Loss of appetite and fatigue after 10 weeks on Keytruda

Posted by lizfuller @lizfuller, Sep 21 8:12pm

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 21 8:33pm

Hi Lizfuller,
I'm so sorry that you are having such problems! My husband had lung cancer. He also was taking Keytruda treatments and it nearly killed him! He got pancreatitis which is a known side effect of Keytruda. He lost weight and was down to 120 lbs! He felt dizzy, ill, had more shortness of breath. Luckily, our primary care doctor, not the cancer doctor, got my husband to the correct specialist. My husband started to improve and get better but he refused to ever get another Keytruda treatment. This made our cancer doctor unhappy since our insurance had just approved another 6 months of Keytruda. The Keytruda treatments cost $25,000 per infusion at that time. They are probably more expensive now. My husband lived 13 years with lung cancer. He died two months ago. However, I'm sure that if he had continued on with the Keytruda he would have died a lot sooner. You might want to look up the side effects of Keytruda on the Mayo Clinic website and also the side effects of any other medications you take.
I wish you the best and will say a prayer for you.
PML

gisellef | @gisellef | Sep 22 8:56am

Good Morning:

To improve energy or reduce fatigue, I would try acupuncture administered by a Chinese Medicine practitioner. If that is not an immediate option, soups made with bone broth or pure chicken broth can help. (Please don’t think that canned soup will do the trick). Make or buy the real thing—preferably organic. If you eat meat, bison is exceptionally rich in nutrients. A couple of bison burgers now and then will help boost your energy. These are a few things you could try.
It is wonderful that you are keeping up with daily walks and Pilates. Don’t worry about hitting the couch in the afternoon. After all you are doing an intensive medical treatment and you can expect some fatigue from all that your body is going through. Take care and try to eat organic and low processed foods!!! Best wishes.

kathyheidt | @kathyheidt | Sep 22 10:37am

Please make sure you don’t have drug induced pneumonia. I got it after three cycles

lizfuller | @lizfuller | Sep 22 10:55am

In reply to @gisellef "Good Morning: To improve energy or reduce fatigue, I would try acupuncture administered by a Chinese..." + (show)

thank you. actually I am lucky enough to get accupuncture twice a week! I have been getting it since my diagnosis. I credit them with help keeping me positive and this whole thing being not as bad as it could be. I have made broth several times and have a great recipe from "the cancer fighting kitchen" I just haven't been motivated. I mean there is frozen "magic mineral broth " to thaw and a rotisserie in the fridge and all the ingredients ready...
hopefully I get to it today.

gisellef | @gisellef | Sep 22 11:07am

You are on such a great path. Motivation comes and goes, unfortunately, for us whether we are sick or well. Give yourself a break. Do something nice for yourself. You may feel more motivated in the days to come.

abob | @abob | Sep 22 8:44pm

My husband has had several Keytruda infusions.
- Oncologist was surprised about his GI distress - constipation then diarrhea. We have found that a daily probiotic and Benefiber lessens the severely.
- His appetite is better than during chemo. Eating just a little something every half hour helps. If protein is not palatable, try a very cold protein drink.
- He also experiences bouts of fatigue especially during a few days after treatment, we plan on allowing the rest and naps that his body needs.