Remission

[Bobby9toes]

Back in November I noticed a swelling under my arm. My doctor set me up with ultrasounds and found it was swollen lymph nodes. After the surgery in December to remove the largest one, I was told I had SLL. My world turned upside down. I had a PET scan in January and I lit up like a Christmas tree. The oncologist put me on 2 Acalabrutinib and one Allopurinol a day. Long story short, I had a bad reaction to the allopurinol. My doctor put me on only one Acalabrutinib a day then. I’ve done great since. I just had my second PET scan and the results showed that I am in remission! As you can imagine I am very happy with the results. My doctor told me in order to keep it from coming back, I will need to continue taking the Acalabrutinib for the rest of my life. Has anyone else been told this after going into remission.

[gardening-girl]

Congratulations on your remission! The acalabrutinib that you are on is one of several BTK inhibitors (BTKi), all of which are usually taken continuously until relapse or until side effects require switching medication. I've been taking the BTKi ibrutinib continuously since 2015.

[Artlover1908]

I was told I'd be on acalabrutinib for as long as it worked. My consultant said the average was 4 years. I've been on it since Nov 2022. Its working fine, and I hope it continues. I think some people have been on longer than the 4 years, so I'm keeping my fingers crossed.

[Skyshark in reply to Artlover1908]

Your consultant is being very conservative but it's best not to raise expectations too high.

The 4-year PFS for Acalabrutinib was about 73% for unmutated IgHV with TP53/del(17p), compared to about 78% for the rest including mutated IgHV with Tp53/del(17p). At 72 months the overall PFS is 62%. unmutated IgHV it's 60% and for TP53/del(17p) 56%. Both of those results are skewed by including the "does worse" unmutated IgHV with TP53/del(17p) with a "does better" cohort. Best estimate at 72 months is that unmutated IgHV with TP53/del(17p) are either at median or very close.

ashpublications.org/blood/a...

For most people outside the "does worst" group an 8 year median is a reasonable expectation. Unfortunately half the people don't reach median.

[Bobby9toes in reply to Skyshark]

Thank you for your reply. I don’t understand all the numbers, etc you mentioned. Do these numbers relate to CLL as I have SLL which only involves my nodes.

[Skyshark in reply to Bobby9toes]

That's a very good question.

There is no difference in treatment.

I haven't seen a trial report that made a distinction. There is often a hazard ratio associated with "lumpy disease" for lymph nodes >5cm or >10cm.

[Bobby9toes in reply to Skyshark]

Never heard of it referred to as “lumpy disease”, but it makes sense 😁.

[Analeese in reply to Skyshark]

My doctor calls mine bulky

[Bobby9toes in reply to Artlover1908]

Thank you for your reply. The doctor I have been seeing for the last couple of months while my regular one has been on maternity leave didn’t mention that to me. I’ll be sure to ask my regular one next month when she returns about the expected timeline for me.

[SofiaDeo in reply to Bobby9toes]

With CLL/SLL being so heterogenous one doesn't really have an "expected timeline." The docs can speak to older statistics, and early statistics for the newer targeted agents, but these speak for how large numbers of people do. When it comes to an individual, it's a crapshoot. As gardening-girl wrote, for someone like her experiencing years and years of treatment with the same agent, there are others who relapse within a year. There's no way to know for sure, our treatments are not like having a knee replacement, where things generally have a predictable outcome with only rare exceptions.

The good thing about this, is that regardless of "how people with your markers/disease presentation" have progressed in the past, means you may not necessarily have the same outcome. Back in 2011, I was expected to die within a few years without a bone marrow transplant. I've well exceeded the "expected life" of someone with my markers.

I do think people on this forum will overall have "better" outcomes than the group of patients overall. We are learning about how to maintain optimum health, learning when to see a doc urgently & when not to, etc etc. Patients who are involved in their healthcare generally have better outcomes, regardless of disease state.

So you have to take any "numbers" with a grain of salt IMO. Especially with the rarer subset SLL presentation, no one can say for sure about how the disease will progress, and at what rate, I don't think.

[CLLCalifornia-USA]

I’ve been on Ibrutinib several years and don’t mind taking it for as long as it works. If it is a lifetime of feeling good and doing the things I enjoy, I’m ok with it. Sally

[Bobby9toes in reply to CLLCalifornia-USA]

Me too. Jan

[spi3]

My hubby is on venetoclax and acalabrutinib and he has Zero CLL in his blood and a little in his bone marrow- he is 17p/TP53 depleted and the CLL expert at Dana-Farber wants him to stay on it longer because of the high risk for this type of CLL. Mu hubby is strong and active too.