YOUR OPINION PLEASE - LONGER TERM REMISSION WITH IBRUTINIB OR SHORTER TERM WITH MORE TRADITIONAL TREATMENTS THAT HAVE LESS SIDE EFFECTS?

[Palmetto]

Hi all, back again. Husband doing great after treatment for AIHA. As I suspected since back in hands of our original doctor, he wants to start immediately on Ibrutinib. Hemoglobin already back to over 11.3 after a low of 6.1 only a month ago,(wouldn't that indicate that he can make red blood cells?) white count down to 12. Had 4 rounds of Rituxan and steroids with excellent response. Since Ibrutinib pretty much suppresses your immune system, in this time of Covid 19 (we are in Miami of all places)and the need to go for weekly blood tests, I am not happy that he is already wanting treatment to begin. I would prefer to wait until he starts to show more active CLL signs instead of jumping in now but I hesitate to question the doctors decision when we more or less had to come back to him with tail between our legs after switching to another doctor last year who was no help at all when he had his last hospitalization. In fact, that doctor never even bothered to see if he survived or not. We are happy to be back in the hands of a doctor who actually cares about his case, but husband already has atrial fibrillation which did not respond to cardioversions or ablations and I worry that Ibrutinib will make it even worse. Also he is 81 and I still feel it is better to have treatment maybe once every year or year and half for a few rounds with no side effects than the risks of a new drug. Thoughts please. He had great response to Gazyva back in 2016 and again in 2019 and now a great response to the AIHA with Rituxan. I asked if we could just continue Rituxan but he said that would not give long term recovery from the CLL. But since husband has had virtually zero side effects of those treatments I still hesitate to go in a new direction. Neutrophils are best have been in years at 4 absolute count. Hope everyone is doing well.

[PlanetaryKim]

Can you get acalabrutinib or better yet venetoclax instead? I do not think it is wise to go into ibrutinib with pre-existing afib. and in US and elsewhere there are other choices available.

[Palmetto in reply to PlanetaryKim]

Thanks Kim that is my thought as well. He is also 81 years old. He never had any problems with Gazyva or Rituxan. The only bad side effect was from one round of Bendamustine and rituxan that crashed his counts. Those are the only treatments he has had since 2016. 4 Gazyva with leukeran in early 2016. One round of B/R in July 2018, and 3 rounds of Gazyva in 2019, no treatment since then until the autoimmune hemolytic anemia last month. He wants to save Venetoclax as a back up if the Ibrutinib isn't successful. At his age I am not looking for a cure, just a gentle treatment to keep him going. He also has high blood pressure and reduced kidney function which is another reason I worry about Ibrutinib.

[AussieNeil Administrator in reply to Palmetto]

I agree with PlanetaryKim. If his doctor insists on a BTK inhibitor, why not Acalbrutinib? It was approved for CLL treatment last November by the FDA and appears to have about half the cardiovascular risk of Ibrutinib. We know that CV risk increases over time with Ibrutinib and it would be wise to presume the same happens with other BTK inhibitors until proven otherwise.

.

The potential problem with both Rituxan and Gazyva is that they are both CD20 monoclonal antibodies. CD20 is dimly expressed on CLL cells and that expression can further dim over time through selective pressure. That's why, I suspect, his doctor is reluctant to prescribe either of these.

.

I would question the reluctance to use Venetoclax. There is also the possible option of Idelalisib.

Neil

[sllincolorado in reply to AussieNeil]

Hey Neil in layman’s terms then what would be the benefit of ultra v where the treatment is CD20?

[AussieNeil Administrator in reply to sllincolorado]

Ultra-V is Ublituximab (CD-20 Mab) Plus Umbralisib (Pi3K inhibitor) in Combination With Venetoclax (BCL-2 inhibitor). There's the same proviso with Ublituximab as with Rituxan and Gazyva, i.e. possibly reduced effectiveness due to CLL cells losing CD20 expression. The other drugs would reduce the risk of resistance occurring and Palmetto's husband's specialist wants to hold Venetoclax for later. It's a clinical trial and is recruiting in Tampa and Jacksonville, so it would be worth asking if Palmetto's husband meets the inclusion criteria and doesn't fail the exclusion criteria. More information on the clinical trial, including a reference to it, was provided in DriedSeaweed 's post here: healthunlocked.com/cllsuppo...

Neil

[Palmetto in reply to AussieNeil]

Thank you Neil I just wish it was easier to approach our doctor about alternatives without upsetting the patient doctor relationship. I remember when we went for second opinion with Alencar at Sylvester at University of Miami he already talked about acalabrutinib when it was still in trials. I have asked for a teleconference with our cardiologist about his opinion on the side effects of ibrutinib. They are in the same hospital network so I hope he can talk with our oncologist about the risks. I am going to tune in at 7:30 tonight to the online forum conference about Ibrutinib posted here a few days ago.

[aloneifly in reply to Palmetto]

Perhaps if his kidneys aren't good then Venetoclax may not be an option due to the TLS problem.

I hope he does well on whatever the treatment is.

[MsLockYourPosts Passed Volunteer in reply to Palmetto]

Good to include a cardiologist, and even a nephrologist on your husband's "team". Connecting the three doctors might work better than you having the treatment discussion without them. It would, perhaps, not in any way imply a lack of trust, but rather a need to have decisions made with all health issues considered.

[MsLockYourPosts Passed Volunteer in reply to AussieNeil]

I just brought up the trial sites for Ultra V. There are sites all over the country - I was surprised at how many, as it's a small trial.

[W00dfin]

I had to stop Ibrutinib in November due to afib after 2 1/2 years of Ibrutinib. I am 69 and the Cardioversion worked fortunately. I am being followed on no treatment and being monitored with flow cytometry. My oncologist had me get labs last week and he says my CLL is still under control after almost 9 months of no treatment.

Hope this helps.

[Palmetto in reply to W00dfin]

Thank you