My first 36 hours of life on Ibrutinib (PCI-32765)
I took the first 3 specially prepared by the pharmacy gray capsules of ibrutinib 140 mg each for a total of 420 mg yesterday at 11:15AM at the infusion center, except I had no infusion. That was a treat. To go to the cancer center and sit in an infusion chair, but get no IV.
I did have blood drawn, and except for another mild blip in the liver function tests and my mild anemia, all remains normal. I was examined and questioned repeatedly (do you have rashes, fevers, GI issues, fatigue, pain, neuropathies and so on?) and issued instructions and given a diary to complete and waited around for about 2 hours. The PA (I didn't see Dr. Byrd again) had said almost nothing negative about ibrutinib and proffered glowing reports of all the successful patients in the trial. Seems like almost everyone responds and almost no-one has any major problems.
Then I was out of there with the magic pills in my stomach and on their way to by blood stream and into my cancerous B cells to block their malignant communications and begin the process of healing.
The earth didn't shake, bells didn't ring, and angels weren't heard singing, but it was still pretty special. Had a wonderful meal and a long nap.
Took the next three pills this morning, and I have nothing to report. No missing in action lymph nodes, no sudden surge of health, but no diarrhea or rashes or bruises or any of the side effects I was told to possibly expect. Nothing positive or negative. If there was a placebo control, I would think I got it.
A non-event and I am just fine with that.
Many people get a very fast response with ibrutinib, so I hoping and expecting by the time of my appointment next week, my nodes will be at least less firm, if not significantly smaller. My white count will likely have climbed as all those clonal B cells leave the protection of the germinal centers and enter the dangerous freeway of blood where their life expectancy is much shorter.. That is what the PA seems to be anticipating. That would mean I am one of the many responding.
But for now, the game changing ibrutinib, like the actual infusion of my transplant, was a bit anti-climatic. Wonderful, satisfying, but not very dramatic.
The real positive excitement will happen soon enough.
I did have blood drawn, and except for another mild blip in the liver function tests and my mild anemia, all remains normal. I was examined and questioned repeatedly (do you have rashes, fevers, GI issues, fatigue, pain, neuropathies and so on?) and issued instructions and given a diary to complete and waited around for about 2 hours. The PA (I didn't see Dr. Byrd again) had said almost nothing negative about ibrutinib and proffered glowing reports of all the successful patients in the trial. Seems like almost everyone responds and almost no-one has any major problems.
Then I was out of there with the magic pills in my stomach and on their way to by blood stream and into my cancerous B cells to block their malignant communications and begin the process of healing.
The earth didn't shake, bells didn't ring, and angels weren't heard singing, but it was still pretty special. Had a wonderful meal and a long nap.
Took the next three pills this morning, and I have nothing to report. No missing in action lymph nodes, no sudden surge of health, but no diarrhea or rashes or bruises or any of the side effects I was told to possibly expect. Nothing positive or negative. If there was a placebo control, I would think I got it.
A non-event and I am just fine with that.
Many people get a very fast response with ibrutinib, so I hoping and expecting by the time of my appointment next week, my nodes will be at least less firm, if not significantly smaller. My white count will likely have climbed as all those clonal B cells leave the protection of the germinal centers and enter the dangerous freeway of blood where their life expectancy is much shorter.. That is what the PA seems to be anticipating. That would mean I am one of the many responding.
But for now, the game changing ibrutinib, like the actual infusion of my transplant, was a bit anti-climatic. Wonderful, satisfying, but not very dramatic.
The real positive excitement will happen soon enough.
Labels: Clinical Trial NCT01217749, ibrutinib, PCI-32765
posted by Brian Koffman at
11:32 PM
5 Comments:
Great to hear Brian - have wondered how you are going more than once today. I've had my own good news - saw my specialist today and one of my sisters is a full donor match so it means that is an option down the track for me. Hopefully PCI 32765 is a much safer one though...can't wait to hear that those nodes of yours are disappearing. Enjoy resting knowing that something non toxic is now doing the legwork for you. Best wishes, Deborah
Brian
So very happy that initially, you had no reactions. Im hoping that's the case for you throughout this journey. You deserve to be well and beat this . Always amazed at your take charge attitude and with Patty by your side, you both can conquer this.
Brian
So excited for you to actually start this drug. Glad no side effects as of now. You are truly a warrior and with Patty at your side, there's nothing you can't conquer. Hope to see you both when you get home. Wanda
Good Luck Brian, will be thinking of you and anticipating your good results.
We are off to Marrakesh next week to celebrate our Silver Wedding and then I have my treatment when we get back.
love from very very wet London
Susan
Interesting non-event Brian. Good news. Is there a follow up for the first week/month, etc?
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