Myla Posted August 12 Share Posted August 12 Hello, I am desperate for advice. My sister was dx with lung cancer in January 2024. She started on Keytruda in early April. Her last infusion was mid June (3 total infusions given so far) she started have aches on July 3. Since then it’s been a downward spiral. She has not gotten any infusions since June but her “side effects” keep worsening? She can’t talk right, or hold a pen, she talks about her husband to her husband like she doesn’t know who he is, doesn’t know her own b-day, is falling, and labs are all over the place. She’s been in the ED 5 times since July 8th and they say it’s side effects and DC her home. She is in the ED right now and we hope they do something for her. My sister is 63 and just flew out to see me at the end of June by herself. My sister was a functional adult 6 weeks ago and all PET scans showed her small spot on her lung was shrinking. What I’m really asking for here is how long do side effects last after stopping keytruda if that’s what this is or has anyone ever heard of this happening? My heart is breaking. Tom Galli, Pstar and LouT 3 Quote Link to comment Share on other sites More sharing options...
edivebuddy Posted August 13 Share Posted August 13 they usually stop rather quickly but depending on what the were it can take quite some time for the body to recover. The symptoms described do not sound like side effects from Keytruda but more neurological. With those symptoms the ER should have sent her for a brain CT or MRI. What did it show? Is she on any other drugs? I find it hard to believe its Keytruda. Pstar, Livin Life and LouT 3 Quote Link to comment Share on other sites More sharing options...
LouT Posted August 14 Share Posted August 14 Myla, Please speak to your sister’s doctor…these symptoms seem odd for this treatment protocol. Don’t be shy about it either. You might also look into having a “palliative care” member added to the team. Their job is to monitor treatment and take steps to reduce side-effects and unwanted discomfort. Lou Pstar and Tom Galli 1 1 Quote Link to comment Share on other sites More sharing options...
Pstar Posted August 14 Share Posted August 14 I agree with edivebuddy about a CT or MRI of her brain and Lou brings up good points. LouT 1 Quote Link to comment Share on other sites More sharing options...
Livin Life Posted August 15 Share Posted August 15 I too agree with brain MRI.... I don't know much about Keytruda though unfortunately have learned a lot about brain mets and the like... LouT 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted August 15 Share Posted August 15 One of the top researchers in lung cancer, David Carbone, was at the Ohio State University. I strongly suggest a second opinion ASAP. LouT 1 Quote Link to comment Share on other sites More sharing options...
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