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Keytruda side effects after completing 2 years lung cancer treatment

Posted by par92 @par92, Apr 16, 2024

Has anyone experienced swollen ankles, lack of absorption of protein, severe diarrhea, and pancreatitis after finishing treatment. Many effects during treatment were bearable. Completed treatment December, the last 4 months have been debilitating. Any feedback would be appreciated. I was diagnosed with metastatic Stage 4 lung cancer in both lungs. Treatment was successful and currently no sign of cancer. Had breast cancer 7 years ago and treatment was successful.
My lung cancer is from smoking 50+. Thank you for any feedback.

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bjlt11 | @bjlt11 | Nov 11, 2024
In reply to @par92 "Hi Lisa, my doctors (primary, oncologist and gastro) ran many many test. Including colonoscopy and biopsy’s,..." + (show)
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Hi Lisa, my doctors (primary, oncologist and gastro) ran many many test. Including colonoscopy and biopsy’s, endoscopy, stool testing, blood samples, MRI and CtScans. Many different medications. Nothing helped. Everything has come back negative. My body is not able to absorb nutrients. Lack of protein is thought to be cause of ankles swelling. I’m working on meeting eating/drinking protein limits. Diarrhea so severe I need to take 2 Imodium tablets 3 times a day. Otherwise my trips to the bathroom can easily add up to 10-12 times a day without them. The pain is excruciating. Food bypasses normal digestion process.
I have not only lost so much weight but all my muscles are mush. Right now I’m on 60 mgs prednisone with the hope it will reduce inflammation, which may be cause of
soft yellow smelly and floating stools, or oily yellow watery diarrhea. It’s a process of elimination at this time.
Hopefully my oncologist has additional information related to my side effects. I’m so grateful there is no sign of cancer. I truly stay in the day. Looking beyond this is to scary.
Thank you for reaching out. I will read the discussion sites you passed on.
Pat

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Hello
In searching for information about my daughter's long lasting side effects from Keytruda I came across this site and your post. My daughter's Onco told her that Keytruda affects every system in the body. While you may not have diabetes you could have poor amylase amounts and are unable to digest your food. The pancreas also puts out enzymes so you can digest and absorb nutrients. There is an actual name for this, but I can't remember it. My father had the symptoms you describe about your diarrhea, and he took amylase when he'd eat. The amount depended on how much and/or how fatty his meal was. There is medication for this now also.

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Mentor
Lisa, Volunteer Mentor | @lls8000 | Nov 11, 2024
In reply to @bjlt11 "Hello In searching for information about my daughter's long lasting side effects from Keytruda I came..." + (show)
Profile picture for bjlt11 @bjlt11

Hello
In searching for information about my daughter's long lasting side effects from Keytruda I came across this site and your post. My daughter's Onco told her that Keytruda affects every system in the body. While you may not have diabetes you could have poor amylase amounts and are unable to digest your food. The pancreas also puts out enzymes so you can digest and absorb nutrients. There is an actual name for this, but I can't remember it. My father had the symptoms you describe about your diarrhea, and he took amylase when he'd eat. The amount depended on how much and/or how fatty his meal was. There is medication for this now also.

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Welcome to Mayo Connect @bjlt11. These treatments have a hold on us. We need them, but they can certainly take a toll on our body systems.
How long ago did your daughter stop Keytruda? How is she doing with the lung cancer?
Possibly @par92 will let us know how they are doing now.

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bjlt11 | @bjlt11 | Nov 11, 2024
In reply to @lls8000 "Welcome to Mayo Connect @bjlt11. These treatments have a hold on us. We need them, but..." + (show)
Profile picture for Lisa, Volunteer Mentor @lls8000

Welcome to Mayo Connect @bjlt11. These treatments have a hold on us. We need them, but they can certainly take a toll on our body systems.
How long ago did your daughter stop Keytruda? How is she doing with the lung cancer?
Possibly @par92 will let us know how they are doing now.

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My daughter actually took Keytruda for stage 4 Adrenal cancer after taking all available chemotherapies. She took it for 2 years and has been off it for 2 years now and also NED for 2 years. She does not regret taking it but she is so fatigued and has so much muscle and bone pain it is making it difficult to work. She is a kindergarten teacher which also has problems because of all of the sickness.

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daddylonglegs | @daddylonglegs | Jan 21 4:05pm

Hi i also had firstly lung cancer left lung and had a left lower lobectomy and 4 ribs removed.
It then moved to my upper right lung with that also removed. Then i had a showing in my liver with no other treatment available to me other than Pembrozulimab. Immunotherapy for 2 years at 6 week intervals. And since finishing my treatment i had no ill side affects at all. One thing that was very noticable was that my hair grew and i mean really grew. Didnt lose a strand. I would recommend to others here in the UK that i found it to be a great way to approach cancer destruction. It worked for me and i smoked for many years aswell,i am now 70 this year. I am saddened that it didnt work great for you but scientists are getting ever closer to defeating cancer. And it takes folks like us to show them it works for some and not so great for others. All the best for your future. I added a photo of my hair growth.

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