Finishing 2 years of Rituxan and Venetoclax

[Carolinaj]

Hello everyone,

My 46 yo husband was dx with CLL in 2009. He was treated with the following:

- FCR (4 year remission)

- Imbruvica (worked for 5 years but caused A-fib)

- And since 2020, 6 cycles of Rituxan and 2 years of Venetoclax

CBCs are okay except for Platelets just below normal (around 120-130 K).

Hem is pleased with results and says no BMB is required or checking for MRD-.

If you have received the same treatment, would you share with us what was done at the end to confirm deep remission (if anything), how long you've been in remission and how is your quality of life?

Also, is there a decent chance for this combo to be curative of produce a long lasting (how long?) remission?

TIA

Carolina

[LeoPa]

I see no replies here. From what I know curative is unlikely. How long the remission is likely to be very individual . But other more experienced folks will surely chime in.

[IRN83]

I was diagnosed with CLL 12 years ago. I have had. FCR, BR, Ibrutnib and Venetoclax/Gazyva. I have had to be treated every 2 years. I only got to MRD with V/G and it didn’t last for 2 years. I am on V/G now (2nd time). It took 7 months for the chemo to show any positive results. I was one blood test away from finding a different drug or experimental treatment. Ibrutnib put me in the hospital because of a severe reaction to it. But it saved my life because in one of my many MRIs they discovered I had Kidney cancer.

Bottom line, we are all different, we will respond to the different chemo treatments differently. I am on the bad side of this disease, always fighting it. But I can and do enjoy life.

God bless you on your journey.

[DancinGal]

As others have said, everyone's CLL journey is different. I share my experience here only as an almost 30-yr CLL survivor (aged 69) who has had some similar treatments as your husband:

2006 - FCR, followed by 9-yr remission

2018 - started 6 cycles of obinutuzumab + 2 yrs of venetoclax. (I elected this regimen because I was concerned about the side-effect profile of ibrutinib.)

2019 - remission (uMRD) confirmed by bone marrow biopsy, flow cytometry and FISH analyses within ~6 months of starting V + O treatment. Am still in remission.

My platelet counts have been below normal (~100 - 135) since 2006 and FCR. I expect they will never fully recover but this appears to be a non-issue. (I'm not prone to bruising or excessive bleeding.)

I expect to relapse and need treatment again within a few years, but good options will likely be available when the time comes. If it weren't for my concern about a bad outcome if I catch COVID, I'd have a very good quality of life. (I haven't braved an airport or indoor restaurant since the pandemic.)

CLL treatments are not typically curative, although some long remissions and apparent cures have followed FCR treatment and bone marrow transplants. The latter are not in favor these days because of the associated morbidity/mortality risks and the availability of new treatment options.

I wish you and your husband the best in his CLL journey.

[Korstiaan]

Hi, I was diagnosed with CLL in 2010 (aged 52, I am now 64 years old).

FCR treatment in the first HY of 2011. Good results and life went back to normal. In 2015 CLL returned and I participated in the Murano Study (combi Venetoclax and Rituximab) with very good results, but CLL came back in 2019. I participated in the extended Murano Study with the same combi treatment. But at the end of the two years Venetoclax the lymphocyte count increased. So, it seemed that there is some resistance against Venetoclax.

At the end of the first V/R treatment not only a bloodtest, but also a BMB to test MRD (0,1% CLL). After the second treatment only a bloodtest.

In the meantime quality of life was good (and still is). I had a fulltime job, doing sports and enjoyed life. At this moment I'm waiting for a treatment with Ibutrinib, to start in a few weeks. And I am discussing with my CLL-dr about stemcell transplant in the near future (no decisions made yet).

In my case quality of life is still good, but I realise that this differs from person to person.

I wish you and your husband all the best!