irutinib plus venetoclax

[111853]

Would love to hear from anyone that has been doing the fixed duration treatment with irutinib plus venetoclax or accalabrutinib plus venetoclax. What has been your experience and, knowing what you know now, would you choose this treatment plan again?

[Newdawn Administrator]

I did ‘fixed duration’ Ibrutinib & Venetoclax as part of the Flair clinical trial. Treatment duration was 3 yrs as the trial dictates the meds last for the same length of time as it takes to reach remission. I reached uMRD and tolerated Venetoclax extremely well. I took Ibrutinib for 15 months but ceased due to severe myalgia and arthralgia but continued successfully on mono Venetoclax.

I’d recommend it as an effective clinical treatment.

Newdawn

[lankisterguy Volunteer]

Hi 111853,

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We have had many discussions on this subject, here are a few of the most recent:

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CLL SOCIETY: THIS WEEK September 13, 2022 (Newsletter)1 month ago

healthunlocked.com/cllsuppo...

Read More: cllsociety.org/2022/09/ash-... - ASCO 2022: Four-year Follow-Up from a Phase 2 Study of Obinutuzumab, Ibrutinib, and Venetoclax Obinutuzumab, ibrutinib, and venetoclax have been

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Durable Remissions in CLL With Fixed-Duration Triplet (Gazyva, Imbruvica, Venclexta) at 4 Years 4 months ago

healthunlocked.com/cllsuppo...

And then of course it's unanswered, compared to ibrutinib-venetoclax, do you need ibrutinib, venetoclax, obinutuzumab -- do you need the antibody? And so those are questions that will be answered in follow-up and also phase III trials.

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DEBATE: Sequencing Small Molecules Is the Way to Go, by Dr. Jennifer R.Brown at the Society of Hematologic Oncology 2022 Annual Meeting 23 days ago

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

In matching adjusted indirect treatment comparisons of first-line acalabrutinib obinutuzumab to either ibrutinib or venetoclax obinutuzumab, first-line acalabrutinib obinutuzumab improved PFS and OS against even those excellent comparators, suggesting very durable long-term remissions.

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What does the future look like with the current BTK & BCL-2 inhibitors? 8 months ago

healthunlocked.com/cllsuppo...

My family member is allowed to join a trial with either Ibrutinib, Ibrutinib and Venetoclax or Venetoclax and Obinutuzumab. The choice of medicine is random. The alternative is regular chemo with immunotherapy.

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Ibrutinib Plus Obinutuzumab Elicits Intriguing Survival Benefits in Relapsed/Refractory CLL - OncLive interviews Dr C Ryan, Dana Farber 3 months ago

onclive.com/view/ibrutinib-...

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Len

[111853 in reply to lankisterguy]

Thank you for all the links. I have done lots of research on this combo but was still hoping to hear some personal experiences on how the combo was tolerated, what lifestyle changes were made while on both drugs…etc. I know we all react differently but knowing some of what others have gone though physically and emotionally helps me feel less alone on this journey.

[tozer]

I started treatment as part of trial with first Ibrutinib and then after three months Venetoclax was added. I reached MRD after 21 months and I was taken off Venetoclax on the basis that I had responded well and could easily go back to Venetoclax if an alternative was required to Ibrutinib in the future. I am now almost 6 years post starting (4 years after stopping Venetoclax) and continue to be in good health and still at MRD, though as we know with Ibrutinib I have a low Lymphocyte count. My only side effect has been joint pain, but that passed after stopping Venetoclax. I got Covid about 5 months ago whilst in the UK and within 24 hours was given an infusion of Sotrovimab. (The NHS were amazing!). I felt better after about an hour. I have just had my booster (5th Jab here in Sydney) and all is well. Good luck and hang in there!

[111853 in reply to tozer]

thank you! Very encouraging. Stay well.

[Catnap7]

Hi I’m almost 2 yrs out of my2 yr Ibrutinib and Venetoclax trial I was UMRD somewhere around 1 yr into the trial As you know we all experience side effects quite differently I did not have bad fatigue, nausea, or problems with my digestion My most pronounced side effects were terrible mouth sores and joint/muscle pain After trying everything to irradiate the mouth sores my specialist lowered the dose as the condition of my mouth was worsening every day and I was only able to eat by deadening my mouth with a rinse Even with the lower dose I had the mouth sores but much less severe My joints/muscle problems were remedied through daily light exercise I was able to control it especially in the water I always felt like Ibrutinib sniffed out and followed a trail to areas where I have Arthritis from my profession

The very last month of the trial I developed some heart issues but they went away when I stopped drugs … In remission and feeling GREAT now Yay!!!!!!! Just praying 🙏 it will keep going on Grateful for every day!!!

Catnap7 🐈🐈

[AR0613]

I have been on Ibrutinib and venetoclax for 3 years as part of the Flair Trial here in the U.K. In the early stages I became quite unwell with severe neutropenia and fevers but once the dose was reduced ( 280 mg Ibrutinib & 200mg venetoclax) things calmed down and since then I have remained well. Over the past year I have dipped in and out of uMRD status so missed the opportunity to come off treatment as per the Flair Trial protocol and so will remain on this treatment for another 3 years - a total of 6 years.

How has it affected my daily life? For the better! My health deteriorated pretty rapidly in the 9 months before i started treatment and once the dosage was sorted I have been stable. I am pleased . Relieved. Yes I have some commonly reported side effects which many have mentioned on this forum ( dry brittle nails, dry skin, fatigue, raised blood pressure ) but they are all manageable .

Perhaps the only issue that bothers me is that after 6 covid vaccinations I have not produced any antibodies and my CLL Consultant tells me this is because of the treatment I am on. Consequently, I’m still shielding - as is my husband. Obviously, this is difficult.

Despite this, I am grateful for having access to such an effective treatment and yes, I would choose it again.

[111853 in reply to AR0613]

thank you for your reply.

[Olgun16]

Hello, I had two chemotherapy treatments in 2008 and 2014. Upon second relapse in 2015 I was categorised as a hard to treat patient with very few options. I participated in the Clarity trial in the U.K. (two year fixed duration) Ibrutinib + Venetoclax. Towards the end of the two year I was diagnosed with Arterial Fibrillation, now taking medication to control condition. I am now in my 6th year of complete remission MRD negative. I attend 6 monthly check ups and live a full life. No hesitation in recommending this fixed duration treatment. Good luck.

[Iupiter]

I took part in a 15 month clinical trial (ashpublications.org/blood/a... with those two drugs + Obinituzumab. I finished it almost one year ago and was found to be uMRD. So far I am still uMRD.

This is not the question you are making, but in my case it worked great. I would recommend it and do it again if I were living my life over again.

Regards