Keytruda & Fatigue: What helps decrease fatigue?

keytruda wiped out my squamous cell cancer in less than 5 treatments.. it had spread from my tonsils to my chest and all over it.

i quit my treatments after a year and a half when i began to experience fatigue against my doctors advice but i had to start eliminating something.. 4 yrs alter im cancer free but not from chorionic fatigue which has ramped up to 24/7 f or weeks at a time

My CEA continues to drop within normal levels. I have a PET scan scheduled for the beginning of September to confirm if it actually helped. Have to admit the 6 days of radiation to the abdomen was not all that much fun.

I am on my 9 th round of Keytruda plus 8 mg of Lenvima. I am weak, have little energy and eating is a problem, food does not taste good. I have hoarseness and phlegm in Ipsy throat. I work then rest. My mouth is dry. Constipation and diharrea are a problem! Help!

GI issues - take a probiotic and 1 tablespoon fiber powder in full glass of water daily.

I don’t know what to advise about the fatigue. I have horrible fatigue from docetaxel. Do you have access to palliative care? Hopefully your specialists can help.

Thank you for your comment. My Best!

I’ve experienced musculoskeletal pain so much so that I couldn’t walk or bear weight on my hip. I’ve experienced unusual brain fog periodically and that too was definitely beyond the norm. The fatigue has been extreme but thankfully a few days here and there. When it hits it hits hard.

What I’d like to say is this…that 20% your doc told you is probably much higher. I was told to report any side effects but when I did about my hip & shoulder pain he just laughed and said it can’t be the Keytruda because it wouldn’t be just in one side. I know my body and I know these are all things not normal for me. It seems to me that these docs really don’t want to hear about it. Be your own self advocate and don’t hesitate to stand up for yourself. My doc gave me a course of steroids that worked and I’ve been pain free for now. The cancer scan showed no sign of cancer in my body now and I have 2 more treatments of Keytruda. I’m very happy and thankful but I also will be glad to be off of it. Good luck to you.

I was one of the earliest patients to be treated with Keytruda, starting with the Clinical Trials at UCSF. I was also treated with Yervoy, nominally, just to become eligible to receive the Keytruda early on. Eventually, I think after 11 infusions of Keytruda, I had to stop because the AE's had become overwhelming. At that point, they didn't know what was happening with me and didn't even consider checking my hormones to see if I'd been injured or not. Eventually, it was discovered that I had suffered; hypopituitarism, hypothyroidism, Adrenal insufficiency, hypogonadism, reticulated lung (ILD), etc.. About the only known AE I didn't suffer was T1 Diabetes. Most of these issues are treatable but for ten years, I'd suffered from the most debilitating and intractable fatigue imaginable. Sometimes, I'd be stuck in bed for six weeks at a time with no appetite whatsoever. I had to force feed just to keep some weight on. The only relief I ever got was from the OxyCodone I take for the pain caused by my neurotropic tumor, which is inoperable. For about an hour after each dose, the narcotic would resolve my fatigue for about an hour, which is rather odd considering that the narcotic is normally a depressant. After my latest episode where I lost 25 lbs in three weeks, I decided to spend every waking moment researching my issues and why and how this narcotic acted the way it did. I came to the conclusion that I might be suffering from a Dopamine deficiency. I found a drug that's used by nearly every Parkinson's patient, Sinemet, that is a strong Dopamine agonist and asked my doctor to prescribe it for me to test my theory. The acclimation period (10 days) was pretty rough, but my fatigue and malaise had pretty much completely resolved. I'm through all of the side effects now and have just increased my dose to 2X a day and I have never felt better. I have my life back. It's been so long, that I don't even know what a healthy 70 year old is supposed to feel like, but I feel great. It was a Dopamine deficiency all along and not a single doctor, even at Stanford and UCSF, even considered it or mentioned anything about it. In fact, they discouraged me from even trying it, even though I virtually had no life left at all. I couldn't work, go out to dinner....I couldn't even eat. All gone now...back to a normal life. I'm convinced that there are LOTS of patients just like me who are suffering from the same AE's that have no idea how to fix their issues. If you're one of them, I'd urge you to give this a try. It has changed my life and it was my last and only hope. I was really about to give up, unable to take it anymore. God bless you all...

Congratulations on your progress! Sometimes, the attitudes of these doctors can be pretty disappointing; the way they often totally disregard the patients' experience isn't very professional or sympathetic at all. I've been treated that way on many occasions and have been proven to be correct in nearly all of my battles with them over the years. They often act as if you don't know your own body, or what you're talking about. When their solutions don't work, they often just double down on whatever, disregarding the fact that what they prescribed isn't working. They often give up far too easily on these issues and never get to the bottom of the problem. It's a big problem in medicine that really needs to be addressed. Doctors....LISTEN TO YOUR PATIENTS FOR A CHANGE...you might learn something.

All that you say is true and I've experienced it all over the years. I am fortunate enough to have doctors who actually do listen, evidenced by the fact that they prescribed this medication off-label. After my success, I was stunned to hear him say that I was right all along. Normally, they skate around something like that. I really see it now that I'm down the road a little bit. When I first wake up, I still feel just as terrible as I have over the last decade...UNTIL right after I take the Sinemet and it all resolves within ten minutes. The contrast between how I feel on the med vs. without it is stark. It's no worse than it was, it's just easier to see and feel the contrast in real time now. I can't imagine how many other patients are going through the same experience as I was and I just want to get the word out there so that anyone suffering the same can try it out and see if that's also their issue. My doctor cited another patient who they'd diagnosed with ME/CFS (Myalgic Encephalomyilits/Chronic Fatigue Syndrome) fixing their condition with a similar drug. It frustrated me to hear that, thinking "why didn't you say something to me at the time you read that. My issue had also been called ME/CFS more than once. Anyway, that's all in the past now. I've got my life back!