Idelalisib - has anybody had experience of this drug?

Hi, I'm new to HealthUnlocked and have been reading posts about Ibutrinb with interest - very grateful to contribuors whose posts have been very informative. I have a long history of NHL and CLL, now recalcitrant. My consultant tells me that Idelalisib has recently been licensed for use in the UK and works similarly to Ibutrinib. Does anyone have experience of Idelalisib?

6 Replies

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  • You might ask on the CLL Forum... cllforum.com

    There are a few patients there who have been on idelalisib for some time. It works on the same signal pathway as Imbruvica (ibrutinib) but actually has a different target, so you can't compare the two, in regards to things like dose, method of action, side effects etc.

    If you wish they are like apples and oranges, both fruit, but really not comparable...

    ~chris

  • Chris

    Thanks for such a swift response - will try the CLL forum.

    Best wishes

    Ann

  • I have been on Idelalisib (Zydelig) for 22 months via a clinical trial in the USA, in our trial Rituxan was also used and greatly shortened the time needed to resolve my high ALC/WBC and return nearly all blood levels to normal. I had none of the gastro/diarrhea issues experienced by about 20% of patients, I hear that most gastro problems eventually subside.

    My CLL expert knows Ibrutinib, Idelalisib and ACP 196 and ABT 199 and thinks they all can help most patients, if one does not work for an individual due to side effects, he switches to the next one. There is no good way to predict which will be best for you, so when treatment is needed, get the one that is available and covered by your insurance, then change to another if needed.

  • Thanks, it's good to hear Idelalisib is working well for you and your advice is sound. I know that side effects with any drug are a bit of a lottery for any individual. I've been pretty lucky in that respect, so far, but I do like to find out as much as I can about any drug I may be offered and particularly the potential outcome.

    It seems from your account that, like Ibrutinib, Idelalisib is taken over a long period of time - is an end date envisaged or do you take it from here on in -or until there's some contraindication? Thanks and best wishes.

  • Hi Carnoustie,

    The advantage to the new kinase drugs is that nearly all their side effects are reversible, unlike Chemo where many cause permanent irreversible damage.

    The down side is that the new drugs are not a cure, and some residual disease remains, so taking the drug daily, long term is the current thinking.

    There are some studies to see if a 2 or 3 drug combination can wipe out the residual CLL cells and give a long durable remission when the drugs are stopped, similar to the results of Chemo.

    We don't say cure, but a "durable" (multiple year) remission might be nice.

    Len

  • Hi Len

    Thanks, this is very encouraging and, yes, multiple years would be nice!

    All best wishes

    Ann

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