anybody achieved good blood results with venclexta in 6 months and stopped treatment?

[Belkin123]

I was on acalabrutinib for 1,5 years, then dr switched me on venclexta. My blood results are completely normal for 3 months and I want to stop treatmentbecause of side effects. My next appointment with dr in august , I hope he will take me off the drug. Any thoughts? Thanks.

[rafew]

I was on venetclox for 19 months and was MRD-. We stopped treatment as I was in remission [scheduled for 24 months] but I relapsed 9 months later. Now on Acalabruitnib. From what I have read, the longer you stay on Venetclox, the greater the chance for deep remission. But who knows, we're all different. Best wishes.

[Belkin123 in reply to rafew]

thanks.

[SofiaDeo]

Perhaps see if your dose can be decreased instead of stopped, so you can continue to clear out any CLL in nodes and marrow. One person here told me that their noted CLL specialist told them, about half his venetoclax patients were on reduced dose.

[Belkin123]

thank you , Sofia. It makes sense.

[Joffre1]

Hi Belkin123 I am keen to follow.

I started on Acalabrutinib in Decembef 2022.

Since that time my ALC numbers have dropped from 57 to 5.69 this month. My Hemo thinks will be in remission by next visit.WOW.

I had only one prior treatment in 2019 ..one treatment BR which was a disaster. But worked up until Xmas.

Would love to go off Alcalabrutinib too

Regards

JOFFRE1

[Belkin123 in reply to Joffre1]

good luck on your journey! 👍

[mush56]

hi I’m to start ventaclax in the next 2 weeks , just waiting to see as my heart is enlarged . I tried Acalabrutanib but had to stop due to excruciating joint pain . What side effects have you had with ventaclax please .

[roszika]

To achieve a good result and be MRD negative for statistically 3 to 5 years as told to me by the Head of Lymphoma at one of our major hospitals in Melbourne, you need to stay on Veneteclax 400mg for 2 years. I was already MRD negative after 5 months on Veneteclax by Nov 2019, having started on the April of 2019 but I persisted for 2 years, stopping end March 2021 and am still in remission now in June 2023 so stick with it. I am 76 and live in Aus. I suffered nausea every single day of those 2 years but I stuck to the regime and am so glad I listened to my specialist who is tops.

\

[LeoPa in reply to roszika]

How do they adjust for weight? You mean it's 400 mg for a 130 kg male and a 59 kilo female as well?

[Grammy3_USA in reply to LeoPa]

yes that was my question too, but apparently it is standard dose for everyone, my specialist said not to feel bad when they made me reduce down to 200mg as he said some people can’t even take 100mg I am now trying to dose back up to 300mg this week as I want to give it all I can since my SLL/CLL is atypical and aggressive apparently.

[difor29 in reply to roszika]

I have Extra Nodal Marginal Zone Lymphoma and I’m on a clinical trial with Sloan Kettering. I started my journey Nov. 2021 with Rituxan and Venetoclax. Finished the Rituxan back in October. Currently still on 800mg of Venetoclax until this November. Never had any problems whatsoever, thankfully! Hoping to get a good remission

[Judyanne in reply to difor29]

Hope you achieve a great remission. It will be interesting to see how venetoclax works in extranodal marginal zone. There are 4 marginal zone sites I am aware of. If not on them and are interested, pm me. I also have extranodal marginal zone and am being treated with zanubrutinib.

[thb4747]

Hi,

I’m 2 months in to year 6 of taking Venetoclax. I’m on an extended clinical trial. I did the ramp up on April 2018 and was in clinical remission by November of 2018. Since then I’ve only been taking 200mg daily instead of 400.

At the beginning I had serious diarrhoea plus neutrophils consistently hovering between 0.3 and 0.5. Since reducing the dose I’ve stabilised and my numbers last month were HGB 134 (we keep an eye on that because I’ve had AIHA 3 times), WBC 2.4, Platelets 118, Neuts 1.3, ALC 0.6.

Ironically, given how I started, I now take daily laxatives because Venetoclax has now led to constipation! I also don’t eat eggs any more because they make me nauseous. I’ve had neither cold nor flu in the past 5 years, though I did get Covid. I’m currently on Johannesburg waiting for a flight to Australia then on to New Zealand. My first overseas trip since December 2019!

I wish you well.

[Belkin123 in reply to thb4747]

great! Have a safe trip! You deserved it!

[Cottager1989]

I’m on Ventoclax 400 for a year, now in month three…constipation and bad body aches especially late in days. Seriously affecting my sex life with my lovely man…Tylenol not much help, any thoughts?

[Belkin123]

A few pieces of dry apricots help me with constipation. Good luck with your man.👄

[HopeME]

Hi Belkin123:

From the responses so far you can see that the problem with Venetoclax is the medical establishment is uncertain exactly what the best length of treatment is for each patient. I suspect the answer is it varies by patient but the doctors have yet to determine exactly why that is the case. As some have noted, if a patient stops the drug too soon a deep remission may not be achieved. On the other hand, if a patient stays on the drug too long the disease may develop resistance to the drug. Perhaps the answer is to take 400mg for a year or two and then cut back to a lower long-term maintenance dose? Complicating the length of treatment/dose question is some patients experience side effects.

In my case I’ve been on the drug for six months with no side effects to speak of. My doctor plans to test me for disease burden at twelve months. Based upon my results he will make a recommendation to either continue for another year or stop completely. At least that is what his thinking was before I started the protocol.

Those of us on the drug are contributing to the long term research and in five to ten years the doctors will have more statistical evidence to determine when and for how long to use this drug. I wish more was known now but unfortunately that information simply isn’t available.

Best,

Mark

[Belkin123 in reply to HopeME]

thank you ,Mark.I guess the key word is protocol.

[roszika in reply to HopeME]

Yes I agree I think it is a bit of a trial and error situation with Veneteclax. Different people, different doses and different side effects. Let's face it there is still not enough post data to come to any conclusion of the best dose regime and treatment with Veneteclax . In 10 years time they will have more of an idea but I suppose by then there will be many more drugs on the market even better than V. Time will tell but we can only go with what we have at this present time- the story of drug development literally. For years as a pharmacist I would get the monthly AJP, the Australian Pharmaceutical Journal. In every edition for years there was always an editorial. Usually, it was discussing some drug that was the wonder drug years before but after years many bad side effects were eventually discovered. This story repeated itself in that journal with many different drugs over the years so the conclusion as a professional we always made was use what you have got at the time and hope that it is a better drug.

[Healmenow]

I’ve been on Venclexta for months, recently going to 400 mg with no side effects. Last blood panel showed platelets were low, but my fantastic doctor indicated “not to worry.” All other counts are good. I’ve been pleased with the drug. I hope you have a positive response, as well.

[Doggoneit101]

I would ask my doctor about possibly reducing dose before I just got off. I am aware of other's reducing doses to help with quality of life issues. What side effects are you having a hard time with? I was on Venteclax for 2 years and I didn't have any issues. Been in a "partial" remission for 1 1/2 years. Everyone does react differently to things.

[Belkin123 in reply to Doggoneit101]

thank you all for the discussion.