diagnosed with SLL/CLL May 2019 and was watch and wait until now. It has been confined to my lymph nodes and my blood tests have been in the normal range. Treatment is starting due to increase in size and more areas being affected.

I am on Verapamil for A-fib and because of known drug interactions, my ramp up of Venclexta will be capped at 200 mg.

Wondering if anyone has been in a similar situation with not being able to do the full dosage and what your experience has been.

[Smith123456]

there are many prescription drug for a-fib. verapamil is actually one of the older ones why not inquire form that end

[Flute117 in reply to Smith123456]

Thanks, I understand that, but my Dr and I agree that now is probably not the best time to add changing meds into the mix.

[lankisterguy Volunteer]

Hi Flute117,

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[Flute117 in reply to lankisterguy]

Thank you.

[DRM18]

Hi Flute!

I can't necessarily help, save for this: I'm 7 months into Venetoclax (and Obinutuzumab), full dose (400mg), & I've been on Eliquis the whole time, for blood clots.

I mention that only because I know Eliquis also treats A-Fib--so, if you want to be on 400mg of Venetoclax someday, maybe ask about switching to Eliquis?

Regardless, I've read about many patients achieving a complete response on 200mg of

Venetoclax. Hope you're one of them, if that's the route you go.

--Dave

[Smith123456]

i think you misunderstand what verapamil does to venclexta. I'm pretty sure it slows absorbtion and 1/2 life of venclexta so you don't overdose it. you in effect get the 400 mg benefit with the 200 mg dose. Jeff might be able to expand on that.

[thb4747]

Hi, I’ve been on 200 mg of Venetoclax since November 2018 but, in my case, it’s monotherapy and I did the ramp up to 400 mg first. My dosage was reduced because of side effects. I’ve been declared to be “clinically in remission” for the past 18 months. Not sure if this helps you but feel free to contact me if you wish.

[Flute117 in reply to thb4747]

Thanks for the response. That’s great news.

[Dice70 in reply to thb4747]

Your case sounds like my husbands. Can I ask what your side effects were? My husband is not the same since taking Venclexta Lacks clear thinking, seems depressed, balance issues etc. It is very effective however for his CLL.

[thb4747 in reply to Dice70]

Hi, I really had only 2 side effects. Serious diarrhoea (no longer an issue) and neutropenia. My neutrophils were as low as 0.3. I had neutropenia twice and had G-CSF injections each time — including while travelling overseas. First time, my dose was reduced to 300mg, then 200mg the second time. No other side effects. Since being on Venetoclax I’ve managed trips to Tanzania/South Africa, Australia (3x), Japan, Kenya/the Netherlands/Germany. Since COVID 4 trips have been cancelled and rescheduled.

As I’ve said before Venetoclax truly is a wonder drug. I wish your husband well.

[mickimauser11]

I was in a threefold trial some were successful With 200mg

[Flute117]

Since my last post, my Cardiologist took me off Verapamil and I am now on a low dose of Propranolol for my aFib. Seems to be working and no interaction with Venclexta - which I started today.

[dvd1955]

Hi Flute. Just saw your post and I'm in the same situation. Been taking verapamil for years. Started obinutuzumab in late August and venetoclax about a month later. Capped the V at 200mg. My GP and cardiologist agreed to just keep me on the verapamil. I think they didn't want to throw in another variable in case I had any adverse effects. Fortunately, the only issue I seem to have with the venetoclax is a little pain in my thumbs.

[Dice70]

My husband started Venclexta ramping up to 400 mg daily on the recommended schedule. He stayed on this dosage until other health issues (balance, memory not as sharp etc) surfaced. We thought these things might be a side effect of the drug so they reduced the dosage to 300 mg a day. He stayed on that dosage for about 6 months when he was then taken off of it for a month after two falls, and high blood sugar. During this time there was not much change noted in his other health concerns so he was put back on Venclexta. He is currently on only 200 mg a day (about 6 months of this dosage.) He remains in remission for the CLL. Other health issues are still a concern. His oncologist wants to keep him on Venclexta because he is responding well to it (CLL wise) with a hard to treat type. In August he will have been on Venclexta for 3 years.

[Hermance]

I have CLL. Many previous treatments. Now I started Venetoclax in March 2021, and had the first vaccine at the same time. During the ramp-up, when I got to 200 mg I had a very serious auto-immune reaction that sent me to the hospital for 3 weeks, with blood transfusions every 2 days. Needless to say, we interrupted the treatment. It was decided that we should not do any more vaccine at the same time as the Rituximab IV's. I re-started Venetoclax very slowly in August 2021. First, 20 mg. Then, 50 mg. That dosage appears to be enough to keep my WBC at a good level and my lymph nodes down. I'm going to stay at 50 mg and I do not want to go any higher.