CLL Deletion 17p in partially paralyzed father - CLL Support

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CLL Deletion 17p in partially paralyzed father

CLLdaughter profile image
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My father has recently been diagnosed with CLL with deletion 17p. This follows a diagnosis and treatment of Non-Hodgkins Lymphoma 10 years ago. His brother was recently diagnosed with CLL as well. In January, my father had surgery to repair a partially severed spinal cord due to arthritis. His mobility is compromised. He can only walk with a walker and an aide so pretty much wheelchair bound, he has a peg feeding tube because cannot swallow, needs assistance bathing and using bathroom. My question is this, how would CLL treatment affect his progress with trying to get stronger to walk and gain independence. He has always said he would never do chemo again, yet he may be considering it. I just don't know if his quality of life would be diminished even more with treatment? Would it extend survival?

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CLLdaughter
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Cllcanada profile image
CllcanadaTop Poster CURE Hero

There certainly are new treatments available for 17p deleted patients, particularly in the U.S.. All have side effects, but they tend to be milder than chemo immunotherapy for the vast majority of patients.

I think age is a factor in treatment choice, perhaps a monoclonal antibody like rituxan or the newer Gazyza would be an option, Ibrutinib, Idelalisib or he might qualify for Venetoclax since he is 17p deleted, at least in the U.S.

Nobody can speak to the quality of life, because everyone is different, but again it should improve in my view.

Perhaps you can attend the next appointment and get clarity from his doctors...

~chris

Hoffy profile image
Hoffy

Chris gave good options. Chemo is not an option with 17P deletion. I am 17P deleted on a clinical trial imbruvica and venetoclax. I am doing well so far and the side effects have not been too bad. If you can get an opinion from a CLL expert that would be helpful. The CLL society web site has a lot of details.

Also if he does not EES treatment he can just watch and wait a while. Many years sometimes

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