My husband was on Idealisib for 8 months with very good results, but in that 8th month he developed colitis. He was put on a steroid for 30 days and colitis was resolved. The Idealisib was reintroduced twice with terrible results of vomiting and extreme diarrhea. He has been drug free since that time and the CLL is progressing quickly. He will be starting Ibrutinib tomorrow. We are hoping he will be able to tolerate it as we are approaching no other alternatives.
Has any one else been this route?
Thank you in advance for any feedback.
Sue
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Sjustus
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I am very sorry to hear about your husband's reaction to Idelaslib - but encouraged that his Doctors have the foresight to try another type of inhibitor - which although "similar" - maybe a better drug for him.
I have also been on Idelaslib since July 2013 - and have had milder reactions to this drug (Shingles, Warts, diarrhea & possible lung infection.) which with exception of the lung infection have been manageable.
Eight weeks ago I was taken off Idelaslib for a month, whilst the lung infection was being investigated - but in that month the CT Scans showed a marked increase in nodes and the blood levels changed.
Next week I see my Oncologist - to see what changes have occurred since returning to Idelaslib for a month ....
I know it is never easy with CLL and its complication - but I find a positive outlook can help .... as the bible says...
Proverb 18:14
A person’s spirit can sustain him through illness.
I too had it pretty easy on idelalisib till 5 months on. I developed a persistent cough without relief from antibiotics.
Pneumonia came on and after coming off the drug, I got well.
Back on after 2 weeks being off and got sick again 3 months later. I'm not saying it's the pill because I did finally get well but was suspicious. The pill wasn't held this time.
This past month I started with a sinus infection with a cough lasting a month. Antibiotics didn't clear it. After an ER visit last week showed elevated liver enzymes, the pill was stopped. My CT and CXR's with blood cultures were all negative for pneumonitus or infection as was the viral swab. Two weeks off the pill and I feel like a million bucks.
I see my hematologist in two weeks to see my fate. Sinus infections are not considered a grade 3 AE so I'll probably get one more shot at the pill.
My fear is once failing idelalisib that I will be excluded from trials of the newer and better tolerated P13K inhibitors. The other fear is of course disease progression.
I'll keep you guys posted. All told I've been on idelalisib for about 13 months.
I wish you well Jeff. This road of uncertainty is scary, especially when you are approaching the end of the drug line. We are there. This is our 3rd go around since January 2012 with different drugs.
We all know that CLL is a difficult journey with lots of potholes on the way - but I have always found that looking towards the future is encouraging - like the other day I focused on the "Onclive Link" and in particular Dr Jennifer R Brown's comments:
What is on the horizon for CLL?
"The next inhibitor that is likely to be approved is venetoclax (ABT-199), which is a Bcl-2 inhibitor. This drug is in very advanced clinical development and has shown excellent response rates in the order of 80% to 90% in relapsed refractory CLL. Complete remission rates from 25% to 40% were observed in the combination study with rituximab. It is somewhat unique in its ability to induce complete remissions compared to other Bcl-2 inhibitors. It is in a number of registration trials, as well as combination therapy trials.."
There is also so much support from the CLLers in this Association to each other and throughout the Bible people are inspired when they are encouraged.
Hebrews 10 :24 And let us consider one another so as to incite to love and fine works, 25 not forsaking our meeting together, as some have the custom, but encouraging one another, and all the more so as you see the day drawing near.
hi sue, going same thing with my husband .We are waiting to see if he can get funding for iburtinib ,seems hopeful.His cll affects his lungs and he is waiting to have them drain then sealed .Then hopefully new meds will give us some peace for some time . the last 18 months has been terrible. lin
Hi Lin, I feel your pain. This journey is a rough one. My husband is only 57 too. So far, Ibrutinib is doing good. It has only been 4 weeks but see a big difference. What I read about it is if you do have to stop you better have something else in place, but I feel that was the same coming off Idealisib. It all came back very quick. At this point he is on the last working drug, so let's hope he can stay on it. Sue
let me no how it goes, will be thinking of you both. I think we will be about a month behind you and your post give me confided, I am so glad to have this site, the support and help is invaluable thank -you all from the bottom of my heart .lin
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