At my last appointment w/CLL specialist, in December, he noted that my CLL appears to be becoming active again and I'll likely need treatment again this year.
Instead of the usual 6-months, he set our next appointment for 3-months, which is coming up this week. So, of course, I've been reading, trying to get prepared.
I watched this interesting video that I found here on HealthUnlocked:
In part of this video, they talked about how unlike frontline (initial) treatments, there are somewhat limited options for Relapse/Refractory CLL (just two classes of drugs BTK and BCL2 inhibitors). They talked about sequencing treatment options, to get the most out of each before having to move on. Wondering if anyone has talked to your doctors about this concept?
Although that video was only three months ago, things change quickly in CLL. It was before the ASH conference and before Zanubrutinib was approved here in the USA.
My doctor talked briefly about different treatment options. That maybe I could go back on venetoclax and obinutuzumab (instead of rituximab) or Acalabrutinib or Zanubrutinib. At that point, my eyes were fully glazed over.
I'm just trying to get ready for my appointment this week, in case its time to decide on a treatment option. I really appreciate any input from all the smart people on here.
Fyi, some info on my CLL:
- diagnosed and treated w/FCR in 2013 (no watch and wait for me!)
- treated again in 2019 with venetoclax+rituximub. I have heart issues, although not Afib, which is why I went w/venetoclax+rituximab in 2019.
- IgVH unmutated, CD38 neg, ZAP70 pos - although I can never keep straight what all those mean, which are good and which are bad.
Thanks,
Greg
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You've found a great video in that post about current treatment options. With respect to your markers, CD38 negative correlates with long watch and wait/remission times, but IGHV unmutated correlates with shorter periods. These are the strong predictors, particularly IGHV mutation status, but past experience is what really counts. ZAP-70 positive also correlates with shorter periods, but is not that reliable a predictor.
With respect to your treatment choices, obinutuzumab is a second generation version of rituximab and is a more effective treatment. You've had a reasonable remission with venetoclax with rituximab and you know how you went with that. Your experience with V+O is likely to be similar, though as you'll read in this forum, it's not unusual to have a strong infusion reaction with your first obinutuzumab infusion, then sail through the rest with no issues. What you'll need to weigh up with your specialist when treatment time finally arrives, is whether your remission time (hopefully 5 or more years by then), makes it worth a similar repeat, or whether it's time to switch to a BTKi in acalabrutinib, where your heart issues will need to be considered. Irrespective, congratulations for doing some preparatory study; you'll be well prepared for a knowledgeable discussion when the time comes for that treatment discussion.
Thanks so much for your reply and the great information, as you give to so many on this site. Definitely things for me to consider w/my specialist.
I thought that was a really helpful video. I never heard of that group before, the CLL Advocates Network (CLLAN). So I wanted to re-post for others to see.
One thing to clarify. I started V + R in 2019 but of course its a two year treatment. I finished it in about July 2021. So that's my biggest concern. I had a good 5+ year remission after FCR, but its only been a little over 1 1/2 years since the end of my V + R treatment. So, I kind of feel, wow, I can't have each remission be shorter and shorter.
Interesting to me that you mentioned Acalabrutinib, not Zanubrutinib. I thought, since the ASH conference, or since the US FDA approved Zanubrutinib for CLL, that Zanubrutinib seems to get all the attention? (I understand, there's been no head to head comparison of the two.)
Both acalabrutinib and zanubrutinib are good second generation options if you opt for BTKi maintenance on the understandable basis of reducing remission times with venetoclax and an anti-CD20 monoclonal antibody. Theoretically acalabrutinib is the cleaner drug off target wise, but you are correct there's been no head to head comparison (and I doubt that there ever will be). There's differences in patient experiences that will probably influence your final choice, plus Beigene's zanubrutinib/Brukinsa is slightly cheaper, as they are trying to build market share.
Neil
Off-target effects of BTKi drugs used to treat CLL vary.
Zanubrutinib would be my treatment of choice in your situation and hopefully you should get many years of good health. It has less off target side effects, especially the cardiac ones but, with more world wide use that view might change.
I am on my 6th treatment currently for CLL. I can say that pirtobrutinib(LOXO 305) was by far the best drug I was on. I took it for 19 cycles before relapsing. I had virtually no side effects. We are all different and my response may be different than yours. I wish you the best. Tony.
Thanks to everyone for your replies! Good news is that I don't need treatment yet.
My WBC and lymphocytes have increased but not enough to need treatment yet. With everyone's help, I was more prepared for detailed discussion w/my hematologist. Now leaning more towards one of the new BTK inhibitors. My hematologist said the choice between acalabrutinib and zanubrutinib often comes down to which one my insurance will pay for. As is often the case in America.
I learned a couple things that might be useful to others:
1/ I knew people with adverse affects could switch from one BTK inhibitor to another, but I wasn't sure about if/when it stops being effective. I confirmed w/my hematologist that if one BTK inhibitor doesn't work or stops being effective, the other BTK inhibitors likely won't work at that point either.
2/ He said they measure the length of time a treatment is effective from when you first start it, not when you finish it. I was concerned that V + R treatment didn't work for me very long, but that was because I was counting from when I completed it in 2021 (not when I started in 2019).
He pointed out that if we go with acalabrutinib or zanubrutinib, nothing precludes me going back on Venetoclax in the future. Hopefully, other options will be available by then (Pirtobrutinib).
Lastly, I also saw a specialist that sees patients with both cardiac and lymphoma issues. As he recommended if I go on any of the BTK inhibitors, I'll wear a Holter heart monitor for several weeks (including the week before). Makes sense to me, rather than relying just on me to notice any issues.
A minor expansion of your point 1 about switching to another BTKi if the one you are on stops working. The first and second generation BTKi drugs bond to the BTK in CLL in effectively a non-reversible, very strong covalent bond. Third generation BTKi drugs bond non-covalently. The way resistance develops differs between the covalent and non-covalent bonding BTKis, so usually you can switch and regain maintenance management of your CLL. Non-covalent bonding BTKi drugs are only available on clinical trials at the moment (March 2023) with pirtobrutinib closest to gaining approval for CLL treatment.
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To continue or not....that is the question
CLL treatment 
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Treatment time, hard choice!
