Experiences with

Zydelig

In 2014, FDA approved the first PI3K inhibitor, idelalisib (Zydelig®), to treat patients with relapsed follicular lymphoma. Copanlisib (Aliqopa} is now the second approved PI3K inhibitor.

I presume the biggest problems here were caused by Ofatumumab, although Zydelig is not a well tolerated drug. I was great for about 39 months until I started having some serious complications and bleeding events and had to have gall bladder removed.

I switched doctors after 8 years of recurring cll....imbruvica zydelig rhituxin with all plus others...just wasn’t working (for me). My new doctor was surprised that the old never did a bone marrow test (it doesn’t hurt like the old days).

Next I tried Zydelig which shortly made me very ill - I vomited it back up. This was followed by a week in the hospital with pneumonia, staff, and UTI. I was off of Imbruvia for three months. I have a "harbinger" node in back of my right ear which lets me know when the nodes are swollen.

In the past Idelalisib (Zydelig) was found to increase the risk of Pneumocystis in previously untreated patients. Now Ibrutinib has also been linked, fortunately prophylaxis is available and risks may be evaluated based on CD-4 T-cell levels.

O'Brien, MD Chemotherapy is becoming less of a priority in the treatment paradigm of chronic lymphocytic leukemia (CLL) with the addition of the FDA-approved novel agents ibrutinib (Imbruvica), idelalisib (Zydelig), and venetoclax (Venclexta), explained Susan M. O’Brien, MD.

ended up with fever for 2 weeks and they took me off. been close to a year and still have trouble breathing to the point i cant sleep at night. anyway i've been on zydelig w/ rhituxin for 3 months and now my liver is having issues so i'm off that as of the weekend...Whats next.....

Whilst I realise that the CLL is slowly returning - my Oncologist reassures me that new drugs similar to Zydelig will be available to me “as and when” I will need them - even perhaps another Clinical Trial.

After a year on Imbruvica he was taken off because of the pathology report and now trying Zydelig alone. Started 2 days ago.

I've officially been taken off zydelig after 27 months! I think it might be some kind of record. The side effects were starting to multiply almost daily. Of course I had loose bowels for many months but I learned to cope. Five months ago I got a cough that wouldn't go away.

Here is the CLL journey of my father: October 2015- Dx with mild CLL (watch and wait) February 2016- started FCR due to B symptoms (8 cycles) September 2016- PR November 2016- CLL back and trial with Venetoclax April 2017- Leg lymph node growing and Zydelig June 2017- PCP caused by Zydelig July 2017

Also I forgot about my e mail because I got pneumonitis from zydelig was in the hospital getting three different antibiotics for 2 weeks and when that didn`t resolve the "problem" then I was sent to a larger hospital to have a lung biopsy to take a culture because they THOUGHT they saw something at

All because of zydelig!!

I am still suffering pnemonitis from zydelig and have to go back to lung specialist because I am not improving. I know I can't have any treatment now because I am so sick. So I am hanging out coughing my lungs out and have to go back to lung specialist because of this.

Curious question : I was not told at what times to take separate doses. The Specialty Pharmacy said 9-10 hours apart so I am doing 8am and 5pm. Did your doc or trial tell you how far apart to take each tablet?

I landed in limbo, with no apparent treatment, hence my admittance to a trial with Zydelig. I've been living more or less normally for almost two years. If anyone out there is using this drug, I'd love to hear from you. Dave in Canada

[/i] [i]Limitation of Use[/i] [i] is not indicated and is not recommended for first line treatment of patients with CLL.

I'm one of the lucky ones whose NHL can be held in check with Zydelig. This year may be the one which brings yet another level of treatment to many of us. I'm putting my money on immunotherapy to give my body a fresh, cancer-free start. Happy New Year everyone.

I agreed to go on zydelig in May of 2015. I've been healthy ever since. It's a wonder drug for me although the cost to my med plan is non-sustainable if I continue for another year of so. Each month drains $5460 from my life time allowance!

(Idelalisib (Zydelig )is actually FDA approved in conjunction with 8 doses of Rituxan). Obinutuzumab is an injection which runs over about 4-6 hours. Have any of you tried these treatments? I hope everyone is taking care of themselves!