Ibrutinib and odd side effects

[KevinCLLITP]

I have had CLL and ITP for almost 8 years now. My first year I was not treated but early in the second I had my first Rituxan, which was well tolerated but caused an infected cyst on the end of my tailbone which required surgery and three month convalescence. A second Rituxan was done in 2018 with another resulting cyst in the groin which caused bloody urine and pussy Semen etc.

In 2013 and part of 2014 I was on NPlate and then Promacta for ITP which really didn’t do very much for my problem. I got very sick with CLL and entered a clinical trial in June 2014 with Zydelig/idealisib and ofatumumab. The dosage of the drug was initially too high and several of us ended up hospitalized with serious liver complications, but after a month or so it was sorted out. However, I spent the next nine months almost flat on my back from one monitors, colitis, hepatic injury, kidney issues and the like. I lasted until early 2015 and stopped the trial. 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. My last serious event was in January 2019 when I crashed and became anemic for the first time. By April, I was forced onto Ibrutinib.

I have had serious bone aches and issues especially in large bones. Pelvic pain is great and it radiates down the leg. I have some numbness in legs that comes and goes and I have to be careful driving car as sometimes my right foot goes numb. My toes are in constant motion and are quite tingly and numb themselves.

I have a chronic cough with sputum which seems to be pnemonitis again to me, and my CT scans show ground glass opacity which would probably suggest swelling in the lobes from the Ibrutinib. I am also beginning to have some problems with nail beds on hands and toes, which previously had some toenail fungus have gone kind of on overdrive, ruining $2k of laser treatments on the nails.

There are several other rather odd reactions happening which I have noticed in the literature which are due to Ibrutinib, the most recent of which is Neutropenia. I was given Neulasta two weeks ago and it nearly put me back in bed, and I had mouth sores, difficulty breathing, bone aches like on steroids, etc. My thyroid seems to be starting to go a bit crazy and my blood pressure is up by about 30 points, and I have gained about a dozen pounds in four months.

I am wondering if I am the poster child for drug side effects. I guess I am definitely one of the 40% who are prone, I am just wondering if I am one of the 1 in 4 who have to stop this drug.

Any similar experiences???

[duffymcgrif]

Wow - so sorry about all your issues. I've been on Imbruvica for two years now. Numbers are great. BUT, the first year was the absolute worst. If there are side affects, I think I got them on. My shins and forearms actually ached so bad I cried. Tylenol PM helped me to sleep. Of all side affects that I think was the worst. Thankfully only lasted about 2 weeks, then gone. Knock On Wood - I've been through all that phase (newby) and my 73 year old body has become adjusted to the meds. I'm just wondering how long anyone has been on this (in years). Hopefully your side affects will be short term also. Don't give up. Good Luck

[KevinCLLITP in reply to duffymcgrif]

I am hopefully mirroring a trial that is going to try and remove Ibrutinib after about 22 months. I guess there is a lot of discussion going on about long term usage and the requirements thereof, for ibrutinib, Venetoclax and a combination of the two. I am hoping to wean, which would come early in my 10 year after diagnosis, and if it doesnt work, then so be it. Oh, btw, I am on 420 mg once a day.

[duffymcgrif in reply to KevinCLLITP]

I take same dosage and going into my third year. BUT THE COST is awful. How can medicines be so expensive? I feel so sorry for the people who can't get the resources/help that some of us get. I wonder how much longer I'll get the the assistance I'm getting now? At age 73, never imagined I would get CLL. Never even heard of it before. What in the world did I do to get this? So many questions unanswered. But, thanks again for sharing.