On my last visit to Upenn, my blood counts were significantly higher and after 4 years on Calquence, it has stopped working. My specialist was hoping I’d make it thru January 2024 when they expect Pirto to approved for CLL, but that’s not likely.
I reached out to see if I qualified for Pirto under Compassionate Care as I am out of options, and Upenn contacted the Insurance Company and got it approved! Just waiting to hear back about co-pay assistance, but it’s likely I should be starting Pirto in the next week or two.
For those on Pirtobrutinib, what has your experience been? My specialist said I could get 2 years on the drug, because I am heavily treated and have bad markers, after that a clinical trial. Was a little disappointed to learn it’s effectiveness is so short, but who knows what other drugs may he approved in the next 2 years.
The CLL journey continues, 15 years and counting!
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ReneeSusan
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I was on the LOXO-305 trial at Sloan Kettering, it was a great drug with no side effects, for me. It lasted about 20 months, as I developed another btk mutation. There are other clinical trials out there , but you may have to travel to reach them. I was also a patient at Penn Medicine, but I had to commute to North Jersey to get in those trials. I am back at Penn and enrolled in a CAR-T trial that will start sometime in the next month or so, maybe you could just inquire about this if you are interested.
I’ve been on a Pirtobrutinib (Loxo 305) trial since Nov-2020 and the results have been absolutely perfect.
I was diagnosed with RAI Stage I, Trisomy 12, Zap-70 Positive, CD38 Positive CLL in October2013 and after a wait and watch period, In June 2017, my doctor started me on 420 Mg of Ibrutinib.
Ibrutinib was discontinued after 4 months after severe sporadic AFIB and 2 months later I was started on Acalabrutinib. The AFIB continued sporadically but after getting COVID in July 2020 the AFIB became permanent.
In SEPTEMBER 2020 AFIB was totally eliminated with an ABLATION PROCEDURE.
In NOVEMBER 2020 my doctor started me on the Pirtobrutinib trial and the results have been perfect. Since Pirtobrutinib was started, all labs are within the normal limits and no side effects have been felt.
In my experience, and almost after 3 years on it, I can definitely say that Pirtobrutinib is the best available drug to control CLL.
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6 Years W&W...
Would someone shed some light on a few questions regarding a continuous drop in ALC and the connection to lymphocyte % means? Thank you! 
I was diagnosed with Squamous Cell Carcinoma on my chin today.
