Just went to my cll specialist for my 3 monthly check-in. I have been on Acalabrutinib for almost 2 years (22 months but who’s counting?) My numbers aren’t earth-shaking but they are nothing to be unhappy about. Most are just below normal with hemoglobin at near 130, platelets at 125 and ALC of 11. Severe neutropenia, the reason I started treatment, is “tenuously improved” (words of my specialist) at around 1.25 and over the magic 1.0 for the last 6 months or so.
I feel better than I have in years. I’m posting this for other people like me for whom treatment with a BTK inhibitor is very slow - improvement measured in years rather than months. My cll specialist advises remaining on Acalabrutinib until the disease progresses (ALC and WBC begins to rise rapidly). Hopefully that will be years away.
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Vizilo
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Thanks for sharing your encouraging news after nearly 2 years of Calquence/acalabrutinib monotherapy. CLL infiltration in the bone marrow can be hard to remove, then your need time for your bone marrow to heal, reflected in your blood counts to improve. You are on the up now; platelet around 120 are quite acceptable and I know how huge a relief it is to have neutrophil counts about 1.0. I hope that you can relax and enjoy life a bit more now.
Neil, thanks for the encouraging words. After the first year of disappointing numbers (both for me and the cll specialist), I reminded myself that all our cll paths are different. Not all of us are going to have “instant recoveries” after beginning treatment. But for a large number us, these treatments have made cll truly chronic, not unlike hypertension, high cholesterol or diabetes - kept at bay by daily pills, diet and exercise.
For me, reducing the risk of minor infections taking off (as occurred three years ago), is worth everything.
Neil, you are obviously very knowledgeable on CLL - and I am always interested in reading your comments.
I am a patient of Dr. Byrd and have been on Acalabrutinib for 2 years. I started treatment early as I was having some kidney issues. Initially I was going to do Acalabrutinib and Obinituzimab, but then COVID showed up and Dr. Byrd stopped the infusions after 2 rounds.
Fast forward and things are going great - and Dr. Byrd has been amazing. I can’t speak highly enough about him and his entire team. My numbers are great - pretty much back to normal. Dr. Byrd gave me an A+ this last visit.
I can’t say enough about the care I have received from Dr. Byrd at OSU and UC.
I'm not surprised to hear of your praise for Dr Byrd's care. He was one of the four recipients of the Cure HERO award at ASH 2018:
Honored at the event — which coincided with the annual conference of the American Society of Hematology — were John C. Byrd, M.D., a researcher and clinical specialist at the Ohio State University Comprehensive Cancer Center-James Cancer Hospital and Solove Research Institute who has helped develop novel drugs to treat CLL; Christopher Dwyer, host of the Facebook group Bad to the Bone — Living With CLL and founder of the CLL Canada informational website; Brian Koffman, M.D.C.M., a family doctor who has been diagnosed with CLL, runs a blog for patients and is co-founder of the CLL Society; and Lisa Minkove, honored posthumously for creating and running an international Facebook support group for women with CLL, small lymphocytic leukemia and non-Hodgkin lymphoma.
“I want to congratulate all the heroes,” Pagano said. “What you do, and what the people who support you do, makes the biggest difference in the world.”
Chris and Lisa were both members of our community, with Chris being the largest contributor to the entire HealthUnlocked site in his role as one of the founding volunteers of this community. healthunlocked.com/user/cll...
Dr Koffman started the CLL Society with his wife Patty and is also a community member.
Dr Byrd left the OSU for his current position, so that he could do more CLL research.
Dr. John Byrd Presented the Binet-Rai Medal Award at XIX International Workshop on Chronic Lymphocytic Leukemia (iwCLL)
Dr. John Byrd was presented the Binet-Rai Medal Award for his outstanding findings, which led to the use of BTK Inhibitors in almost every phase of CLL therapy.
Hang in there! I've been on ibrutinib for 8-1/2 years, and it's almost just another pill in my pill box. I was recently off ibrutinib for 2 weeks while I had the shingles. I restarted about a week ago with no problems. My numbers all look quite good now.
Lynn, hopefully my path will be not unlike yours. Interestingly, my cll specialist mentioned that if my slow improvement continues, he may consider taking a “holiday” from Acalabrutinib. I had always assumed that I would continue to take Acalabrutinib until it stopped working.
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Long Wait and Watch time
Watch and wait with CLL
Watch and wait but feeling rubbish :(
Watch and wait... but for what?
