I have just completed the 2 year combination clinical trial with Pirtobrutinib and Venetoclax - I think a small study of us in Australia. ( Also worldwide) This has resulted in no detectable cancer in my blood and lymph nodes- woohoo! My last Bone Marrow test showed just outside the non detectable parameter, but in all a huge percentage reduction to what it was when I started.
I continue to be monitored every three months with blood tests and scans.
I'm very grateful as this is my third treatment, I had lots of misconceptions about being on a clinical trial but despite the mileage and disruption it’s been well worth it.
I treated myself to a puppy dog and a couple of Gin and Tonics 😉
Written by
Billarina
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I know what you mean, and it does take some early training that can be tiring.
However, you know the rewards come fast and they learn what you can tolerate. There is nothing like a dog's greeting and enthusiasm on seeing you return home, or letting you know the answer to: "Wanna go for a walk?"
Enjoy the overjoyed receptions!!! You will laugh a lot and talk without being interrupted--unless, it is a bark or bit of a whine when you are not ready to go the minute you suggest a walk. Dogs are always in the present, they don't know later or tomorrow. NOW!
Well done! I love the idea that you rewarded yourself with a little puppy! I might have to copy you when I finish treatment in a few weeks time!Kept walking,
So pleased your treatment worked, always good to hear good news. With the puppy - remember that all of his toys are yours which you let him play with and you can remove them from him easily, on command. Enjoy him.
What wonderful news! A puppy and gin and tonic; perfect for a celebration of such a joyful event. I am on a Pirtobrutinib trial, but without venetoclax, my numbers are good except for lymphosites % and with no apparent side effects. So wonderful to have treatments that work!
Congratulation! What absolutely wonderful news. It sounds like you have had quite a time of it so enjoy both the puppy and the gin and tonic. I just finished Obinutuzamab and Venetoclax . I am Thrilled that I am u MRD. I have not really done any celebrating or rewarded myself in any way . I think I may be a little too leary to believe that I really am in remission.
Hope you are still doing well and enjoying your puppy and Gin and Tonics! My specialist wants to switch me to pirtobrutinib from calquence once it has received FDA approval for CLL. What can you tell me about side effects from P! Did you have any gastro issues? Weight loss or gain? Did you have to ramp up the dosing or start at full dose day one? Any initial side effects or tumor lysis issues? Sorry for the many questions. I have had lots of side effects from all my treatments so just want to be prepared. Pirto will be my 5th treatment since diagnosis.
Hoping this one will finally give me a long durable remission.
Dear Renee, please accept my apologies for not responding- it’s been a whirlwind of a year so far- my mum was diagnosed with stafe 4 lung cancer & now living with me and unfortunately a few months after the combination trial ended I relapsed I’m back on the same drugs to get me to a state of remission in order to have a stem cell transplant. Despite all the that I’m staying positive and enjoying the fact I have little to no side effects with either drugs - I’d say Venetoclax is the one that can make me feel a little queasy- but I’ve been on Pirtobrutinib on its own and never had an issue. I’m sure this news is a bit belated for you now so I do hope it’s going well for you. Take care
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I’m back on the same drugs to get me to a state of remission in order to have a stem cell transplant. Despite all the that I’m staying positive and enjoying the fact I have little to no side effects with either drugs - I’d say Venetoclax is the one that can make me feel a little queasy- but I’ve been on Pirtobrutinib on its own and never had an issue. I’m sure this news is a bit belated for you now so I do hope it’s going well for you. Take care 
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