Chimming in: Dear All, this is my first time... - CLL Support

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Chimming in

KuluJimmi profile image
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Dear All, this is my first time writing and an introduction. I am glad to be taking this time to chim in to the conversation. I plan to be more specific next time i write, but at this point I'd like to ask if anyone is in the Acalabrutinib, Venetoclax, Obintuzumab clinical trial at Dana Farber. I have 17p and am being recommended for the trial. I have an appointment at Dana Farber tomorrow to go over the details. I am a 64 years old male, fully emgaged in my career, I'm at the gym 7 days a week, 3 of those days are in a cross fit class. Other than the CLL 17p, I am strong, healthy and fully engaged in my life. Thank you!!!

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KuluJimmi profile image
KuluJimmi
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cajunjeff profile image
cajunjeff

Kulu, I am not in the trial, but it’s hard to imagine a better combination than those three drugs. Venetoclax and acalabrutinib are top of their class inhibitors with different mechanisms of action that should give Cll no where to hide. Obinutuzimab is probably the best monoclonal antibody out there.

No one knows what combination of these exciting drugs will work best. It’s logical to think, though, that a combination that combines the best drugs will be very effective. Sounds like a great trial to me.

Murzik profile image
Murzik

Hi Kulu!! I am not due treatment at the moment but trying to be very current.

If I needed treatment now I would run to DF. That is the best option in trials in USA for me. Good luck with your decision, G.

PlanetaryKim profile image
PlanetaryKim

Hi Kulujimmi. Welcome. That trial with the triple combo you mention is a super combo, as CajunJeff has said.

kim

LovecuresCLL profile image
LovecuresCLL

Memorial Sloan Kettering arguably one of the top cancer center in the States with one of the best leukemia departments recommended a combo that is similar but with Zanubrutinib instead of Acalabrutinib. I would have liked to be on that triple combo myself except for my horrible skin.

I think you have an excellent triple combo....maybe even the “cure” but they don’t have enough data yet.

I am on O plus V double combo and it is going extremely well so far. I am 62.

I think being a fit person is going to be a great benefit to you on your journey. You are lucky to be starting your journey with that triple combo. There will be bumps in the road from time to time and maybe even set backs, but it is far better now than a decade ago. Rest assured.

Based on my own research to make my own treatment decision, I think you have the best combo for your mutation and age. I don’t have all your risk factors but based on the information I have from consulting at three major USA centers, it is your best bet.

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