UK CLL Forum, UKCLLFORUM

Idelalisib

Topic Made On: Oct 15, 2014 11:33am
Domineys

Offline
Gender: Female
Posts: 14
Diagnosed in 20001, I am about to start treatment again. One of the drugs my consultant is considering is Idelalisib, which has recently been apporved in the UK. I've seen a lot about Ibrutinib but does anyone have experience of Idelalisib or know how it it works?

Good luck to all who are undergoing treatment!




Replied On: Oct 17, 2014 07:26pm
tewksboy53

Offline
Gender: Male
Posts: 3
Hi Domineys. I was taking Idelalisib from September 2013 thru to May 2014.
This was part of a trial along with 8 concecutive weeks followed by once a month for 4 months of Ofatumamab. The results were very good and i had no side effects until May this year. There is only major problem which is very rare but unfortunately for me i developed Colitis. I was not able once this was resolved to go back on the drug as there was a high chance it would recure. It works much the same way as Ibrutinib as an inhibitor to stop cancer cells from forming. I think from memory it is a P3k inhibitor. I wish you well but you would have to be incredibly unlucky to have my problem. It was perfoming a fantastic job until the problem. I hope this helps. Regards Mark.



Replied On: Oct 18, 2014 01:55pm
Domineys

Offline
Gender: Female
Posts: 14
Hi Mark. Thanks for your reply. It's encouraging to hear Idelalisib worked well for you, at least for a while, but I'm sorry you were unable to continue with it. I hope there is something else suitable for you. I appreciate you being honest about potential side effects - even if they are rare - we're all different and there is no magic bullet! With all best wishes, Ann.




You must be logged in to post a comment. Login Here