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Keytruda side effects after completing 2 years lung cancer treatment

Posted by par92 @par92, Apr 16 3:12pm

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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skm101 | @skm101 | Apr 17 8:35am

Par92.

I have not been on that med. Just starting my journey but it helps me to read your story and what a warrior you are! If you feel comfortable could you outline to me your prosses of becoming cancer free ? What you did?

REPLY
par92 | @par92 | Apr 17 9:37am

Thank you for thinking of me as a warrior. The journey started with my first oncologist bluntly telling me I had 6 mos to live or I could try Keytruda. That was my last visit this doctor and I replaced him with a wonderful caring and compassionate cheer leader.
My treatment started with 3 mos of chemo along with 2 years of Keytruda. I was blessed with minor side effects. Fatigue and weight loss were the only side effects.
Unfortunately approx 6 weeks after my treatment ended I have been ill with serious after effects from the Ketruda. Along with the current side effects I’ve loss 14 lbs.
Since then The Keytruda worked in eliminating the cancer. I will continue CatScans every 3-4 mos to watch for new cancer. My doctor is very hopeful that the cancer will not return. Should any cancer nodules return he will use targeted radiation.
For the breast cancer I did 3 mos of radiation 3 months of chemo along with Herceptin for 1 year. I’ve been breast cancer free for 7 years.
I have found cancer a scary journey but hope and a positive attitude, along with living in the day, helps me occupy my mind and focus on gratitude.
I wish you the best as you start your journey. Try to stay positive, and don’t hesitate to let others help you through difficult time.

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1 reply
lmd1 | @lmd1 | Apr 17 11:09am

You are blessed and I am so happy for you. Prayers for remaining cancer free. I am stage 4 NSCLC and did not smoke. I’m on chemo and if you don’t mind answering, I would like to know what chemo drug you received.

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par92 | @par92 | Apr 17 12:49pm

To be honest I don’t recall. Memory is still a bit off. I did not keep paperwork because all I did was get obsessive and I kept reading over and over again. After my doctor visit at the end of the month I will get the info.
Hang in there.

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Mentor
Lisa, Volunteer Mentor | @lls8000 | Apr 18 3:05pm
In reply to @par92 "Thank you for thinking of me as a warrior. The journey started with my first oncologist..." + (show)
@par92

Thank you for thinking of me as a warrior. The journey started with my first oncologist bluntly telling me I had 6 mos to live or I could try Keytruda. That was my last visit this doctor and I replaced him with a wonderful caring and compassionate cheer leader.
My treatment started with 3 mos of chemo along with 2 years of Keytruda. I was blessed with minor side effects. Fatigue and weight loss were the only side effects.
Unfortunately approx 6 weeks after my treatment ended I have been ill with serious after effects from the Ketruda. Along with the current side effects I’ve loss 14 lbs.
Since then The Keytruda worked in eliminating the cancer. I will continue CatScans every 3-4 mos to watch for new cancer. My doctor is very hopeful that the cancer will not return. Should any cancer nodules return he will use targeted radiation.
For the breast cancer I did 3 mos of radiation 3 months of chemo along with Herceptin for 1 year. I’ve been breast cancer free for 7 years.
I have found cancer a scary journey but hope and a positive attitude, along with living in the day, helps me occupy my mind and focus on gratitude.
I wish you the best as you start your journey. Try to stay positive, and don’t hesitate to let others help you through difficult time.

Jump to this post

Hi @par92, Welcome to Mayo Connect.
I'm not sure if you've seen these other discussions, where members like @ta52, @gregc1, and @schmeeckle64 have added their Keytruda experiences.
https://connect.mayoclinic.org/discussion/immunotherapy-and-chemo/
https://connect.mayoclinic.org/discussion/keytruda-1/
Is the weight loss that you are experiencing related to colitis? Lack of appetite or nausea?

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1 reply
par92 | @par92 | Apr 18 5:18pm

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

REPLY
2 replies
Mentor
Lisa, Volunteer Mentor | @lls8000 | Apr 23 4:47pm
In reply to @par92 "Hi Lisa, my doctors (primary, oncologist and gastro) ran many many test. Including colonoscopy and biopsy’s,..." + (show)
@par92

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

Jump to this post

@par92, Oh this sounds so painful and challenging. Keytruda is fairly common now, and I'm sure your oncologist has had many patients go through the treatment. Hopefully they will have more ideas of what you can try next.
I wonder if reaching out to the manufacturer (Merck) may be helpful too. They may want to know what you are experiencing, and they may have other suggestions on what to try next. Just a thought.

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1 reply
par92 | @par92 | Apr 24 11:10am

Hi Lisa, I am going to see a nutritionalist next Tuesday after my oncology visit. Too exhausting researching on my own nutrition replacement vs. what would add to the issues I’m experiencing.
I had some really bad days recently. By Monday I could not take another day so Tuesday morning as soon as I woke I took the Imodium without eating or waiting for the diarrhea to start. Have not gone to the bathroom since or taken any Imodium. Not how I was told to take them. Good or bad, I could not go through another day of agony.
Friday I have a phone visit with nutritionist, I’ll ask the best way to get things moving again.
Trying to get back to making my daily gratitude list…
Stay well.

REPLY
sjohnson60 | @sjohnson60 | Apr 24 12:04pm
In reply to @lls8000 "@par92, Oh this sounds so painful and challenging. Keytruda is fairly common now, and I'm sure..." + (show)
@lls8000

@par92, Oh this sounds so painful and challenging. Keytruda is fairly common now, and I'm sure your oncologist has had many patients go through the treatment. Hopefully they will have more ideas of what you can try next.
I wonder if reaching out to the manufacturer (Merck) may be helpful too. They may want to know what you are experiencing, and they may have other suggestions on what to try next. Just a thought.

Jump to this post

I have been on Keytruda for 4 years thankfully no side effects other than being really tired

REPLY
par92 | @par92 | Apr 24 1:56pm

I am so happy for you that Keytruda has worked well with little side effects. Apparently I’m one of very few who has such a negative experience after completing Keytruda. I received a post from a member that has exactly the same issue. I copied it for my oncologist.
Currently I am cancer free, Keytruda has been a gift.
May your journey continue to go well.
Bless you.

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