Worried!!

[Abc123qaz]

Has anyone been on Venetoclax and Rituximab? I am starting treatment in a few weeks and worried about side effects. I had to come off Ibrutinib after just 7 weeks. Not feeling too bad at the moment but could do with a bit more energy 😊

[lankisterguy Volunteer]

Hi Abc123qaz,

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My reply to a similar question 3 days ago might be useful as an answer to your query:

healthunlocked.com/cllsuppo...

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The short version is that we cannot forecast who will have side effects from a specific treatment, but the non-chemo drugs you mention are usually mild and reversible.

So if you are in the ~20% that have a side effect, it will likely be mild and tolerable and should decline over time. If you are in the ~5% that have stronger intolerable side effects, then stopping the drug will often resolve the side effect quickly.

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Len

[Abc123qaz in reply to lankisterguy]

Thanks again lankisterguy for your helpful reply. The thing that’s worrying me most is that I might loose my independence if I feel worse than I do now . But if I have an improvement in my CLL with treatment I’ll be very happy.

[PlanetaryKim]

I haven't had the Rituximab (except for one cycle 3 years ago). But I started venetoclax 4 months ago and have not had any significant problems either during ramp-up or now that I'm on full dose (which for me is just 3 pills). I had some digestive issues (bloating, occasional diarrhea), mostly under control now. Good luck to you!

[Abc123qaz in reply to PlanetaryKim]

Thank you, that’s reassuring

[Rafe]

Hi Abc123qaz - I'm currently on that same protocol. I started with the Venetclax ramp-up late August. Due to a heavy tumor load, I did experience some TLS, but the hospital nurses were great and pushed the fluids so there was minimal effect. I've had some bowel issues - nothing to severe. Fatigue is an ongoing issue - some days are rougher than others, but you do what you can. For the Rituxan, I've had other treatments that included Rituxan so I did not have a reaction to it. But the first infusion of Rituxan can have reactions, and the nurses will jump on it quickly. You may want to talk to them about that. I was lucky that I was able to change from Rituxan infusion to Rituxan Hycela [injection]. So instead of a 3 hour infusion, it's a 10 minute shot. Hope this helps. Best wishes on this treatment.

[Zia2 in reply to Rafe]

Did you spend the night in the hospital the first night of each ramp-up?

[Rafe in reply to Zia2]

A little more than that. I was in-patient for 3-4 nights each week of the 4-week ramp-up due to TLS and elevated Potassium levels.

[Zia2 in reply to Rafe]

Sorry to hear that! Good to hear they took care of you!

[Abc123qaz in reply to Rafe]

Thank you Rafe 🙏

[Korstiaan]

Hi Abc123qaz, I'm on this combination therapy for the second time. I am participant in the Murano Study. First therapy started in August 2015. The second one started in September 2019 and is still running. In both cases I had no side effects at all. A few weeks ago my doctor told me that in my blood there are no CLL-cells found anymore. So, he called it a 'deep remission' (also based on the CT-scan).

I wish you the same results on your treatment!

Korstiaan

[Abc123qaz in reply to Korstiaan]

That’s wonderful news for you, long, long may it last . It gives me great hope. 🙏

[Rafe in reply to Korstiaan]

So you relapsed after the first time through VR?

[Korstiaan in reply to Rafe]

That is right. Diagnosed in 2010. Treatment (FCR) in 2011. Relapse in 2015 and relapse in 2019.

[skykomish]

I was treated with venetoclax and obinituzumab, another anti-CD20 antibody similar to rituximab. I had no side effects, other than an infusion reaction to my first infusion, which was manageable and was not repeated. Soon after I started therapy, I felt fantastic. Here's wishing you similar good success!

[Abc123qaz in reply to skykomish]

I had 6 months treatment with Obinutuzumab and chlorambisil 11/17. Felt normal and was in remission until lumps appeared on left side of neck and under arm in 9/19. Feb 20 started Ibrutinib, lumps almost immediately disappeared but my existing A-fib came back along with chest pain.

Now I’m waiting for 6 weeks until Ibrutinib has left my system before starting new treatment. 🙏

[t2aa]

Good luck to you. I hope it works as well for you as it has for me!

I remember being terrified to start treatment. After all, I was not as bad as some folks on here, but my quality of life was fairly nonexistent with the anemia and fatigue.

I had dozens of huge painful nodes when I started the Rituximab. The first infusion went really slow as I was having some dizziness and blood pressure drops. They just slowed the process down and all was good. After the next successful infusion, they switched to injections which were way easier on me. I had no side effects from those.

Then I started the ramp up with Venetoclax.

The only side effect I have had is the nausea. However, I reduced down to 300mg and take it with my evening meal, and drink lots of water. That usually mitigates the nausea. However, about once a week I get a surprise visit from the nausea demon. Sometimes in the middle of the night or early morning. Not fun!

But what is fun is that I am now in remission with no detectable CLL cells in my blood. I’ll take that all day long!

I am hope to finish with Venetoclax in September if all tests remain clear. I can’t even explain how much better I feel now. CLL symptoms are a weird thing. They creep up so slow, you don’t realize how much they are effectively taking away your quality of life until you are a ghost of who you were. Well, the ghost is gone and I am back! It is such a beautiful thing.

Thank goodness for science!

I have to say this protocol was the best decision I made. I do hope your results are as good as mine.

Looking back, I can’t imagine why I was so terrified!

[Abc123qaz in reply to t2aa]

Thank you t2aa, so pleased the treatment worked so wonderfully well for you and long may it last.

You have reassured me now. 🙏

[Fowey2009]

Hello

Good luck with your treatment.

My husband had 6 x monthly rituximab infusions alongside venetoclax. He has been on V since last September with no side effects.

I described the weekly build up of V on this site so if you click on my profile you will see all my posts. Hope they help.

He is doing really well on the full dose of V.

Best wishes

Beryl

[Abc123qaz in reply to Fowey2009]

Thank you Beryl 🙏

[roszika]

Hi I was on ramp up last year in April on veneteclax over the 5 weeks and on the sixth week started the 6 monthly rituximab infusions. So by 18 November it was all over and by then I was in deep remission. I had not been on Ibrutinib like you beforehand but had not had a good response with chemo at which stage had the genes test which showed TP53 deletion hence the V and R. I have not really had any dramatic side effects. I do not have any other chronic conditions except for CLL so may be that is why I responded so well. I wish you the same luck-cheers

[skunkbay53]

Ask to have the first Rituxan infusion split into 2 days. That really helped my husband

[Smakwater]

Abc123qaz,

I was treated with obinutuzumab (CD20 MCA) and venetoclax in 2018 - 2019 in a trial. My side affects were tolerable, and also to say less adverse than the CLL progression influences. I experienced improvements in quality of life that weighed over the unpleasantness of the treatment. I was unaware of any in my trial group that experienced what would be considered an extreme adversity.

As Lankisterguy stated, "we cannot forecast who will have side effects from a specific treatment". There are many things that can influence individual response to a given therapy, however, data shows that venetoclax in combination with a CD20 monoclonal antibody such as Retuximab to be highly tolerable, efficacious, and safe.

It would be reassuring if your oncologist is involved in research, or has experience with the recommended therapy, however, there are established protocols for monitoring this treatment which have a high rate of success.

Just curious, was there any discussion for obinutuzumab plus venetoclax rather than retuximab plus venetoclax? R + V is an approved relapse/refractory therapy, and I see you stated just seven weeks on ibrutinib. Are you actually relapse refractory, or did you express a intolerable response?. O + V is approved in front line CLL, and there is much published data that supports positive responses and observations regarding adverse events.

In addition, I believe that acalabrutinib may be available in the event that you experienced a tolerance issue. So much of this depends on your oncologist and your actual individual clinical measures, however, be encouraged to pursue the discussion and self advocate.

JM

[Lisa-1959]

I had side effects from the Ibrutinib that my oncologist had never seen before, so after ~6 weeks, she discontinued that treatment. I was off any kind of treatment for 3 months, and then I started the Venetoclax ramp up in late January 2019. Once I reached 400 mg, I started a monthly infusion of Rituxin for 6 months.

Overall the Venetoclax has been very kind to me. I do have some joint/muscle stiffness I didn't have prior to taking the med, but that is the main issue I have dealt with. My energy level is better because I am no longer anemic like I was prior to starting treatment.

My first Rituxin infusion was interesting...I broke out in hives, so I got a double dose of benadryl which settled things down. Thankfully I didn't have problems with any of the subsequent infusions.

For me, the Venetoclax/Rituxin has worked great. I go back to MD Anderson the end of July...praying the testing shows no CLL at all!

[Abc123qaz in reply to Lisa-1959]

That sounds wonderful!! Keep in touch and I’ll let you know if it works as well for me.

[Canuck901]

Any updates on your treatment ?

[Abc123qaz in reply to Canuck901]

Hi, sorry for not replying sooner!! Yes, everything going really well. I’m having my 3rd infusion as we speak and take 400ml of V daily. Bloods very good and lots of energy. So fingers crossed this is the way forward 🙏