LOXO-305 UPDATE 7 CYCLES COMPLETE

[steve5441]

A while back I posted some results from my LOXO-305 clinical trial. I am now into my 8th 28 day cycle with no side effects and some good lab results. Almost all of my blood work is normal, with the exception of my platelets, 106, and my neutrophils,2.2. Lymphocytes are still a bit high but trending down. Bottom line is that I feel great and can do anything I like. Eleven years and my fourth treatment, I feel like a veteran. Dr Mato and Dr Koffman just posted a video of the LOXO trial. I have had prior treatments with FCR, Ibrutinib and Venclaxta.

[DRM18]

Excellent, Steve! Exciting! Please keep posting about this.

But: an ANC of 2.2 is firmly within the normal range, no? My lab's low normal is 1.5.

--Dave

[steve5441 in reply to DRM18]

Dave, you are correct. Mine are within range. Thanks

[Canuck901]

Thanks for sharing your experiences

Excellent to hear Loxo 305’ is working well !

Stay healthy and safe

[steve5441 in reply to Canuck901]

Thank you very much.

[NaderE]

Great news Steve! I’m also on LOXO-305, 7th cycle. All numbers are improving. My WBC is finally in normal range after nearly three years. Still much enlarged spleen and hemoglobin under 10. Looking forward to improving numbers. Thanks for sharing and providing positive news. Nader

[steve5441 in reply to NaderE]

Thank you, and best of luck to you.

[steve5441 in reply to steve5441]

Nader, we are very close in out treatments timewise. During all of my treatments I have never had issues with enlarged organs or swollen nodes. Unfortunately, my CLL loves my bone marrow and always takes up residence there, sometimes it is hard to flush it out. My Dr, told me that the LOXO may make some of our blood counts lower. The best news is that you are tolerating the drug well and almost ALL of your counts are improving. Continued good results. Steve

[JigFettler Volunteer]

Thank you for your valuable, positive and optimistic post. Indeed you are a veteran. Experienced in the the CLL journey, a wise traveller.

Take care Steve. Stay safe and best wishes.

Jig

[steve5441 in reply to JigFettler]

Thanks Jig, especially for being a volunteer.

[Smakwater]

Keep it coming steve5441!

JM

[steve5441 in reply to Smakwater]

Thank you.

[bkoffman CLL CURE Hero]

Wishing you thee best, Good choice.

[steve5441 in reply to bkoffman]

Thank you very much Dr. Koffman. That is very encouraging coming from you.

[antonb]

Great !! is loxo-305 also oral intake ? can you give us more details...

[cllady01 Former Volunteer in reply to antonb]

Here is the clinical trial page---

clinicaltrials.gov/ct2/show...

there are several trials and listed in 20 locations.

[Mystic75]

Thank you, Steve, for posting this update. Very encouraging!

All the best to you and continued success on your treatment!

D.

[steve5441 in reply to Mystic75]

Thank you very much.

[Dahlia7]

My journey has paralleled yours Steve. LOXO is my 4th treatment with the same therapies as yours. I’m however only 2 weeks in withLOXO but feel great. Hope it continues. What dose are you taking? I am on 200mg daily. Best of Luck. Tony

[steve5441 in reply to Dahlia7]

Tony, I started with 300mg. which was the max dose at the time. I don't know if they have decided to increase the max to 400mg.or not. There was some talk of it back in January when I first got going. The first several weeks are the most test intensive of the study. Right now I am doing a Dr. visit and blood work every 4 weeks, then CT scans every other month. Covid really shut things down for quite some time, I never talked to my Dr. for three months, just televisits with the CNP. Getting blood work was a little challenging, I had to drive all of the way to my hospital just for the lab work, then I was allowed to do offsite testing. My last two visits have been in person. Best of luck to you also, I had another treatment option back in January, but this LOXO study seemed the the thing to do. If you ever need to ask a question of me about my treatment, please feel free. Steve

[Dahlia7 in reply to steve5441]

Thanks Steve. I also had the option for CAR-T but like you thought the LOXO study preferable. The first 2 weeks were certainly intense but I’ll be on the same schedule as you in 2 weeks. Lots of travel from Ohio to Texas. I was 11q deleted and unmutated so treatments have been a little more difficult. I really feel good now though. Stay in touch. Tony

[steve5441 in reply to Dahlia7]

Tony, I am also 11q deleted, not sure on any other bad prognosticators. I travel from Maryland to North Jersey. 250 miles RT, I always spend the prior night, during the first six weeks I would spend two nights. You must attend MDA. OK hang in there and do the best you can.

[Dahlia7 in reply to steve5441]

Thanks. Will do. Tony

[SusanBo]

My husband has been on the Loxo trial for a year now - this is the first time he has ever been able to reach a complete remission. No side effects, labs are perfect - doing great. He has had a very challenging road with his CLL and has been through several treatments prior to this - none of which has ever gotten to this point. The trial is challenging with regard to the required participation but the results are definitely worthwhile. No matter where the future takes us, it has already bought us a year of normal existence for which we are very grateful.

[Dahlia7 in reply to SusanBo]

Thanks for your encouraging words. It means so much.It’s so important to hear positive news. Please stay well. Tony

[steve5441 in reply to SusanBo]

That's really great news. Complete Remission is what we strive for. Steve

[antonb in reply to SusanBo]

complete remision both on Bone marrow and blood labs ?

[casanova]

Thank you Steve for posting and to everyone else adding their positive LOXO experience.

I too am a veteran of several treatments and currently well on mono Venetaclax,. However, there is always the niggle of when this treatment may start to fail as the others have. It is so good to know there may be another option should that day arise. Stay well.

Maureen UK

[steve5441 in reply to casanova]

Best of luck Maureen, there are other drugs in clinical trials also.

[casanova]

Thank you Steve. Whilst I am hopeful I continue to do well on Venetaclax, it is reassuring to know alternative treatments are still being trialed and may be available to me at some point . Thanks again.

Maureen UK