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.
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cajunjeff
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I'm so happy for you Jeff may your results keep staying afloat and improve to the point of umrd negative. I hope to see that one day, cll is no longer a killer.
Thanks sushi, my sister Cll-Er. 😛. I hope to get mrd negative but Thompson reinforced for me the end game is survival. He could add venetoclax now and get me mrd negative probably, but for how long? Might I go longer riding ibrutinib out and then switching? No one really knows. Thanks for the thoughts. Let’s revisit this post in twenty years.
I have to say that I received my blood test from today and it is perfect! I have taken Ibutinib since day one(1 year ago) Started with what 3 capsules so 420mg then after a few month went to two cuz of my side effects. I don’t know if this is why I am lucky but I have always been active I walk an average of 1hr a day exercise with light weights and stay active and practice breathing through my abdomen to stay calm. I try to stay positive and laugh and make up humor in my mind. Love life and beware of getting down. I remember “nobody gets out alive “ so whatever gets you have a good ride. Maybe if were lucky we are 100 yrs old a just didn’t wake up from an afternoon nap 🥰 I
Congratulations on your two year anniversary and promising blood results Jeff. Put that mini bar to good use. You deserve it! Cheers!
I too had the same good markers, and was supposed to do good with FCR but turned out to be allergic to one of the FCR drugs. Oh well, at least we’re still here to tell our tale...:).
Hi Jeff, hi Jackie, I agree big time that this is firstly a very encouraging report, Jeff, and am extremely happy that so far Ibrutinib is a good journey for you, as it is for many.
And I also totally agree that it is great to see that some folks still do well after 9 years....I might need to start treatment this summer and hope that it will be a similarly smooth journey as for many of you.
Not good Peggy, not good at all. I am paying today for last nights fun. No regrets though, I was quite relieved reading my results. Even though I had every reason to believe my numbers would improve, it had been six months since my last labs and I was a tad anxious awaiting my results. I plan on raiding my minibar to celebrate continuing progress in the future.
It is so great to read stories like yours JEFF as I am starting Acalabrutinib on Monday with trepidation and hope for it to work with manageable side effects.
Glad to hear Dr Thompson say don’t rock the boat and stick with what’s working. I am almost 3 years on ibrutinib, doing great and no real side effects. I have thought about asking about adding V, but figure if it ain’t broke, don’t fix it. I will probably ride this until something changes.
Absolutely Madison. At the moment probably most people would then reach for venetoclax plus Rituximab (or maybe obinituzimab). There Are also lots of other treatments in various stages of development.
Great report CJ ....thank you, hearing how our CLL brothers and sisters fare through varying treatments is invaluable.
But most of all I’m so pleased to hear that things for you continue to move in the right direction....long may this continue ....until all minibars everywhere are drunk dry 🤪
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