idelalisib

[CarenR]

Has anyone taken this for Nfl? If so, how is it and how are the side effects?

[wmay13241]

What treatment are you referring to CarenR?

[wmay13241]

Now I see you are talking about Idelalisib. As a bridge to CAR-T my wife took Idelalisib/rituximab for 14 months. This combination worked great for her. It took effect in a week and within a month she lost 30 pounds. She felt great and did not have any side effects. She was monitored closely with CBC, CMP and liver function tests - all of which were negative.

[CarenR in reply to wmay13241]

Ok, I was wondering about the side effects as they look very bad. I am also concerned that I am far away from my Doctor and it will be hard to get back and forth to do the testing. Why did she lose 30lbs from this drug?

[wmay13241 in reply to CarenR]

When my wife progressed following Ibrutinib she gained ~30 pounds. Some of the weight gain was from water accumulating in her chest and her abdomen. Plus she received a lot of saline IVs during her 9 days hospitalization when she relapsed. She lost the ~30 pounds within a months of starting the Idelalisib/rituximab. Not sure Idelalisib (PI3K) by itself would work as good. Read the side effects closely. Although my wife did not have side effects, some of them are quite serious. Her oncologist and chemo pharmacist were worried about liver problems (that my wife did not have).

There is also a new PI3K IV drug that may be of interest: PI3K Inhibitor Copanlisib Active in Relapsed/Refractory Lymphoma - See more at: : prnewswire.com/news-release...

[R16728]

I've been using idelalisib by itself for NHL for almost two years now. It's brought my life back to normal. Main side effect is a very changed bowel. Turns out there are lymphocytes in the bowel that are "thinned out" or eliminated by the drug. I deal with an ongoing "loose stool" problem and several toilet visits each day. It's a small price to pay for everything else staying normal. The downside is the high cost which is steadily consuming my life time allowance on my medical plan.