Query about idealisib

Hello Everyone - good to see there is a support site like this on here. Tired of trying to find answers in the most logical of places!

My dad has had CLL for about four years now - first time around he had chemo and it put it into remission for about a year, he visited a herbalist and was feeling on top of the world but unfortunately his white count started going up again and the second time around we had to wait for trial drug (idealisib) problem is he has enlarged glands on his lungs and this most horrendous cough - the oncologist hopes (though didnt seem too bothered) that it would settle with the treatment - three weeks in and he's no better and in terrible form - he is so depressed - very hard to watch as he is not like this normally. He also is back to infection after infection - it seems to be directly hitting his immune system. So what I am wondering from anyone else's experience - do you know how long it takes for it to get into your system/start working ? did anyone else have these problems??

thanks for all and any advice - really appreciate it greatly

H

8 Replies

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  • Hopeful Len Keck will answer you soon... if he misses this, send him a private message. He as been on Idelalisib (Zydelig) for longer than anyone I know...and may have some insights...

    Have you talked about ibrutinib as an alternative?

    ~chris

  • Hi there. I know how your Dad must feel as I too have been in the situation of having the ever present cough and sinus infections. These had me feeling pretty damn miserable. Your question about Idelalisib. I have been on it now for seven months and it had an immediate impact and I felt better within a week and the progress has been amazing. Previous to this I had had just about every treatment option over a period of 13 years.

  • Hi Bantam,

    Your situation - is like mine (DX in 2002. and other Chemo treatments) - Idelalisib certainly makes us feel better - but we still have to be on our guard against infections.

    Marty

  • Hi Marty. You are correct about similarities, I was diagnosed in 2001,aged 40, and started treatment immediately. Chlorambucil for three months and then Fludarabine for six, success and remission until 2007. Since then I have had the full alphabet of treatments, including Radiotherapy. I did have the pleasure of a Platelet level of 1 during Campath. Towards the end of last year, after suffering a severe anaphylactic reaction, adrenaline injections etc, to Oftatumamab I thought my end was near. Idelisalib has certainly been a game changer for me. You are right about the infections, although I have found that they are not as debilitating as they were previously, and certainly not as often. I really do hope that I do not regret typing those words lol. Keep well.

    Gareth

  • Following a number of treatments my husband went on the trial of Idealisib combined with rituximab in December 2012. It was a blind trial so we did not know whether he had the drug or a placebo. The first round of rituximab was a problem but once he got over that episode he continued to improve and we enjoyed a couple of years of relatively normal life. Albeit he did and still has a chesty cough. Whilst on the treatment of idealisib he was given a low dose of antibiotics which did keep the cough under control. However, in Feb. of this year we were told that it was no longer being effective and the drug company stopped the trial. As you can imagine, we were devastated. When the drug was stopped his white count started to increase and we thought that was the end of any treatment. However, he was then offered a trial at Kings College - AP 196. He has to take two tablets once a day and a recent scan showed that the nodes in his chest have got smaller and the lymph glands in his neck have reduced in size. I personally believe that we are at a time where there are now a number of treatments being trialled that could lead CLL sufferers to be hopeful of the future. My husband is 75.

  • Hi "H" - I'm sorry to hear about your dad's problems -- I have been taking Idelalisib for just two years on a Clinical Trial. (My post for the six months of B + R plus I. can be found on here.)

    My Clinical Trial was a "Double blind trial" where there is a 50/50 chance of receiving Idelalisib or a placebo. (But blood results, after a month, clearly indicated I was taking the active drug.)

    Like your dad, my immune system was severely compromised by the chemotherapy and whilst I have received IVIG - (polyvalent, IgG antibodies extracted from blood.) to boost my immune system - I still am susceptible to infections - mainly warts, shingles, coughs, blocked nose, ......

    Like YOU -- my wife notices these changes and combined with my Oncologist / Trial nurse each problem is investigated and treated.

    Like now with a persistent cough, my scan has identified "something" in my lungs - so ten days ago I had a Bronchoscopy (Camera inside of the airways / lungs.) - and am awaiting the results of this.

    Obviously I am only a patient.... but I was told that Idelalisib "squeezes" all the nodes in my body into the blood stream (Sudden increase in Lymphocyte count.) where my immune system attacks the nasty cells !!!!

    So rather than hope that Idelalisib will solve "all" I think you need to highlight the infections / problems more and get them sorted out -- separately from your chemotherapy treatment.

    Meanwhile, I look forward to reading Len K response - as he is far more qualified to answer.

    May your God be with you.

    Marty

  • Thank you all so much-here's to a brighter future for everyone

  • Could his respiratory issues be from the idelalisib ? Pneumonia, cough, pneumonitus to name a few. If he comes off the drug and his lungs get well you will have your answer unfortunately.

    Jeff

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