Anyone had Keytruda for non-Hodgkin lymphoma?

Posted by nodunk @nodunk, Aug 27, 2022

Has anyone had Keytruda or any of the checkpoint inhibitors? I am 5 years in from last treatment for non Hodgkin lymphoma and am experiencing worsening peripheral neuropathy.

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Colleen Young, Connect Director | @colleenyoung | Aug 27, 2022

Hi @nodunk, the FDA expanded the approval for Keytuda (pembrolizumab) to include adults with relapsed or refractory classical hodgkin lymphoma (cHL) in 2020. It has been used to treat other cancers, such as melanoma, bladder cancer, lung cancer, colorectal cancer, B-cell lymphoma and more.

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Is Keytruda working for you? Have you discussed the worsening neuropathy with your team? Is it expected to improve once treatment ends?

nodunk | @nodunk | Aug 27, 2022

Treatment ended 5 years ago. CIPN continues to worsen. Believe the drug obviously is great for dealing with cancer cells but in my case put my immune system out of whack where healthy cells are being attacked with pain being the result. Can’t find anyone else who has experienced a similar fate.

tt120382 | @tt120382 | Jan 20, 2023

In reply to @nodunk "Treatment ended 5 years ago. CIPN continues to worsen. Believe the drug obviously is great for..." + (show)

Hello, I just finished my 3rd round of Keytruda for Non-Hodgkin Lymphoma. I cant really answer your question but I do know when I started having stiff and sore muscles and joints the nurse said it can cause autoimmune type responses. I wonder if that is what you are experiencing?
Can I ask, how many rounds you did of the keytruda and if you did any chemo following? I have a PET scan coming up and my Dr mention chemo even if it is clear. I feel so good and all of my symptoms are gone, I am terrified of chemo making me sick .

Colleen Young, Connect Director | @colleenyoung | Feb 4, 2023

In reply to @tt120382 "Hello, I just finished my 3rd round of Keytruda for Non-Hodgkin Lymphoma. I cant really answer..." + (show)

Hi @tt120382, welcome. I'm tagging @nodunk to make sure they see your post.

I can understand your concern about chemo. Have you had your PET scan in the meantime? What type of chemo drug did your oncologist think might be in your treatment plan?

tt120382 | @tt120382 | Feb 5, 2023

Hello, originally he wanted to do ABVD but the B had to be removed because of my right lung having a pleural effusion. The Keytuda cleared that up. I had a PET scan last week and my.lungs are clear and my.mass size has decreased. I am going to request moving forward with more Keytruda. I cannot bring myself to do chemo when we have a treatment that is proving effective and isn't causing harsh side effects.

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