CLL Support

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steve5441 profile image


Hey everyone, I started this trial on 2/02/2020 at Memorial Sloan Kettering in NJ. After being diagnosed in 2009 with CLL, I have been through 3 prior treatments, FCR, Ibrutinib and Venclaxta. I had a 5 1/2 year remission with FCR, 3 with Ibrutinib,and about 18 months with Venclaxta. After my relapse in December 2019, I was offered a place in the LOXO trial. BMB, CT Scan and numerous blood tests were all completed prior to acceptance, I almost missed the trial because my platelets were too low, 29. I started the dosing with the max amount of 300 mg. There is quite a bit of testing for the first 30 days, then it slows down. I've had zero reactions to the drug, so far so good. My ANC has gone from .9 to 2.9 platelets 29 to 113 and all of the reds have improved greatly. Dr. Mato is very happy, and so am I. My CLL loves my bone marrow and always sets up lodging there, my routine blood testing tells all, I always get very anemic. Never had a swollen gland, node or organ. My 11q and a few other abnormal deletions and mutations has put me into a higher risk category. There will about 150 patients in this phase 1 study worldwide , MSK is going to have about 50 of the slots. From what I am being told, a good number of the participants are getting good responses. We all hope it continues.

9 Replies

Congrats! Sounds like you re getting good results very quickly!

AussieNeil profile image

Loxo-305 is one of many second generation BTK inhibitors but not much discussed, so I hope you don't mind me adding you in as an additional trial contact:

Great to hear of your early promising response.


steve5441 profile image
steve5441 in reply to AussieNeil

Any thing to possibly help.

Steve it sounds as if you are off to great start with your trial. That’s an impressive jump with your platelets. I am sure you were happy to see that. I look forward to reading updates on your trial. It’s nice to know we might get a second chance with a btk drug if we become resistant to the covalent binding versions.

That is great news for you. Wish you cont'd progress.

HI Steve- My husband is also on this trial at MSK NJ - glad its going well for you

Just seeing this post. I started in the Phase 1/2 end of February. I go through MSK in NYC. But since the covid I’ve been getting my tests at Augusta Health. Seems to be working out. Let’s see for how long.

Canuck901 profile image
Canuck901 in reply to NaderE

How tolerable is the drug ? Always. Good to see new and hopefully improved drugs in the pipelines

NaderE profile image
NaderE in reply to Canuck901

So far no apparent side effects. Glad for science and new drugs.

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