Cll treatment

Hi everyone! I would like to introduce myself first. I am 56 now and I am CLL patient after 5 years being on watch period. My treatment in Obinutuzumab and Venetoclax.( because I refused other pills which you have take forever). I had allergy reaction each time getting Obinutuzumab but was under good care of nurses. Now I am still on Venetoclax for the next 4 months and after that I am done. My whole treatment so far is going very well with no side effects. Blood counts improved very rapidly. This really good treatment choice. I take pills for only one year not like others for life as long as they work. I wish you all best treatment you can have and get well. ❤️

[cajunjeff]

Hello Krys, welcome to the forum. Its great to read you are doing well on your treatment.

Lately, more and more when starting therapy cll patients are offered a choice between an oral btk drug (like the one you say is taken forever) or limited term Venetoclax plus Obinutuzumab.

These are both relatively new therapies and how they play out in the end is unknown. My thought is that many doctors offer a choice instead of making a recommendation because there is not enough data to know which therapy, or sequence of therapies, will turn out best in the end. Since cll can be so different among people, it might even turn out some are better off starting with a btk drug and vice versa.

Unfortunately, the nature of cll is that in many, if not most, cases our cll works its way around treatment and we will need a new therapy.

I am on a btk pill a day forever treatment, as you describe. I will be thrilled to take it forever if its works that long. I have few side effects and live normally. I fell quite fortunate in an odd way to have a serious cancer that I can treat with a simple oral drug.

It would be great if you and I both beat the odds and never need another treatment. If we do progress, as things stand now, our new therapy would probably be a btk drug for you and V plus O for me.

Which therapy will work best as a second therapy? I dont think anyone knows yet. What is the best sequence to start therapy? If our doctors knew the answer to that question, I dont think they would offer us a choice of therapy but rather recommend one over the other.

Its certainly a good sign that you have responded early and well to treatment. Hopefully you have a long and deep remission. And hopefully if and when your or I progress with our cll, we will have even better options.

I dont see my btk daily drug a lifetime thing, more of a placeholder until something better comes along. As I said though, I would be thrilled to take it for life, that means it never stopped working.

Good luck to you. We are all hoping the remissions with V plus O turn out to be very durable.

[MovingForward4423 in reply to cajunjeff]

Be cautious with Chronic Lymphocytic Leukemia (CLL) as it’s not currently curable, and B cells may mutate and become resistant to treatment. While Bruton’s Tyrosine Kinase (BTK) inhibitors are used lifelong, resistance is not unusual, necessitating a switch to different treatments. Timing in using these treatments is crucial. For instance, I first used BTK, then entered remission. If resistance to BTK develops, next-generation BTK inhibitors or B-cell lymphoma 2 (BCL-2) inhibitors like Venetoclax are options. Remember, fixed-term treatments control the disease rather than cure it. If you need further treatment, Venetoclax might not be viable again. Always follow your consultant’s advice there is a long road ahead.

[LeoPa in reply to MovingForward4423]

If he stops after 1 year not on account of becoming resistant to the drug he could do another round perhaps?

[cajunjeff in reply to MovingForward4423]

Well thats kind of what I just wrote when I wrote that the nature of Cll is that it works its way around treatments. I expect for many, if not most, they will sequence to V or V plus O from their btk drug or from V plus O to a btk drug.

No one knows for sure. Lots of people are already ten years out on btk drugs. Given that cll is a disease mostly of older people, some might need just one treatment.

[MovingForward4423 in reply to cajunjeff]

I was replying to the author of the thread.

[Katie-LMHC-Artist]

Welcome! I too had a choice when I started treatment last December. I chose to go on the BTK Inhibitor, Acalabrutinib, because it would be easier for me since I still work. Taking 2 pills a day is not difficult. My only side effect is a morning headache and after a cup of coffee my headache goes away. The CLL journey is a lifetime journey to manage it until a “cure” is found. I wish you luck on your journey. Surround yourself with supportive people, exercise, eat healthy, and stay in one day at a time. Take care! 🦋

[Hidden in reply to Katie-LMHC-Artist]

Thank you for replying. I wish you all the best with your treatment. Hopefully you will get use to the Acalabrutinib and headache’s will go away. I just wonder how long you are taking it? ❤️🤗

[CLLCalifornia-USA]

I’ve been using Ibrutinib for nearly 8 years and I feel fabulous. I’m certainly fine taking it for as long as it works. A lifetime would be great. It gives me the freedom to do whatever I want. No one has a clue that I have CLL/SLL unless I choose to tell them. Good luck with your choice. Sally

[Hidden in reply to CLLCalifornia-USA]

Hi! I am so happy for you that your meds are working for you and you feeling great! I was offered Ibrutinib but was worried about taking it “as long as it works”. I have one year treatment V+ O and hopefully remission after it’s finished. What next I have to wait. It’s great to know that after 8 years you feel good and who knows maybe Ibrutinib will be my next choice. Thank you for sharing your experience with me. ❤️🤗

[CLLCalifornia-USA in reply to Hidden]

Best of luck. Keep us updated. Thanks, Sally

[Katie-LMHC-Artist]

I’ve been on Acalabrutinib for a year. Of course, not knowing a lot about Acalabrutinib, I had my concerns. Again, this site has been helpful. I have read other people’s posts and have reached out a few times. My morning headache is mild and the caffeine manages it. I live a normal life and often forget I have CLL! All the people on this site are amazing and helpful. I’m glad you reached out!🦋

[Hidden in reply to Katie-LMHC-Artist]

Hi Katie! It’s important what we eat to keep CLL under control and avoiding some of it like carbs (all -white rice, white pasta…) limited in the diet red meat, dairy, deli meat. I hope I am not boring and you know all this. I have great recipe ( from a special friend) for anticancer juice. It covers vitamins and minerals we need to feel good and energized and keep CLL away from coming back. If you like to try it let me know if not just ignore it. Great talking to you! 🤗

[Katie-LMHC-Artist in reply to Hidden]

Thank you. I have lots of books at home regarding diet and cancer. I just bought a new juicer. You’re welcome to share the recipe with everyone or send privately. You could post the anti cancer recipe and many of us may try it. Thank you. 🌼

[Skyshark]

Short and fixed duration therapies are more and more becoming the wise choice for all except TP53/17p aberrations (with IgHV unmutated). (my narrower view)

tandfonline.com/doi/full/10...

Weighing up short duration Ven based vs continuous BTKi

[Hidden in reply to Skyshark]

Hi! Great to hear from you. You are absolutely right. 🤗

[sidesy]

Really interesting post as I'm concerned what treatment I'll be given and it seems it's very hit and miss what works to what gives poor side effects. I wish you well on your journey 🙏

[Skyshark in reply to sidesy]

In UK what you should be offered depends on your genetic markers. TP53/(17p) aberrations have a wider range of 1st line options but it's just a wider choice of BTKi monotherapy. Heart conditions may contraindicate BTKi, kidney condition may contraindicate Venetoclax.

These are the England and Wales NHS approved treatments, if you can access private treatment more options may be available. Scottish NHS has a separate approval but should track England.

Short duration.

Venetoclax + Obinutuzumab, 12 cycles, 48 weeks. Intense first 9 weeks with 5 of the 9 IV's. (CDF funding for TP53 wildtype) High risk TLS first IV will be as inpatient.

Venetoclax + Ibrutinib, 15 cycles, 60 weeks. Tablet only. Reduces numbers at high risk of TLS from 22% to 2%.

Both have a 5 week ramp up for Venetoclax. Either 9 or 19 blood tests and 2 inpatient stays (IV of Rasburicase) if Lymphs and node size indicate high risk of TLS. TLS is Tumour Lysis Syndrome, lymph cells are killed off very quickly on first contact with Obinutuzumab and Venetoclax. They release their contents into the blood stream and that can damage the kidneys. Drink lots of water, more than 2L a day is good.

"In development" maybe approved for NHS use sometime next year, may be limited access. Don't wait on them, when doctor tells you you are ready for treatment, you ARE ready for treatment.

Acalabrutinib + Venetoclax. Should be on par with V+I.

Acalabrutinib + Venetoclax + Obinutuzumab. Should be the gold standard but may not be available to all.

Continuous BTKi monotherapy.

Acalabrutinib for all. Ibrutinib or Zanubrutinib for TP53/(17p) aberrations.

[Snakeoil in reply to Skyshark]

Acalabrutinib + Venetoclax. Should be on par with V+I.

Acalabrutinib + Venetoclax + Obinutuzumab. Should be the gold standard but may not be available to all.

Neither of those is approved and jury still out on whether they beat V+I or V+O.

[Skyshark in reply to Snakeoil]

Still "in development".

A-V-O expected start of appraisal is mid May '24.

nice.org.uk/guidance/awaiti...

AV still not got a start date.

nice.org.uk/guidance/awaiti...

But since I wrote that, first line V+O for all without CDF funding has appeared and has a date, 30 April 2025. That will put it's availability on equal footing to V+I.

nice.org.uk/guidance/indeve...

Other than VenR there is still a lack of combo treatments for R/R 2nd lines. CLL13 trial for first line has shown V+O is superior to VenR and I would expect that to be true as 2nd line or repeated. GIV wasn't much different to V+O, not enough for the increased cost and NICE application for GIV has been discontinued.

Article available on sign up. (+2 free)

nejm.org/doi/10.1056/NEJMoa...