I spoke with my specialist from Upenn today and she wants to switch me to pirtobrutinib once it receives FDA approval for CLL in a few weeks.
My questions are for those in clinical trials for pirtobrutinib. Any feedback is much appreciated as this will be my 5th treatment regimen and I’m a little anxious.
How did they start the dosing, ramp up or full dose to start and where, at home or hospital? Side effects you experienced initially and long term, especially gastrointestinal side effects? Has it made a positive difference in your nodes and blood counts compared to your prior treatment? Did you have hair loss, wright gain or loss?
Hoping this will be the drug that will give me (us) a long durable remission.
Thank you.
Renee
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ReneeSusan
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I was on LOXO 305 which is now approved as Pirtobrutinib for 16 cycles before it failed for me. I have been on 2 other drugs since for a total of 6 treatments. Pirtobrutinib was by far the the best treatment I had. There was no ramp up as I recall I had no side effects. I didn’t even know I was on treatment. It worked quickly and effectively. I hope you have a similar experience but have a much longer remission. Good luck. Tony
Dahlia7, thanks so much for the feedback! May I ask what treatment you’re on now? I have aggressive markers, unmutated, 11q, tp53, so I expect I’ll probably need, another treatment after Pirto. I usually get 18 months- 2 1/2 years before relapsing.
I too am 11q unmutaded. I was on LP-168 after LOXO but had a poor response. I am starting cycle 8 of MS 553 now and am responding but have developed peripheral neuropathy on it so I may be bridging with Obinatuzamab and have LP-118 on deck. It binds at a different site than venetoclax which I also failed after 16 cycles. After that a bispecific antibody perhaps. You’ll do well on the Pirtobrutinib I bet and have better options after that. Enjoy life. Tony
Tony, with my markers I would not be surprised if I have a short time to relapse as has been the dase with all the other treatments. I have pernicious anemia with iron deficiency now from stomach and intestinal inflammation and that causes malabsorption of nutrients and I’m assuming medications as well. I think the docs need to correct those issues so that I get the most benefit from the treatment. Also Wondering if I developed a new mutation from calquence.
The new treatment MS 553 is that still in clinical trial? What tyoe drug is that?
it works downstream of BTK. I’ve had more GI issues with it than any other treatment and the peripheral neuropathy is pretty bad. It’s the worst treatment for me by far. I’ll be glad to get off it unless the neuropathy miraculously resolves. I would not recommend this treatment to a friend. But we are all different and there certainly isn’t irrefutable cause and effort with these treatments. Tony
If the CLL is affecting the bowel, you won't be able to correct these issues until you start treating your CLL IMO. There is a member here with IBS type symptoms, who was deciding whether to get surgery for the bowel problems first or treat the CLL. The CLL was treated, the bowel problems resolved. They chose V&O. Can you do pirtobrutinib and O? You've progressed on monotherapies, perhaps tamping this down with a double regimen may be warranted. As may a CAR-T/SCT when stable. It seems your variant has gotten really aggressive, maybe you need to reset your bone marrow?
The O infusion is not oral, so no problems with absorption. You may want to consider an anti CD20 regimen for this reason, it will start affecting CLL immediately. As opposed to the generally slower effect of a BTK type drug. Some people respond to the oral BTK agents quickly, but not all. Plus you can assess if your bowel problems are resolving with the infusion, or worsening, before starting any oral agent.
I have been in treatment on and off for 15 years and GI issues got worse as time goes by. I am presently on calquence. Had venetoclax fot 1 year and that was the worst. Plus I developed tp53 mutation after that. Already had Rituxan CD 20 monoclonal antibody for 14 months and cll returned. My specialist does not think O will work for me. I’m hoping pirtobrutinib will do the trick. Many here have said they experienced no GI side effects.
This is true, but outside BR it looks like you have had a series of monotherapies, which statistically is "more likely" to lead to resistance. I am wondering if you are a better candidate for doublet or triplet treatment. Or a new mechanism of action agent, or CAR-T/SCT.
Hi Renee. I have been on clinical trial (at MSK) taking Loxo 200 mg (Pirito.) since June 2019. I have no side effects and although it did not achieve remission it has controlled my CLL.My background is diagnosed in 1998,unmutated,P53 and other risk factors with several previous treatments. If you want additional info feel free to contact me privately. Best of luck. Fran
I was on the LOXO-305 trial at Sloan Kettering. Probably the best CLL drug I have been on. I lasted 24 cycles before I developed a new mutation. This was my 4th treatment since 2010. I saw an immediate improvement to my blood counts in just two weeks, no side effects. This is a good choice from your Dr. I also was treated at Penn for five years.
I just started Pirtobrutinib. On it for two weeks. There is no ramping up. You take full dosage on day one which is two 100 mg at one time. So far no side effects excep since I am on blood thinner I have been getting several black and blue marks.
My first checkup after 10 days showed an increase in my platelets from 103 to a normal 170. I had issues with low platelets for a while my lowest number was 70 about 3 month ago. I also had neutropenia issues for past year getting neulasta injection every month levels as low as .5. My recent level is about 1.5 which is ok for me now. Hope this drug continues to work wonders they plan to add the V in about two or three months. I will keep everyone updated.
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Finishing line for Pirtobrutinib (Loxo) & Venetoclax combination trial.
Update: CLL husband got Bebtelovimab, Covid not ramping up, what next?
Coming Off Calquence (
Coming off of Calquence. 
