LATEST AND GREATEST LOXO-305 UPDATE: About a... - CLL Support

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LATEST AND GREATEST LOXO-305 UPDATE

steve5441 profile image
9 Replies

About a month or so ago I read a good post about a patients LOXO-305 treatment experiences, which led to some interesting insider discussions. Well today I went for my cycle #15 labs and DR visit, 13 months complete. I am participating at MSK in North Jersey. My Doctor, who I believe to be the Lead Investigator of the US study, gave me the good news that I am in a wonderful remission. I kind of knew that from my past blood work, but wanted to hear it from him personally. The study has 400 patients worldwide, and MSK has 85 of those, Word is that there will be more positive news out very soon about this drug. However, Lilly might not be accepting any new participants for the trial . All of the study results and information has been very positive so far. When I started this drug on 2/1/2020, my labs numbers were bad. Hemoglobin 8.1, now 14.3, WBC 2.5 now 4.5, platelets 29, now 105. My platelets were so low that I almost didn't get accepted into the trial. Abs lymphocytes now 1.6. I also heard two new trials are coming out for a similar type drug as Loxo. Quick FYI for those interested. Male 71 years old, Diagnosed 2009, 6 months of FCR 2010, 2015 Ibrutinib, 2018 Venclaxta, now LOXO-305. 11q del. C-481 mutation and I don't care to know what other blood abnormalities. Here is an article that I read between the lines on last year. investor.lilly.com/news-rel...

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steve5441 profile image
steve5441
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9 Replies
Jackpot profile image
Jackpot

Fantastic news! I am very happy for you. Time to celebrate. I love reading posts like this. 😊

Superdad3 profile image
Superdad3

Steve,

I have recently been following this new treatment and appreciate your update and success!

Jm954 profile image
Jm954Administrator

LOXO-305 offers so much, especially for patients with the BTK C481S-mediated resistance to Ibrutinib and I'm so pleased it has been spectacularly successful for you. :)

Jackie

UKfulloflife profile image
UKfulloflife

Brilliant news! I started on Loxo last May and have also had spectacular results. I've finally got my BMB scheduled for next week (postponed several times because of the Covid situation here) , to confirm I'm in remission, something that bloods, scans and physical exams have been indicating since before Christmas. I was in a dire state when I started on the trial, in fact my consultant was worried that (for a variety of reasons) he'd left treatment too late for me. He was so excited after my first scan that he rang me as soon as he had the results to share the news that my enormous spleen had - in 8 weeks - halved in size! This drug really does seem to be a game changer for some.

annmcgowan profile image
annmcgowan

Great to hear your wonderful news. Well done.

Ann

Ghounds profile image
Ghounds

I'm very pleased for you. Wishing you a long and healthy remission.

Dss123 profile image
Dss123

My oncologist told that he thinks there may be a new arm of the trial opening up soon with Luxo-305 plus venclexta for previously untreated patients. If this is the case, I plan to try and get in the trial. I think this may be a good option for a first treatment? Has anyone else heard about this possibly trial for untreated patients?

NaderE profile image
NaderE

Great news Steve. As you recall I’m about a month behind you. My numbers are improving close to normal and spleen shrank drastically but still enlarged. I look forward to catching up.

Rod71 profile image
Rod71

I’ll be starting loxo soon I’m excited thank you for sharing

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