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Real members of MyLeukemiaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I HAVE T-PLL..WILL A KINASE INHIBITOR WORK?

A MyLeukemiaTeam Member asked a question 💭
Vero Beach, FL

There is one person on a Kinase Inhibitor that seems to be working,however its hard to understand or obtain information on this treatment.Who could I talk too about this?

August 3, 2024
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A MyLeukemiaTeam Member

Have him contact massive bio and health tree to submit your medical for clinical trials. Keep pushing him so he can reach out to specialists in the field.

August 4, 2024
A MyLeukemiaTeam Member

He did say there were no clinical trials in previous conversations.He is a poor communicator and he hardly talks.Im in a small community and it would be hard to find another doctor withkut travling

August 4, 2024
A MyLeukemiaTeam Member

Hi John, I would speak with my doctor for clinical trials. I also found the two following website that try to match you for clinical trials - Massivebio.com and Healthtree.org. They require your records to match you for clinical trials. There’s also clinical trials.gov where you can enter T-PLL as condition and it will search for trials. I am also in the middle of getting another bone marrow test to determine my mutations as the first was not a sufficient sample. This should provide more information as to what other drugs may help in clinical trials. Keep pushing forward and move your doctors.

August 3, 2024
A MyLeukemiaTeam Member

I just read information concerning T-PLL indicates T-cell prolymphocytic leukemia. The T cells can be Inhibited with the BTK Inhibitor but it looks like only a percentage interact? You should discuss the biological reaction with your doctor or continue checking with google "can BTK inhibitor affect T cell proliferation" I found an article : Treatment of T cell prolymphocytic leukemia @ https://www.uptodate.com/contents/treatment-of-...

UpToDate
August 6, 2024
A MyLeukemiaTeam Member

I’m not sure of the answer to your question but the doctor made it seem that they could not determine my mutations without blood from the bone marrow and a better specimen. Ask your doctor if they can determine your mutations with the testing that they have previously performed. I have found that because our leukemia is very rare, I’ve had to keep asking many questions. I will even pepper her with questions regarding clinical trials.

August 3, 2024

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