1. < Lung Cancer

Keytruda & Fatigue: What helps decrease fatigue?

Posted by abob @abob, Feb 15 7:39pm

My husband just had his 14th Keytruda . He now gets more fatigued after each 3 week infusion, plus lack of appetite. I figure 2 years = approx 34 treatments. I hope he agrees to continue on with them.

Any suggestions to decrease his fatigue?

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abob | @abob | Apr 19 7:42am
In reply to @lls8000 "Hi @dulcist, How is your husband doing now? Is he off all treatments?" + (show)
@lls8000

Hi @dulcist, How is your husband doing now? Is he off all treatments?

Jump to this post

Apple Watch told husband he started having AFib and too high heart rate. Electrophysiologist said 20% chance caused by Keytruda. He will have ablation next week. Will need to find out if stopping Keytruda is advisable.

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abob | @abob | Apr 19 7:50am

I don’t know if / think that side effects mean it’s working.
Hubby had stage 4 NSCLC and has had 15 every 3 weeks treatments.
CTs & Pets & dna blood tests thus far show no cancer.

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1 reply
abob | @abob | Apr 19 7:57am
In reply to @susannac "I took Keytruda five years ago for a metasis in my thigh (?) from an earlier..." + (show)
@susannac

I took Keytruda five years ago for a metasis in my thigh (?) from an earlier lung cancer. After I took three infusions (is that about 10 weeks) I got colitis. Well the colitis could not be stopped as it is a known side effect which can happen to a very small percent of the population. Had to be hospitalized in hopes of controlling the 15 times a day diarrhea. Then picked up c diff in the hospital. The pain to my stomach - from the Keytruda - had me on around the clock morphine for about 4 weeks. Keytruda is a pretty serious drug and I recommend keeping yourself monitored about how and in which ways it can be affecting you. The doctors did find a drug to help the colitis - budinisone or such - and the pain in the stomach lifted and I went home very weak and thin. Couldn't eat the whole time so lost 30 pounds - had gotten ulcers on my duodeum. But I will say the cancer was eliminated. I was always fatigued from taking the Keytruda and accompanying chemo - could barely brush my teeth, shower, etc. Hard getting up from the toilet - if you can imagine. Very weak. The Keytruda web site says if Keytruda turns on you it is after the third infusion. About 10 weeks in. So keep an eye on yourself and definitely discuss with your oncologist. It's still a new drug - hope this helps!

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Thx for your reply. Husband’s fatigue and lack of appetite increased. Apple Watch told him AFib and irregular heartbeat. Electrophysiologist said 20% possibility caused by Keytruda.

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1 reply
susannac | @susannac | Apr 19 8:17am
In reply to @ladylennie "I've had 6 keytruda treatments, every 6 weeks for stage 2 nsclc. I feel generally lousy...." + (show)
@ladylennie

I've had 6 keytruda treatments, every 6 weeks for stage 2 nsclc. I feel generally lousy. It's a bunch of small things that add up. Fatigue, rash, digestive issues, back and leg aches, etc. Has anyone else had this? And does it mean keytruda is working? My next scan is next Friday.

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Hi - I also had a rash from Keytruda on my chest. By the third infusion I started noticing I was getting colitis - mucus with stools which then over a series of days turned into some bad diarrhea which I ended up having for weeks. This is just my story by the way. I went to the hospital and stayed for five weeks - losing over 30 pounds as I could hardly eat my stomach and intestines were so inflamed. But I was one of those people who developed a bad reaction to the drug. Even though I went through all that - the cancer was killed and it is now five years later. It was worth it to me for such a great outcome. I believe the Keytruda killed off anything else that was brewing in my body. Does that help - it was my experience. That you are experiencing the rash - that alone tells me the Keytruda is working.

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2 replies
susannac | @susannac | Apr 19 8:19am
In reply to @abob "I don’t know if / think that side effects mean it’s working. Hubby had stage 4..." + (show)
@abob

I don’t know if / think that side effects mean it’s working.
Hubby had stage 4 NSCLC and has had 15 every 3 weeks treatments.
CTs & Pets & dna blood tests thus far show no cancer.

Jump to this post

That's great to hear - that he is not showing any cancer!

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susannac | @susannac | Apr 19 8:22am
In reply to @abob "Thx for your reply. Husband’s fatigue and lack of appetite increased. Apple Watch told him AFib..." + (show)
@abob

Thx for your reply. Husband’s fatigue and lack of appetite increased. Apple Watch told him AFib and irregular heartbeat. Electrophysiologist said 20% possibility caused by Keytruda.

Jump to this post

I did not have afib or irregular heartbeat from Keytruda. I did get afib after surgery five years earlier for the upper right lobe removal - it inflamed that area around my heart. I realized over time that something I was drinking could set it off - coke or pepsi as it is heavy in caffeine and carbonation and sugar. In fact the hospital has it on my chart that it is poison to me - LOL.

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ladylennie | @ladylennie | Apr 19 1:00pm
In reply to @susannac "Hi - I also had a rash from Keytruda on my chest. By the third infusion..." + (show)
@susannac

Hi - I also had a rash from Keytruda on my chest. By the third infusion I started noticing I was getting colitis - mucus with stools which then over a series of days turned into some bad diarrhea which I ended up having for weeks. This is just my story by the way. I went to the hospital and stayed for five weeks - losing over 30 pounds as I could hardly eat my stomach and intestines were so inflamed. But I was one of those people who developed a bad reaction to the drug. Even though I went through all that - the cancer was killed and it is now five years later. It was worth it to me for such a great outcome. I believe the Keytruda killed off anything else that was brewing in my body. Does that help - it was my experience. That you are experiencing the rash - that alone tells me the Keytruda is working.

Jump to this post

Sorry you went through that. But you're giving me hope. I had colitis in January and was on a 3 week course of prednisone. I missed one full cycle, 6 weeks. Of keytruda. Then my next dose was only half. Now I'm afraid the colitis may be back. If so, I'm most likely done with immunotherapy. So, the hope is that it's already worked and will continue working. Pet-ct is Friday so I'll see how it's working.

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susannac | @susannac | Apr 19 2:55pm

Hi - I totally forgot but I was put on prednisone also. It seemed to take care of the colitis but then it returned so was put on it a second time. When tapering again the diarrhea got too bad so went to the hospital but I remember that I was still on the lower dosage of prednisone at that time. Then I got c diff in the hospital and the antibiotics didn't work so they had to get me a special antibiotic called Deficil. Good grief. They did give me round the clock pain killers - morphine - for all the stomach discomfort which did help a lot with pain. I took Keytruda three times in total and then had to be taken off it. Again I think it was the Keytruda that saved me - I wish you the very best and hope you will let us know how the pet scan looks. 🙂 One doctor oncologist stopped by tell me the Keytruda ate up 60% of the tumor. Now I have it checked every year and it is dead and getting smaller. MRI. Hope this helps!

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Mentor
Lisa, Volunteer Mentor | @lls8000 | Apr 21 2:55pm
In reply to @nik28t "I'm on about my 30th round of Keytruda. The biggest thing I have found to help..." + (show)
@nik28t

I'm on about my 30th round of Keytruda. The biggest thing I have found to help with fatigue is to listen to your body and rest when it tells you to. That said, exercise, hydration and good eating has also helped keep my energy up. Please don't think by healthy eating that I mean some fancy diet. I only mean eating less highly processed foods, eating more home cooling vs eating out... I hope this helps.

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@nik28t, 30 rounds?! you're an expert by now. Will you remain on this treatment, it's obviously been effective for you?

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1 reply
abob | @abob | Apr 22 8:34pm

Husband just had 4hr electrophysiology procedure to esp to fix 2 afib areas.
He has had minimal fatigue and increased appetite since. Now need to discuss with oncologist if Keytruda needs to stop,

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