Venetoclax

[JoeMcDote]

Hi all

Well we finally got to see a specialist. They did a bone marrow biopsy which showed 50% CLL infiltration on top of the pancytopenia.

They have suggested treatment with Venetoclax only which they have said may reduce the frequency of transfusions which is currently weekly.

I have only ever heard of V being used as a combination therapy. Does anyone have any experience of using it on its own and what we can expect it to do.

Thank you again everyone for all of your help. So glad you encouraged us to see a specialist.

🙂

[Jm954 Administrator]

Although Venetoclax is mostly used in combination with other drugs it is approved as a mono therapy in the UK and often prescribed. The addition of a monoclonal is sometimes considered too risky for some patients where the risks outweigh the potential benefits.

You should have the usual ramp up of dosage and/or doctor will have done a risk assessment of the likelyhood that you will develop tumour lysis syndrome.

Don't fret, it's fine

Jackie

[texigal]

Hi Joe… I am 85, diagnosed with CLL/SLL 2003 when lymphoma removed from Cervical corpus( C4)/ radiation then WW till 2018. Started Venetoclax mono therapy. I have been MRD and stable, but seems to be a sub clone now raising its head. May need to add one of the - brutinibs now. Bottom line = I’ve done well on monotherapy for 4 yrs.

[thb4747]

Hi Joe,

I started a clinical trial of Venetoclax monotherapy in April 2018. I was in remission by November 2018 even though my dosage had been reduced to 200mg by then. I, still taking 200mg daily and going well. I’m 76.

Cheers,

[Schubert1870]

Hi Joe,

I was put on monotherapy Venetoclax and did very well with it for exactly 2 years, with minimal residual disease. At the time, my CLL specialist who has passed away since recommended monotherapy, but I'll never know if he didn't want to add the O since it was the height of Covid in 2020. I would do it all over again if need be. Best to you.

[DoNorth]

I’ve been on it for 5 years as a single agent. Never did the Obintuzimab part because I transitioned from Ibrutinib to V and my progression wasn’t too bad. Other than the occasional nausea when I don’t eat enough fat when taking the pills, it’s been uneventful. Going on 12 years between the Ibrutinib and now the Venetoclax

[Cllsller]

I have been on Venetoclax for a year with few issues. Starting the treatment takes a month and I had to stay closer to my onc/hem for a few weeks but it was no big deal. I had headaches and nausea in the beginning but both have subsided. I highly recommend this drug after having taken Imbruvica and Acalabrutinib. Wishing you the best.

Dorothy Star

[Villager]

Transitioned from Imbruvica (after eight years) to Venclaxta last January. CBC every six weeks to monitor counts. All is well. Best of luck!

[Doggoneit101]

I finished Venteclax alone about 2 years ago. I transitioned from Ibrutinib to Venteclax due to chest pains and a family history of heart problems. I'm still in a "partial" remission with minimal residual disease. That means I get a drug "holiday" until I need treatment again. Venteclax was a miracle drug for me! Hematologist oncologist said when I need treatment again Venteclax would be it. The worst part for me was the frequency of visits, fluids and blood checks during ramp up. I understood why it was being done and better than being hospitalized to have it done. I was concerned about tumor lysis syndrome but no issues for me. I did get the itchies from the allopurinol during ramp up. I took my Venteclax every night after dinner. But other than that nothing negative to say about Venteclax. Staying hydrated is the key!

[flippingnora1]

I have just started Venetoclax, so will keep you posted.