I find reading about the experience of others on the forum about their treatment experiences has been enormously helpful to me. Treatment is the big boogeyman for many of us and it helps to see how people work through. So I thought I would return the many favors and report on my two year ibrutinib anniversary.
By way of background I was diagnosed in 2016 with 13q mutated Cll. Sounds great, right? Mutated 13q are the best markers we can have and predicts an indolent course of Cll. My Cll has been anything but indolent. I was one of the unlucky 15 % to get hemolytic anemia. My wbc raced up to 250.
Because I am 13q mutated fcr was always in the discussion with me. My doctor, Dr Keating, was a founder of fcr therapy. But fcr came off the table with my hemolytic anemia which contraindicates any fludarabine based treatment.
So two years ago I took my first three capsules of ibrutinib. Now it’s one 420mg tablet. Anyone that says swallowing that first pill was not scary is probably lying. I had read about every possible side effect and wondered which ones would afflict me.
I feel fortunate to report that overall ibrutinib has been a relatively easy drug for me. Better said, it’s been a miracle drug for me. I have cancer that is kept at bay by taking a pill a day that causes some transient and manageable diarrhea. One time the diarrhea was bad enough to stop ibrutinib a few days, it’s been better since I restarted. It did tick up my blood pressure which has always been borderline high. I take blood pressure meds now that have no side effects for me.
It had been six months since my last labs so I was more anxious than usual today to get my results. Would my wbc have risen suggesting resistance? Would my hemoglobin go down signaling a return of hemolysis?
Dr Keating retired so I now see Dr Thompson. I guess I am stuck with Aussie doctors now. Like Keating, Thompson never rushes me taking time to answer all my questions. And my labs were good. Whew.
My wbc went from 18 k to 13 k. Many people on ibrutinib have their wbc normalize in a few months. Mine is high two years out. No worries, says Thompson, this is typical with 13 q Cll and not a bad predictor.
My hemoglobin was up to 15.9. It was 7 at its worst. My platelets were stable in low normal range. At worst they were at 80.
I had a few other numbers a bit off normal, no big deal. I asked Dr Thompson if resistance to ibrutinib is inevitable and he thinks for some it’s not. He has patients nine years out still on ibrutinib who had high risk Cll.
I thought he would add venetoclax, that was always Keating’s plan for me. Thompson wants to wait for FDA approval. Venetoclax has some approval now, but not frontline with ibrutinib. Dr Thompson thinks I should not rock the boat now and that waiting to add venetoclax while Ibrutinib works it’s magic might even be advantageous.
Having Cll sucks big time. Today I am grateful that I have a serious blood cancer that has little impact on my current life and live in an era where through the miracles of science I take a pill that hunts and kills Cll cells. I am grateful to all my Cll brothers and sisters who joined clinical trials and paved the way for my treatment. I am mindful that some people are struggling with their Cll and that it’s still a killer. I am also mindful not everyone has the treatment options I do and I hope for a time where everyone has access to the best Cll drugs.
So that’s my report. It’s Friday night and I am stuck in Houston. I have decided that to celebrate my results I am going to drink the minbar in my room dry. I’ll save the little bottle of cherry vodka for last. Yuck.
Treatment....or not ???
Dr Michael Keating's Story - Taking CLL Therapies From Bedside to Community
FCR versus Ibrutinib
