idealisib/treatment

[eggemma]

I have taken idealisib for the past 2 years. I had excellent results. Almost normal blood counts. Unfortunately I suffer from diarrhoea. Anybody had same experience?

Advice greatly appreciated. I am Swiss but reside in England

[Cllcanada Top Poster CURE Hero]

Yes... I have diarrhea and mild colitis... But since I only have 2/3s of a colon... diarrhea is a way of life... anyways... I'm special... 🙄

I use 1mg, half a tablet of Loperamide twice a day to keep explosions in check... Talk to your doctor, they may want to hold treatment for a few weeks to stablize things...

Just finishing my 7th month on Zydelig (idelalisib) and 8 rounds of rituxan... my absolute lymphocyte count [ALC] is in the 30K zone and platelets and Hgb are low range normal...

~chris

[eggemma in reply to Cllcanada]

Dear Chris, thank you so much for your reply. this is very appreciated.

kind regards Emma

[june65]

Hi. My husband was on Idelalisib for nearly 2 years when he started with diarrhoea, he was advised to stop taking the Idelalisib and diagnosed with colitis, which took 3 months of steroids to alleviate, he then tried the Idela at a reduced dose but the same thing happened, thankfully this time we were more vigilant and stopped it quicker, the symptoms are starting to settle now following another nearly 3 months of steroids. I would consult your haemotologist as soon as possible if I were you, as the longer it is left the harder it is to get under control. My husband was very sorry to have to come off this drug as he felt so good whilst taking it.

All the best

June

[eggemma in reply to june65]

Dear June, thank you so much. Where do you live? I felt very well until a month ago. I will consult my consultant if the symptoms do not stop. This is such a nuisance. kind regards Emma

[june65 in reply to eggemma]

Hi Emma. We live in North Wales. Which part of the UK are you in?

June

[spud2212]

Been on it 18 months.. apart from a few rashes all good. I've taken high fibre cereals to hopefully avoid any issues.. It's worked up to now

[MartyR]

Yes Eggemma, I have had the same experience as you with the side effects of Idelalisib.

With out repeating everything -- perhaps read my posts -- by putting the following in the search box -- top right hand corner.. "Complication, Complications, Complications" AND "CLL Treatment -- Give Your Body a rest." OR just search "MartyR"

Marty