HiNRG

Initially diagnosed in 2004, I’ve been on Keytruda since February 2017 and the reason for that is that my melanoma kept returning in tumors as soon as I was off treatment.

I’ve had a host of side effects but before I go into those, let me assure you that I believe the treatment side effects are far better than the alternative. I lost a sister-in-law to melanoma and saw many melanoma patients leave us throughout the years. I also am a person who reacts strongly to most medications.

Side effects:
I’ve had severe diarrhea but believe it or not, when it turns to severe constipation it is far worse and vastly more painful.

Kidney levels were extremely poor for a while and had to be off treatment while they healed. Keep drinking plenty of water.

My liver levels suddenly went crazy and just after they had a woman in ICU for the same. Mine healed with high dose steroids and kept at a great level with a low carb diet the liver specialist put me on.

I now have psoriasis and psoriatic arthritis which go from not so bad to very bad but if I cut back on carbs and drink more water, they improve again. Steroids also help those but you can’t stay on high dose steroids because they will also cause problems.

My stomach doesn’t like the treatment so I get premeds every time and the nurses tell me that is unusual.

I’m much more tired than I used to be and take a lot of naps, but in between is fairly good.

I was one of the few where the treatment caused my entire stomach to be covered in bleeding ulcers. That was the worst. I still recall the call to the doctor who had diagnosed my Yervoy induced ulcerative colitis and he said “You almost died then” and I said “I know. This is worse.” He took me serious and even though it was the beginning of Covid, managed to get me in the next day for an endoscopy and when I woke up he was telling me I could have died from that… again. If you have something you are concerned about, speak up and if you don’t think your oncologist or nurse took it serous enough, speak up again. It’s your life and you are part of the medical team.

I also developed COPD while on Keytruda and while they do not believe it caused it, they do say it doesn’t help. I was never a smoker.

It also sent my already bad thyroid into ups and downs for a while but recently it has leveled off.

My cortisol levels plummeted during 2021 and now I am also on low dose steroids for the remainder of my life to help my pituitary and adrenal glands. I was already on thyroid medication so this was not a big deal to me but definitely gave me back a little of my energy.

I wish you all the best on your journey! Again, most people do not have most of these side effects.

I've had a melanoma tumor that came back inconclusive on the initial biopsy that was indeed melanoma and the pathology reports from the surgery reports positively identified it as melanoma. I've never had one come back as benign and then be determined to be melanoma.