i am a relapsed CLL patient , just diagnosed , live in India, had chemo therapy in 2018 with Bendamustine and ritixamab of 6 cycles. . what are the criteria for staring treatment ?
is it good to start at an early stage of relapse of CLL ?
Is oral medication good as i am aged 80 years. Please help and advise ?
Hi Venk,
This pinned post includes references to CLL management guidelines, which include the triggers for starting retreatment. They are the same as for your first treatment.
BTKi maintenance therapies are generally well tolerated by older folk and certainly easier than repeating BR, which is also unlikely to work as well as it did the first time. There's a generic version of ibrutinib available in India, but the second generation BTKi drugs acalabrutinib and zanubrutinib, are much better tolerated.
Neil
Thank you very much. I am bit scared of the side effects.
In India Acalabrutinib is being manufactured
and it is indeed expensive.
My Doctor told me that we have to continue taking this whole life.
Can we give break after 2 years and restart?
Your doctor is correct about taking a BTKi drug for the rest of your life. BTKi drugs work fairly gently and slowly, so only about 10% get their CLL down to minimal residual disease after 4 years. Some can take a break, while others may be able to keep their CLL under control with a lower dose, such as one tablet a day.
Neil
I started Acalabrutinib in September.
I am already taking Dasatinib since 2018 for CML, I have both.
Diagnosed in 2014.
I’m soon 71.
For me the first or perhaps the second month (or both) were kind of difficult.
My numbers, however, were quite high and became 17p tp53 (or whatever that is — poor prognosis).
I almost thought I would not take so much tiredness and weakness. I also had some headache issues during that first or second month on Acalabrutinib. No diarrhea or anything like that. Maybe some loose bowel, but nothing that made me jump to the bathroom and IF it was the acalabrutinib, it did not last long at all.
Those side effects have very much gone. No headache; not as much tired and weak as my numbers are finally going down.
I am not knowledgeable, but trust my dr chose the best route. In my own thinking, I am not convinced any other drug would have been any better experience.
For me, getting out of bed is the hardest thing.
I read that we sleep longer but do not wake rested — so that is likely why I keep wanting to go back to sleep or just in and out. 
Wishing you the best,
Ted
You've not indicated what makes you think that you might need therapy for your CLL again anytime soon but up to date advice appeared in a paper published last year which was shared in this post: healthunlocked.com/cllsuppo...
As far as the timing of any next treatment is concerned, the review article referenced in that post says:
"Recognition of RR CLL does not necessitate immediate change or initiation of the next therapy. Broadly, criteria-based indications to treat RR CLL should align with iwCLL 2018 treatment indications [12] per TN CLL, however, maintenance of patient well-being and function is the ultimate goal and this should not be compromised by deferral of therapy awaiting formal iwCLL criteria to be met. Upon relapse, it is important to have pre-emptive discussions with patients regarding the perceived timing of further therapy, establish future treatment goals, and consider the frequency of interim clinical and hematologic monitoring." (my emphasis)
It also provides the following information for those who've previously received treatment with chemoimmunotherapy:
"Current therapeutic strategies for relapsed/refractory CLL
We now see patients requiring second or further therapies following prior CIT or novel therapies or both. We do not recommend repeat use of CIT for RR CLL, given the superior efficacy of novel therapies."
There's a lot more information in the full review article, including advice about assessments of your general health and any co-morbidities that could be important in the selection of your next treatment.
healthunlocked.com/cllsuppo...
CLLerinOz
Further to my answer above, a study called the CLL-Frail trial studied the efficacy & safety of acalabrutinib in elderly (≥80y) and/or frail patients with CLL which you should find encouraging if you are considering a targeted therapy next.
At last December's ASH 2024 meeting, Barbara Eichhorst, MD, University Hospital Cologne, Cologne, Germany, discussed the study results in an interview for VJHemOnc. "Dr Eichhorst highlights that the overall response rate (ORR) in this patient population was high, and, in general, the agent was well-tolerated. This prospective study is the first to focus on this underrepresented patient group, which is expected to expand due to the aging population."
The abstract presented at ASH 2024 is available here: ash.confex.com/ash/2024/web...
CllerinOz
Hello Venk. To add to what others have said, btk drugs like ibrutinib and acalabrutinib are oral therapies with very tolerable side effects for most people. Btk drugs are excellent options for older people with cll. At age 80, a btk drug like ibrutinib might be the only treatment you ever need for cll.
India is well known for manufacturing generic versions of drugs. Neil seems to think there is a generic version of ibrutinib there which could be a great option for you. Acalabrutinib and Zanubrutinib are second generation btk drugs and probably better than ibrutinib, but I don’t know if you have access to them.
Lots of people are still taking ibrutinib anyway and doing well on it. If you meet the criteria for treating again, you may want to discuss btk drug options with your doctor. Generally speaking, oral btk drugs are very effective and a lot easier than your prior treatment. Good luck to you. I hope you will report back and let us know how it works out. I think the cll community on this forum enjoys and benefits from reading about how cll is treated in other places.
Thank you very much.. I had earlier in 2018- 19 chemo therapy of 6 cycle s.
BTK inhibitor drugs are manufactured in India
Acalabtutinab. They are expensive.. There is no alternative.
The only issue is about the side effects. Are they very serious and life threatening?
Since we take these orally and stay at home
and since there are doctors available at nigh
I anm a bit curious on the possible side effects whether they can be manageable at home.
Side effects vary among people on btk drugs, acalabrutinib has less side effects than ibrutinib.
That said, I have been on btk drugs for 7 years now, first ibrutinib and then acalabrutinib. I had relatively mild side effects on ibrutinib and currently have negligible side effects on acalabrutinib. I stay quite active and neither drug kept me from doing anything I wanted to do.
I think that is true for most people on btk drugs, that is, they are usually well tolerated and dosages can be adjusted to deal with some side effects. It is true some people do not tolerate btk drugs as well as others, but I think the odds are quite good you will do well on a btk drug and that it will provide excellent disease control of your cll.
Insofar as taking acalabrutinib for life, that would be a great problem to have. It would mean you never became resistant to btk drugs and that your blood cancer will be controlled for your life with a pill or two a day. Lots of people with other cancers face much more harsh therapies that dont work as well.
I would add that there is a developing trend where some people who do well on btk drugs for a long time may be able to pause therapy for perhaps years and just jump back on btk drugs if their cll progresses. Cancer treatments can be scary and your anxiety is normal, I was quite anxious starting ibrutinib. As we age many of us are not fit enough to take chemotherapy or do a transplant. We are most fortunate to have these new drugs that even the elderly can tolerate well.
There unfortunately are some people who do not tolerate btk drugs, but there are other oral options.
Thank you very much for very encouragingreply.
After taking whole body PET scan, I may start
Acalabruutinab, ( 2 per day, 100g tablet s).
Doctor told me that i have to take life time.
Is it so?
When I started on Acalabrutinib, my cell counts were very high. I started on a half a dose to reduce side effects. Stayed on half a dose for 6 months and got bloods back in the normal range. They changed the formulation of Acalabrutinib at that point and the new formulation caused me more side effects. So I went off of it for the last 2 years. I'm also not one to take any drug for life, without breaks. I just watch my blood counts for indication that I may have to go back on.
where do you live in India and who is your doctor?
I am living in Bangalore and I am on wait and watch for last 10 years. I am 70 years. I was under the impression that now CLL can be treated with tablets as almost everyone in the group is doing. I go to HCG hospital every 6 months for a check up. Don’t worry now there is so much advancement in medicine you should be fine.
Is Gazyva available to you as a treatment? It is infusion but limited course of immunotherapy. My husband is 85 and had his first treatment with it in 2015. He had two subsequent courses but the first two times got 2 years treatment free and this time, after a short course of low dose Venclexta with it he is now over 3 years and doing well with no signs of recurrence.
Awe you ask very good questions
As a medical doctor and CLL patient that just finished treatment for relapsed CLL, I have a few thoughts for you.
When to treat is a good question.
Most of the world goes by certain criteria, such as
1 B cell symptoms like severe fatigue, anemia, unexplained fevers and or wt loss
2. low platelets
3. Persistent anemia.
4. Enlarged painful spleen, and:or lymph nodes.
I do know that there are studies underway, looking at benefits of using newer treatments very early in the course of disease as opposed to waiting until the above criteria met. I do not know the outcome.
I know a physician with leukemia who had life-threatening complications and therefore like to get treatment very very early each time at relapses.
As to which oral treatment and/or combination treatment is best depends on
1 overall general health
2 extensive lab work, looking at genetic markers kidney function, and other factors.
I would be happy to look over your labs and if you want, you could let me know if you're having any of the B cell symptoms
I can also refer you to the CLL Society webpage which answers most of these questions very thoroughly and yet in terms of non-medical people can understand.
Good luck and God bless you
Skipro
Hi
Thank you very much for your valuable suggestions. My blood picture is not very bad. My overall health is ok, platelets are 1.9 lakhs ( normal 1.5 laks -4 .00 lakhs,}
Hb slightly low 11.9 Normal ( 13 to 17 )
TLC is 14,400 / cumm ( normal 4000 - 10,000) , no fatigue,No night sweats, no fever , no weight loss.
The triggering point is sudden increase in PLEURAL EFFUSION in right lower of lung. It was drained and a biopsy was sent to lab , IHC report confirmed as relapse of CLL, Now my doctor ordered Whole body Pet scan, Report is expected in couple of days.
Then my doctor decides when to start medication ,He told that Chemo therapy is not desirable as I am 80 years.
,
Good morning,
I am not sure why the CT PET scan would be needed? Did they give you a reason? Were they concerbed about other cancers????
If you had wheezing or shortness of breath, one would look for large lymph nodes compressing your airway with a CT scan and consider treatment.
If you had pain in your left upper/lower abdomen, one would look for an enlarged spleen by just a hands on physical exam with an ultrasound or CT. The same goes for an enlarged liver if you had pain in your right upper abdomen,
Another set of tests would help determine which oral pill you would do best with. For example, if you had a TP53 mutation a BTKi like Acalabrutinib would be preferred.
I, too, had 6 rounds of B &R infusions in 2018 and by 2021 began to have a resurgence on CLL. In 2023, I began more treatment with 4 months of 100mg of Acalabrutinib twice a day. In my case, Venetoclax was added after 4 months, but while I was on Acalabrutinib only, I tolerated it very well. But one caution: Protein Pump Inhibitor drugs can increase the chance of getting C.Diff while on Acalabrutinib. I was prescribed one and got C.Diff. C. Diff is a very unpleasant and hard to cure gut infection.
So BTK inhibitors are good for older people...what is considered "older"? Also, where does V&O treatments fit in/compared to BTK treatments?
Those over 65 are usually considered 'older', although this may be up for review in the era of targeted therapies. The FRAIL-CLL trial was for elderly patients, 80 or older.
Although it is a year old, the review article I referenced above ( nature.com/articles/s41408-... ) provides an excellent general summary of the evidence for both BTKi based therapies and venetoclax (or BCL-2) based therapies in the relapsed/refractory setting and also goes into detail about the possible adverse events associated with them. It concludes:
"We are now fortunate to have multiple effective therapeutic options for patients with RR CLL with tolerable safety profiles. With emerging classes of therapy arise new challenges in optimal use and effective sequencing of treatments. Complete care for the patient with RR CLL includes optimization of health factors ostensibly unrelated to CLL, consideration of infection prophylaxis measures and early identification of secondary malignancies, and early discussions about life goals and priorities with assessment of factors which may drive the kinetics of progressive disease."
In other words, along with considering a patient's general health, goals and treatment preferences, it's important to get the right sort of testing done if possible before deciding on a treatment. That will also help to guide which therapy might be best, based on disease features including any acquired mutations. Finally any potential sequencing implications should also be considered.
It's complex - which is why getting advice from a Cll specialist is a good idea.
CLLerinOz
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