After my last two CT scans (3 months apart) the oncologist told me the lymph nodes have grown and the dark monster is back.
I was confused because my blood work was well within normal range.
Been taking LOXO 305 for 18 months with virtually no side effects so I am unhappy with this news.
My oncologist said I may be eligible for a CAR-T trial or go on Venetoclax + Rituximab.
Will discuss with Dr Chen next month .
Oh well here we go again.
Thanks
Steve
where in canada ? rituximab and venetoclax is a good one .
Cart T as well if you can get it
Toronto at PMH
What treatment are you on?
my dad had solo venetoclax and had some issues and then had the combo rituximab and venetoclax 2 years and still doing well .
eats a very healthly balanced diet
very pleased with the combo that includes venetoclax ..
Steve - We have some similarities with our CLL journeys. I started Ibrutinib in Oct 2018 and added Venetoclax trial in Aug 21. Finished trial in June 23 with uMRD. Just had CloneSeq on bloods last month and still well below uMRD. Ramp up for Ven is a bit of a commitment with some limited risks, but seems much less than jumping to the CAR-T. Best wishes and thoughts for you.
Tim
Ibrutinib lasted almost 5 years . I’m just wondering if each successive targeted therapy has less endurance than previous therapies?
In my case, the Ibrutinib was still working well and tolerated, but would never get me to uMRD. The chance to get off all meds for a period of time was the key to joining the I+V trial. I think that I will probably be back to Ibrutinib (or similar) when next treatment needs to start - expect it to work again next time but wouldn't guess effectiveness or durability.
since I’m 17p - will have to discuss with my oncologist what the best option is since it will be my third treatment .
Whether V&Z or O versus CAR-T
venetoclax is a game changer
are you in a trial ? who did the clone seq? in canada they don’t really test for uMRD unless you’re in a trial
I was in I+V at MDA - two year trial finished June 2023. CloneSeq was ordered by local oncologist at KU Med.
you’re in the US ? way more restrictive in canada
Yes I’m in a trial at PMH with LOXO-305.
I haven’t had the cloneseq that you mentioned
i think the Rituximab and V is a good choice you can discuss.
The only thing about the trial is having to go for CT scans every 3 months.
I’m on a trial with Pitrobrutinib and also have the scans every three months. Not my favorite
your experience of pirtobrutinib is typical - short duration remission. It’s a useful bridging therapy to be able to get to transplant or CAR-T for those that have exhausted all else and definitely preferable to Idelasilib.
hope that cart T becomes standard treatment . really promising
We just went for an appointment at PMH with my husbands' oncologist and he told us that they are starting a new trial with a BTk degrader. I don't know any other details. My husband is taking zanubrutinib right now.
Ileana
Good to hear - I’m sure Dr Chen Will mention any new promising trials
Hi Ileana, I just read this article online which was quite encouraging regarding BTK Degraders.
Further, one of the patients who had developed treatment resistance to pirtobrutinib after 2 years of treatment as well as other therapies experienced symptom and quality-of-life improvements after receiving NX-2127
The Pirtobrutinib may be effective longer as an initial treatment
have you seen any reports of single agent Pirtobrutinib in treatment naive patients?
I’m not sure. I’ve been on it since 11/1/2022 and my counts are normal now except for my platelets (145) and my immunoglobulins.
Venetoclax is doing wonders for me too. It looks like patients will be able to take it at least two times. Sonrotoclax should be approved in 2025. A recent paper I read said it will be effective even if you develop resistance to Venetoclax. There are also multiple degraders and CAR-T therapies in trials. We all have some good options.
my CBC stayed in normal range for about a year after I had started relapsing on Ibrutinib. Lymphocytes crept up, total ALC and % of lymphocytes increased even though my overall WBC didn’t move too much—my neutrophils had been decreasing slightly. What you’re describing isn’t abnormal
My CBC is well within normal range. If I didn’t have the CT scan to show lymph nodes growing I wouldn’t have known.
The question I want to ask the oncologist is what classifies as a relapse?
BTK mutation occurred before my actual relapse by CBC. I officially relapsed when the ALC showed a clear upward trend. Your relapse appears preferential to the nodes so any increase above the normal 10-12 mm should be considered progressive disease. Same with spleen increase beyond upper size limits
Yes happened to me. After being clear for 6 years now on Venetoclax and Rituximab. As you say: here we go again. But if it saves your life..........
Sorry to hear about your journey with Pirtobrutinib. I am on the same trial as you at PMH and at first was randomized to Arm 2 which was Idelalisib + Rituximab. That only lasted approx. 6 months before severe complications from the Idelalisib ended me up in hospital for 10 days. The weird thing was the drug was actually controlling my CLL. At that time before I was transferred over to Pirtobrutinib they said I have options, V & R, or a new trial with the degrader and Cart-T. We decided to stick with the Pirto and keep my options open if and when Pirto stopped working. I will be following what your decisions will be. Good luck, Jack
rcusher,
As the pirto usually is used as a bridge to the other treatments you listed, will you wait for relapse or if you hit a low level of disease go with one of the other options?
Jeff
As long as Pirto is working I will stay with it.
Hey Jack, I have an appt at PMH in July at which time there will be a discussion about which route to take. I have read some good things about the BTK degrader so we’ll see.
Hope your doing well on the LOXO-305
I am down at PMH on July 17th for my monthly checkup and if things are still going well I will be onto every 3 months🤞. So far so good but it took me about 4 months after the Idelalisib complications to finally be clear enough to go on Pirto. I have also heard good things about the degrader but I'm still not there for the Cart-t as of yet but will decide when the need arises. I am leaning toward the V & R next though.
How is "remission" defined for CLL?
Update on my CLL after 12 months 
Finishing line for Pirtobrutinib (Loxo) & Venetoclax combination trial.
Imbrutinib and AFIB
