Had my quarterly check-up with Dr. Wierda (MD Anderson) and was informed that he he had discovered, as well as can be determined, that I am the last person in America and perhaps the world taking the 840mg/day dosage of ibrutinib. He's going to talk with Pharmacyclics to see if we can cut that back to the normal 420 the rest of the world is on.
Oh, well, at least we've determined you can overdose for at last 5 years and survive!
Looks like you're well named Lab_Rat in terms of being used for scientific research!
Glad to hear it hasn't caused adverse affects!
Newdawn
Hi Lab-Rat,
on the one hand it ist good to read, that even though extremely overdosed, the agent has not caused serious side-effects. On the other hand it seems surprising to me, that your doc only now informed you about the "world-wide-normal" dose, which is even described in the patient instruction leaflet.
But I got another question: You mentioned a period of 5 years. Since when has Imbruvica been admitted in your country? In Gemany only since 11/2104. However I wish you firthermore all the best living well despite your CLL and that cutting back will work.
I've known about the 420mg standard all along. I was, and am still, in one of the very first ibrutinib clinical trails. MD Anderson & Pharmacyclics took an early 2010 Phase 1 dosing trial and morphed it into a Phase 2 by adding additional subjects. The Phase 1 was at the time looking at both 420 and 840 doses. To get the FDA to go along they had to continue the dual dosing study and I was chosen for the latter -- partly, I believe, because I was untreated and fairly healthy at that point and statistically less likely to develop side effects, which would be unwanted in a Phase 2.
Since then bureaucratic inertia has kept it going. And it was part of the deal I agreed to, which includes a free supply of the drug.
I truly am a 2 legged Lab Rat.
PS - I didn't go into this unknowingly, I had special private counseling. I don't have a medical background but my late wife, who was still alive when I was diagnosed, was a research biochemist who spent most of her career studing blood system components. Including half a decade at MD Anderson in the 70's working on studies and drug development for blood cancers. So she gave me a better-than-layman's education on the topic.
Congratulations...5 years is amazing...Gives us all hope! I do hope you can lower your dose.
Well at least it's worked Lab-rat. Congratulations. Hope you can get the dose down and enjoy many years to come.
Peggy
Good news lab_rat. I just had my first visit with Dr Wierda last month after being diagnosed in 2015. I'm in w&w mode so no treatment necessary. I struggle with fatigue especially after meals so I'm trying to seek wisdom and experience in this forum.
Don't eat? 
Seriously, if you aren't so fatigued that it's impossible, just go for a brisk walk or find some other form of exercise that may lift you out of that fatigue state. Fatigue is such a common complaint with CLL that we have over 40 pages of posts specifically about it:
healthunlocked.com/search/f...
Hopefully you'll find some tips there that will help lessen your fatigue.
Neil
Just about to say that Neil... you beat me to it... 😄
Thank you for that tip years ago. I found it worked for me once I got over the worst of my fatigue by reducing my infection risk and bringing my vitamin D up into the normal range.
Lab_rat,
Your wife sounds like she took very good care of you. 👼🏻
Sorry for your loss.
Jeff
Slowly healing cuts - does honey offer some help
Does any science/research point to our body having a back up immune reaction, when our white blood cells stop doing their Jobs?Science or Snake Oil: can turmeric really shrink tumours, reduce pain and kill bacteria?
Medical update
Road to BMT...oops just got there (Day +250)
