Relapsed CLL treatment

[venk_46]

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 ?

[AussieNeil Partner Administrator]

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

[venk_46 in reply to AussieNeil]

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?

[AussieNeil Partner Administrator in reply to venk_46]

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

[CLLerinOz Administrator]

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

[CLLerinOz Administrator in reply to 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."

youtu.be/fBvpnrU5bk4(Not working as expected?)

The abstract presented at ASH 2024 is available here: ash.confex.com/ash/2024/web...

CllerinOz

[cajunjeff]

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.

[venk_46 in reply to cajunjeff]

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.

[cajunjeff in reply to venk_46]

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.

[venk_46 in reply to cajunjeff]

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?

[Marthand]

where do you live in India and who is your doctor?

[venk_46 in reply to Marthand]

I live in Hyderabad and treatment is going to be under Basav tara kam hospital

[Marthand]

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.

[venk_46 in reply to Marthand]

Thank you very much Marthand garuIt is very nice of you to respond.

I am very glad you are in India with whom I can share very often

I am 80 yrs old and retired in 2002 after working in PSU