Is anyone on Duvelisib?: Is anyone on Duvelisib... - CLL Support

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Is anyone on Duvelisib?

Aliona06 profile image
10 Replies

Is anyone on Duvelisib? Can you, please share your experience. Unfortunately my father’s Venclexta + Rituxan treatment is not working anymore. The doctor is saying that Duvelisib is his only option now. Thank you.

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Aliona06 profile image
Aliona06
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Smith123456 profile image
Smith123456

might be time for reduced intensity stem cell transplant

Aliona06 profile image
Aliona06 in reply to Smith123456

Dr is saying that he is too sick for the transplant. Did not mention the reduced intensity one, I'll definitely question him about it. Thank you.

cllady01 profile image
cllady01Former Volunteer

Aliona06. Here is a posting by Jm954 listing an article of interest to your father's situation.

healthunlocked.com/cllsuppo...

Aliona06 profile image
Aliona06 in reply to cllady01

Yes, I saw it, thank you. I searched everywhere on the internet for any Duvelisib patient's stories, experiences and I'm very surprised how little there is. I guess I'm looking for some reassurance. Knowing how potent this medication is and how serious side effects are, I was hoping for someone to say that it does its job and it keeps them alive. It's been approved for over two years now, but almost no patient's reviews available.

Smith123456 profile image
Smith123456 in reply to Aliona06

blog.dana-farber.org/insigh...

Aliona06 profile image
Aliona06 in reply to Smith123456

Thank you!

Smith123456 profile image
Smith123456 in reply to Aliona06

how about loxo-305

Aliona06 profile image
Aliona06 in reply to Smith123456

Thank you, we’ll bring it up to the doctor. I wish there’s one in Los Angeles, the closest hospital where this trial is being done is in San Francisco.

Billhere profile image
Billhere

Please take a few minutes to visit CLLsociety.org

A lot of videos and information on each of the drugs.

There are a lot of options out there still and just because he’s not responsive to one thing or one combination does not mean you should lose hope for a good outcome.

I’m always heartened to see children’s, spouses out there looking for solutions.

Aliona06 profile image
Aliona06 in reply to Billhere

Thank you, Billhere

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