V&R Treatment

[unairdefamille]

I live in Canada and I am on my 7 month's treatment. Last week, I was told by my oncologist that my treatment ended. I was overjoyed. But yesterday he told me it was a misunderstanding from him. the Ritoximab infusions are over, but I have to continue with Venetoclax 4 pills every day until October 2025.! I feel so depressed about it, I could hardly sleep last night 🙃. I never knew it could be so long. I need to hear from people on this forum why is it so long to finish this treatment, or any reassuring experiences with this treatment. Thank you 🙏🏼💖

[AussieNeil Partner Administrator]

I know how you feel, because I too grew weary of the additional months of venetoclax and acalabrutinib in my case, after finishing my obinutuzumab infusions. The older 'chemo' treatments like BR and FCR do have the advantage of being done in 6 cycles, than the 14 cycles (13 months) of my combination venetoclax based treatment or similar. The big advantage with the newer treatments, are that you can repeat them, without worring about an increased risk of secondary blood cancers or the much higher risk of harder to treat 17p del and TP53 mutated CLL.

Neil

[Sagarcanada in reply to AussieNeil]

Hello AussieNeil,

I want to be clear about the impact of the marker 17p deletion and TP53 mutation because you are a very experienced person and I have asked you a lot of questions regarding CLL. As you mentioned, are these two markers difficult to treat in conjunction (17p del and TP53) or harder alone? I'm inquiring because my wife also has a TP53 mutation. I wish you good luck with your medication.

[AussieNeil Partner Administrator in reply to Sagarcanada]

TP53 is located on the petite arm of chromosome 17 (17p). So when tested as having 17p del, it's likely that also missing is all or part of TP53. We normally have two copies of TP53, inheriting one from each of our parents. What matters when we only have access to the older chemoimmunotherapy treatments, is whether there is some functional TP53 remaining. (The patient might respond to chemoimmunotherapy, but may be better off having a bone marrow transplant if access to a clinical trial is not possible). This is why it is so very important to have FISH testing (to check for 17p del) and also specifically functional TP53. Where it is possible to be offered chemoimmunotherapy treatment (e.g. BR, FCR), when targeted therapies are available for when these won't work, we want to be certain to be treated with a targeted therapy.

With TP53 mutated CLL, your wife definitely meets the criteria in Canada to be treated with a targeted therapy, which thankfully are finally replacing the older chemoimmunotherapy treatments in Canada - though funding can rely on the province of residence. Which targeted therapy option provides the best outcome for non functional or missing TP53 is still being determined from the long term follow-up of clinical trials using fixed term combination targeted therapy vs maintenance BTKi therapy. Other factors such as IGHV mutation status, other FISH deletions (particularly 11q del), etc., also have an influence.

Neil

[Sagarcanada in reply to AussieNeil]

Dear AussieNeil,

Thank you very much for your great answer. God bless you!

[Justasheet1]

Worry is part of the game with CLL. You worry about when to start treatment. Then you worry (in your case) why treatment is so long. Then you start all over again.

I only worry now about treatment resistance.

Unless the Ven is causing you other medical issues just be thankful that it’s utterly destroying the cancer that is the true villain.

Be well and enjoy life.

Jeff

[Mog811]

One week ago I finished my V-clax. All turned out good and will check back in with my doctor in September. Your day will come when there are no more pills but know each day is a step closer to recovery. Each day you are taking a step that gives you the opportunity to love others. Your daily burden allows you the freedom to be with your friends and family. Take those pills, look around and see your blessings. Always take that next step. 😉

[Schubert1870]

Hi unairdefamille,

I have only had monotherapy Venetoclax, and remember when I started, the thought of taking four pills a day seemed like a chore. After two months, I settled into the routine, taking them with my morning meal, and it wasn't that bad. I told myself that each day I was one step closer to the 2 year mark. I loved the convenience of taking them at home. I hope I will be able to repeat the treatment, but with Obinutuzumab.

Schubert

[Graham2222]

Hi. Your oncologist shouldn’t really make that kind of error. The protocol is clear that Venetoclax continues for most people for two years in total, after Rituximab, ie another eighteen months. If it becomes problematic, the dose can be reduced or paused temporarily or permanently.

But the main thing is it works, and is quashing the evil CLL in your body with every dose.

Chin up and try to be positive - it helps.

[Birch2019 in reply to Graham2222]

I just finished Obinutuzamab/ Venetoclax protocol. I finished in just over a year. I responded really well, in remission since December. Now the anxiety is every three months for labs.

[Pacificview in reply to Birch2019]

Enjoy your time off treatment and make it a practice to not worry about if and when it returns. The point of a fixed duration treatment is to treat and then have a long break.

Worrying about if and whens is useless energy spent which will deminish the quality of your life. Isn't the break the reason you chose that treatment after all.

Put CLL on ignore and all the best of health to you. I finished O and V last month. I am practicing what I preach.

John

[roszika]

Hang in there. I live in aus and was on V for 2 years april 19 to march 2021 and rituxa from may 2019 to nov 2019- You will be surprised how time flies and I was on this regimen when here in Victoria we were under the strictest covid lockdown in the world so that was really even harder going because we could not do our normal daily things and get distracted from the dosage regimen so just take it in your stride and know that you have a brilliant chance of being in remission for a very long time- I still am

[Floxxy]

I'm on the same regime. I'm 14 months into a 24 month regime. I'm happy to be on it as it is keeping me well. You will get through it. X

[unairdefamille]

Dear, dear Friends, thank you so much for your reassuring and empowering words. BLESSINGS to you all, onwards. 🙏🏼💖🍀🌟🤞👏

[soapstone]

in 2018 I was on the same- 6 once a month R and 2 years on V - I did not have any serious problems except I could only take 3 pills per day - I have been in remission since August 2020 - good luck

[unairdefamille]

WOW, may you continue to be pill-free 🙏🏼🕊. Does it makes a noticeble difference to be in remission? i know it may sound like a silly question, but I'd like to be able to visualize... BIG THANKS 😊

[Ladylin151]

I am the wife. I am not the patient. I am not a doctor. But omg, remission has made a BIG difference! Hubby finished treatment last June and retired soon after. He doesn't take daily naps anymore. He hasn't had any odd infections this year. ( One sinus/ear infection round). No pneumonia! He is more relaxed and happy than all of watch and wait. He has lost weight in a way that looks very healthy ( IYKYK) is getting tan and more fit and right now, is lining up fishing jigs. I see smile lines around his eyes. Most of this was never measured by his doctor, it will not be in his chart.... But the difference is overwhelming.

[narl]

I am taking Venetoclax alone and it's a two-year treatment

[SofiaDeo]

I took venetoclax for two years and didn't get to a "complete" remission. i had a partial, with a level of about 12 CLL cells per million.

[Marisa]

I don’t know why you are depressed. I am so thankful for the V and R treatment. I take my Venetoclax tablets in the morning with other tablets. I finish the two year regime at the end of May/June. It is funded for this length of time. Having spoken to the CNS nurse, she said I should expect at least another 10 years before receiving treatment. I really have no side effects with the Venetoclax and am glad that the tablets are doing their job. I know that the Lord Jesus been looking after me and that he knows when my time is up. And it isn’t yet, because he has things in store for me to do.