All good things must come to an end

[rcusher]

I just had my 3 month checkup and it looks like my Ibrutinib is starting to stop keeping my counts in check. They have not gone crazy but have been slowing rising this past year and actually doubled over a 6 month period.

My Doctor thinks it's probably good to look at another treatment while I am still in pretty healthy right now. He presented 2 options with one being venetoclax along with rituximab ( 6 mnths) and the other a clinical trial which he believes I would be perfect for because other than CLL I am in good health.

I have been on Ibrutinib for almost 5 years now with great results. I have Trisomy 12 and I am 76 years old.

Any thoughts.

Jack

[annmcgowan]

Hi Hack sorry to hear Ibrutinib is no longer working for you. At least you had 5 years and there are options ahead, that’s good news at least. I wish you all the best with your new treatment. Keep us informed on what you receive and how it goes for you.

Good luck

Ann

[Newdawn Administrator]

Hi Jack,

Any idea what the other clinical trial comprises? Good to have options and Rituximab & Venetoclax could be very effective for you possibly leading to undetectable status.

Importantly, you’re in good health and it sounds like your doctor is pro-active. I’m Trisomy 12 too and achieved uMRD on Ibrutinib & Venetoclax.

Best wishes whatever treatment you choose.

Newdawn

[CLLCalifornia-USA]

Jack,

I’ve been on Ibrutinib for nearly 7 years, also Trisomy 12 and unmutated. If I didn’t have CLL/SLL, I would be healthy as I have no other issues. Keep us posted as to your decision. Wishing you the best. Sally

[IRN83]

Four years ago my body had a severe reaction to Ibrutinib so went on Venetoclax. I did achieve MRD but it only lasted two years and have restarted treatment. I had no adverse reactions to V! Unlike Ibrutinib. So I would recommend trying V before an experimental drug. We know V does work.

A side note, this time it took 7 months for the V to show any progress. Will know if it is working after another test this week.

[SofiaDeo in reply to IRN83]

But unlike you, they are not reacting to BTK inhibitors. Why try a totally different mechanism of action? Some of us who react to the BTK's do not react to BCL2 (Venclexta) and vice versa. There are a number of people here saying this, it's not just me. Pirtobrutinib is not in a Phase 1 trial, it's not a total unknown.

[AussieNeil Partner Administrator in reply to IRN83]

IRN83, it's great we have the choice between BTK and BCL-2 inhibitors but ibrutinib is hardly experimental! We have members from the initial ibrutinib trial entering their second decade of successful CLL monotherapy management. Ibrutinib was FDA approved before venetoclax too; 2014 vs 2016 for 17 del CLL.

Neil

[IRN83 in reply to AussieNeil]

I must have miss communicated. I have Nothing against Ibrutnib, or its successors. Neither am I saying it doesn’t work. I said it didn’t work for me.

a brief summary of my experience with Ibrutnib (after FCR and Br treatments in the previous 4 years)

After taking Ibrutinib for 6 months, during which time I had numerous pneumonia infections, i went to my GP and he immediately sent me to ER. They took one X-ray and immediately admitted to the hospital. The DRs did so many tests, transferred me to a second hospital, ran more tests, different antibiotics several lung biopsies and other things but couldn’t figure out was wrong. I didn’t respond to any antibiotics. My lungs were so bad that the surgeon who was asked to collapse my lungs and perform another lung biopsy said if he operated on me I would die on the table, because there wasn’t enough healthy lung tissue to close my lungs after the operation.

After I was released from the hospital my Oncologist told me that I had a very rare severe allergic reaction to Ibrutinib - pneumonias. But no Dr, including himself, could have known until they ran all of the tests that showed no virus, bacteria, or fungus had caused the pneumonia

I then waited a year and started Venetoclax , it was the only treatment that put me into MRD, but I was only in remission for 2 years. I have been on it again but it took 7 months for it to start working.

I have never gone more than 2 years without needing treatment

[AussieNeil Partner Administrator in reply to IRN83]

Thanks for clarifying and sharing your treacherous journey! I misunderstood where you were coming from and what you were including in your experimental category.

Neil

[Vizilo]

I wonder if the clinical trial he is thinking of is Pirtobrutinib (LOXO-305), a non-covalent third generation BTK inhibitor that seems to be effective when Ibrutinib or Acalabrutinib no longer work.

Both my Toronto cll specialist and Niagara oncologist mentioned that when my Acalabrutinib no longer works, Pirtobrutinib is the logical next step.

[rcusher in reply to Vizilo]

I am in Toronto and he mentioned that the clinical trial was at Princess Margaret. I will ask when I see him in a couple of weeks.

[Vizilo]

My Niagara oncologist also mentioned that Princess Margaret was participating in the Pirtobrutinib trial. So, it must be the same one. I have read good things about this new BTK inhibitor.

We were discussing next treatment options if and when I need to switch from Acalabrutinib.

[patagozon]

I was curious what factors are involved when deciding to use Venetoclax + Rituximab as a treatment option vs Venetoclax + Obinutuzumab? In my case, only the later was mentioned as an option. Thanks

[narl in reply to patagozon]

hi, I believe Unmuted people get V plus O and mutated people get V plus R

[AussieNeil Partner Administrator in reply to narl]

The FDA has approved venetoclax with the older anti-CD20 monoclonal antibody immunotherapy, rituximab for those previously treated and venetoclax with the newer anti-CD20 monoclonal antibody immunotherapy, obinutuzumab for treatment naive folk.

news.abbvie.com/news/abbvie...

news.abbvie.com/news/press-...

Neil

[Fastbike14]

Hi Jack, sorry to hear the Ibrutinib appears to be not working anymore. I was on it for a similar length of time and was also offered Venetoclax and Rituximab for a fixed 2 yr period when it stopped working. I started said treatment 2 months ago and I can honestly say that I feel really well with significant increase in energy, motivation. I hope that this will be the same for you when you change.

[rcusher in reply to Fastbike14]

Thanks glad to hear you are doing good on V & R and hopefully I will have a similar response.

Take care,

Jack