Idelalisib

[42828]

Has anybody got experience with idelalisib.

Many thanks ☺️

[lankisterguy Volunteer]

Hi 42828,

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I took Idelalisib (& Rituxan) on a Phase 3 clinical trial starting in Dec 2012 and stayed on it for 30 months with few side effects (mostly short bouts ~ 1hour several times per month of very loose bowels). In two months I was in CR (Complete Remission) with normal bloods and a normal CT Scan of my spleen & nodes, at 24 months my MRD was 0.08%. But by 30 months my MRD was over 1%, so we stopped the trial and switched to Ibrutinib.

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My impression is that most CLL experts will use Idelalisib (and it's close cousins like Umbralisib) as a 3rd choice after Ibrutinib or Acalabrutinib and Venetoclax.

In several clinical trials the OS (Overall Survival) on the *lisibs have slightly poorer OS, and may indicate some increased problems with lung infections, especially the fungal pneumonia called Pneumocystis. Some of my many CT Scans on the trial showed "Ground Glass Opacity" which later was connected with potential Pneumocystis infections.

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If you have other questions, I can try to dig up references and links to any of the above.

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Lwn

[42828 in reply to lankisterguy]

Thank you my friend. That's excellent knowledge.

[Jm954 Administrator]

Your profile doesn't say much, just wondering why you're considering it?

Jackie

[HopeME in reply to Jm954]

If you look back at his replies you will find this comment he wrote 3-years ago:

Treated with 6xFCR (floudarabin, Retuximab and cyclophosphamide). After that I had a 4 month remission which was quick. It was found to have come back with a P53 deletion so I went on Ibrutinib in 2015. From there I had a sibling allogenic bone marrow transplant in September 2016.

In August 2017 I had another relapse and so commenced Venetoclax.

Now I'm back on Ibrutinib and keeping my fingers crossed ha .

[42828 in reply to Jm954]

Hi Jackie, yeah, I've passed through ibrutin also venetoclax. Both now, after a long time, have stopped being affective. I've been having a tussle with CLL since 2007. My options are now getting very limited.

Kind regards. Tony

[HopeME in reply to 42828]

Hang in there Tony. I hope things turn your way and the Idealisib works. I wish I had a quick and easy solution for you. Have a good weekend.

Mark

[42828 in reply to HopeME]

Thanks Mark

[Shefflass]

Hi. I have just finished taking Idelalisib. I was on it 2½ years as at the time Ibrutinib and Venetoclax weren't an option due to other health problems. It initially caused slightly elevated liver enzymes but this caused me no problems and resolved itself in a few weeks with no intervetion. I also had a loose bowel problem. But it was liveable with and eventually went away after I had a 4 week break from Idelalisib when I had an infection. I had no other side effects and felt well. I really hope it works well for you too. Gillian

[42828 in reply to Shefflass]

Gillian, that's comforting for me to hear.Many thanks for your input.

[Jph02006]

Hi You might get more personal experiences if you locked the discussion to this community

John

[ViPOR]

I took Idelalisib as a bridge to my CAR T in 2015. I was getting CAR T for my aggressive Follicular NHL. I did really well with Idelalisib and do not remember any side effects. It did so well that it put me into a short CR. But then the FNHL came back and I got my CAR T. It did help me to have a low tumor burden going into my CAR T.

[42828 in reply to ViPOR]

Many thanks for that ViPOR, very reassuring. I've asked my haematologist about Car-T treatment and was told that, at this moment in time, Car-T is not available to CLL patients. However, that could well change in the next year or two as the development of Car-T progresses.Many thanks again.

Kind regards Tony

[Nicebaps]

Hi

I'm also in the UK. I started Idela yesterday and was just browsing to see what other people had said about it. I'm told that it's not been regularly used for a few years as better inhibitors have come along.

I'd be interested to see how you get on with it if you've been prescribed it

[42828 in reply to Nicebaps]

Will do my friend.I think I will be starting it very soon now😊