After Ibrutinib failure, lymphocytes up again. Maybe another trial with Idealisib

[romarin]

Now 8 months since I had to stop the FLAIR trial of Ibrutinib and Rituximab due to side effects (severe and debilitating muscle and joint pain) I have been pretty well with bloods within normal limits. Now, sigh, the lymphocyte count is up again and the concern is how quickly this will increase.

It has been suggested I might be able to do Unity trial of Idealisib combined with Ublituximab (I think this is the right name) but this would require initial treatment and monthly transfusions thereafter. A huge commitment as I am a travel writer....(insurance would also be an issue) SO I guess I would have to accept FCR instead..... I know there are other new treatments, Venetoclax and Acalabrutinib for example, but not available on NHS.

Any thoughts, dear CLL chums? Merry Xmas and bon courage to all.

[MartyR]

Hello Romarin,

I'm sorry to hear that the Flair Trial of Ibrutinib and Rituximab is causing such side effects and you are considering changing to another option.

Obviously I do not know your full situation, location, etc etc. But perhaps you might consider Idelalisib on its own?

My GS trial of B + R + I (or Placebo) only entailed B + R for six months - then just taking Idelalisib twice a day - three years now.

For me this appears to keep my Blood Levels reasonable and the routine CT Scan notes that it is a "stable disease".

When I do have to stop taking Idelalisib (two months) to resolve other medical issues -- my lymphocyte count and nodes increase.

So Idelalisib is described to me as a "Maintenance Drug" that keeps the CLL at bay -- but never cures.

(When I travel -- the Insurance Companies I talk to understand Idelalisib maintenance function and ask questions relating to recent blood results, side effects, etc. -- Rather than just focusing on having a cancer.)

OK everyone is different - and i have had some side effects relating to the low immune system, chest infections, diarrhea -- but all can be tolerated..!

Best Regards,

Marty

[maggiesgrandmom]

Sorry your break from Ibrutinib didn't last longer. I am off it for 6 weeks now (after 20 successful months). I feel a bit like a "failure" since I "failed" Ibrutinib the miracle drug. (Cardiac toxicities). I hope you could try another one and have read that Idelalisib is a viable option too. Not sure if that would be covered though. Merry Christmas to you and all the helpful people on this blog.

[Cammie]

Romarin

Whilst FCR is a commitment in time etc it is still very successful.

Normally lasts for six cycles over a six month period.

All drugs have side effects and we all react differently I know having been hospitalised 5 times whilst on FCR,however, many sail through without too much problem.

It all depends on comorbidities and your individual reactions.

Wishing you well!

Geoff

[Cllcanada Top Poster CURE Hero]

Sorry to hear of your treatment failure, but like you, ibrutinib was not my drug.

I'm just starting Zydelig (idelalisib) and rituxan... the bi-week infusions are demanding IMHO coupled with weekly monitoring for liver toxicity... CMV, PCP, colitis and pneumotitis etc. ☹️

Please bear in mind that FCR is still the gold standard treatment for fit younger patients... 6 months and your done..usually for years...

Venetoclax has limited FDA approval in the U.S. and was approved in Europe for very narrow use... acalabrutinib hasn't begun FDA approval so will be some time off...

Wishing you a hope and good health...

~chris

[terryI_uk]

Hi romarin, sorry your counts have started to climb, I suffer the same side effects as you coupled with fatigue, don't think the pain is as bad as yours as I normally cope albeit with some paracetamol, I was hoping your lower counts would last longer but unfortunately it's still early days for ibrutinib trialling and we all have different outcomes which is unfortunate, hope you find the right treatment for you very soon, good luck and have a good Xmas and new year, Terry

[romarin in reply to terryI_uk]

Sorry you are still suffering, Terry. Hope it diminishes soon. Good luck.

[bkoffman CLL CURE Hero]

Acalabrutinib would make good sense if you stopped ibrut due to adverse events and not progression. At ASH there was positive data in folks just like you. It does mean finding an appropriate clinical trial. Stay strong Brian - volunteer medical director, CLL Society.org

[romarin]

Many thanks for such helpful replies. Probably if no other trial is available I will consider FCR this time. I'll keep you posted.

[Bluerunner2 in reply to romarin]

Did you try FCR? My husband was in trail with Ibrutinib and venetaclax but had to discontinue ibrutinib due to atrial fibula tigon. We are considering FCR.