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Loss of appetite and fatigue after 10 weeks on Keytruda

Posted by lizfuller @lizfuller, Sep 21, 2024

Hi, I have been participating in a clinical trial for the last 11 weeks with a STK11 inhibitor paired with Keytruda for treatment of metastatic lung adenocarcinoma. During the last 2 cycles I noticed more fatigue, weakness, loss of appetite, diarrhea/ looser thinner stools, and constipation. Plus some coughing, phlegm and breathing difficulties I've been experiencing, likely related to my vocal cord paralysis. I consider this maybe a 2 out of 10 on the possible discomfort scale but it has impacted my motivation to do things. I exercise regularly with pilates class 3-5 days a week and try to walk my dog daily. but that's about all I can do, I hit the couch by the afternoon and don't get up. I'm having trouble motivating to make meals. I was doing great at eating healthy but will now get taco bell (chicken not beef) if I'm not feeling like eating much but want some protein, or pots tickets if I can't think of anything else.

my question i guess is, what can I do to improve motivation, reduce fatigue and improve my appetite?

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pml | @pml | Sep 19 1:07pm
In reply to @zwt27638 "Just got update from my husband's radiation doctor that treated him saying his cancer appears to..." + (show)
Profile picture for zwt27638 @zwt27638

Just got update from my husband's radiation doctor that treated him saying his cancer appears to be stable. With only one treatment so he wants to do a second one for the other side. He also said there is no care for his cancer but they are trying to prolong his life as much as possible. Well he made it to his 67th birthday which was yesterday I cooked his favorite meal and which he said he wanted back for some reason he will not swallow. So hopefully they're treatment gets out of his system by the way do you know how long it took for it to get out of your husband system?

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It took about 3 months for the Keytruda to get completely out of my husband's body. He got pancreatitis which is a side effect of Keytruda. He almost died from that. But our primary care doctor got him to a good specialist which treated him correctly for the pancreatitis and my husband got better. The cancer doctor was so mad at the fact that my husband wouldn't have anymore Keytruda treatments, she refused to see him again. He only had 3 Keytruda infusions before he was so sick he refused to have anymore. I hope things go well for your husband. I'll say a prayer for both him and you.
PML

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abob | @abob | Sep 19 1:09pm

Yes, Keytruda is tough.

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abob | @abob | Sep 19 1:09pm

Yes fatigue, gi distress, loss of appetite, diabetes, high triglycerides, Afibs, hypothyroidism, skin rash from Keytruda. Perhaps 2 years of Keytruda is overkill?

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zwt27638 | @zwt27638 | Sep 20 9:15am
In reply to @pml "It took about 3 months for the Keytruda to get completely out of my husband's body...." + (show)
Profile picture for pml @pml

It took about 3 months for the Keytruda to get completely out of my husband's body. He got pancreatitis which is a side effect of Keytruda. He almost died from that. But our primary care doctor got him to a good specialist which treated him correctly for the pancreatitis and my husband got better. The cancer doctor was so mad at the fact that my husband wouldn't have anymore Keytruda treatments, she refused to see him again. He only had 3 Keytruda infusions before he was so sick he refused to have anymore. I hope things go well for your husband. I'll say a prayer for both him and you.
PML

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My husband's also has had three treatments, severe side effects unable to swallow, no appetite, severe constipation for about a month, dehydration, unable to focus and
communicate his
thoughts. Now he may only say one word and that's just calling my name. Please I do solicit your prayers it's been tough I work so hard to get in treatment it appeared to be working with Target chemo for 5 months and in June they did a PET scan and it showed the cancer exploded and start growing and spreading. The side effects from chemo was so severe they stopped it and the doctor out for radiation to his liver which I got to update the couple days ago it has stopped the cancer from growing and spreading Dr was surprised it easily takes 8 weeks to see any results Zack should results in 5 weeks so he was very excited. So now he wants to do the right side he said my husband blood is getting better since he did the radiation treatment Thank you for your prayers my dear you stay safe and thank you for taking time out to talk with me.

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pml | @pml | Sep 20 5:43pm
In reply to @zwt27638 "My husband's also has had three treatments, severe side effects unable to swallow, no appetite, severe..." + (show)
Profile picture for zwt27638 @zwt27638

My husband's also has had three treatments, severe side effects unable to swallow, no appetite, severe constipation for about a month, dehydration, unable to focus and
communicate his
thoughts. Now he may only say one word and that's just calling my name. Please I do solicit your prayers it's been tough I work so hard to get in treatment it appeared to be working with Target chemo for 5 months and in June they did a PET scan and it showed the cancer exploded and start growing and spreading. The side effects from chemo was so severe they stopped it and the doctor out for radiation to his liver which I got to update the couple days ago it has stopped the cancer from growing and spreading Dr was surprised it easily takes 8 weeks to see any results Zack should results in 5 weeks so he was very excited. So now he wants to do the right side he said my husband blood is getting better since he did the radiation treatment Thank you for your prayers my dear you stay safe and thank you for taking time out to talk with me.

Jump to this post

Hi,
I'm so sorry that you and your husband are going through such a hard time. It's difficult. I remember how hard it was with my husband being so ill like yours is. You both definitely have my prayers! God will get you both through this hard time.

It's good that the radiation seems to be working! At least I hope I read your message correctly and the radiation is working. My husband didn't have any radiation. However, after he quit all the treatments he lived for 14 more years. Mainly because the treatment was making him sicker than the lung cancer.

In the midst of all the treatments, doctors and appointments etc. do take the time to just tell your husband how much you love him even if he can't answer you right now. Talk about the good times and funny times in your life together. That helped my husband and I a lot! Towards the end of his life, I had to help my husband wipe himself when he had a bowl movement. It really bothered him. He said that he probably reminded me of when my son was a baby. I told him, "No, it reminds me of when I worked in the nursing home when I was young and old men always flirted with me!" He started laughing at that and it was so good to hear him laugh!

Another thing that helped my husband and I through the hard times was praying together. When I say praying I really mean just talk to God. It doesn't have to be a formal prayer. Maybe just thank God that you two are still together and ask him to heal your husband.

I will definitely remember you both in my prayers! If you want to talk, I'm here anytime.
I wish you both the best.
PML

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