Keytruda & Fatigue: What helps decrease fatigue?

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...

Welcome to Mayo Connect @terrierlover, thanks for sharing your story, and for taking part in a clinical trial, especially for a treatment that has help so many. I'm glad that you were able to advocate for yourself and ultimately reduce the fatigue, it's fascinating to think about the complexity of our biological systems. Are the doctors able to test for low dopamine levels, or did you just need to try the Sinemet and reap the results?

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

Please see my story below. I had so many problems after Keytruda that it's been hard to keep track of them all but the chronic fatigue was the worst of them. It turns out that I also had a Dopamine deficiency.