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Hi All, Seems like a great forum and feels like I finally found people I can share my experiences with. I am 60 years old male and started treatments with Keytruda about a year and a half ago for melanoma. I only found out about the melanoma after a minor fall mountain biking. I had a mole on leg since childhood and it broke, bled and never healed. Sure enough it was melanoma which they removed. About a year later, I had another fall mountain biking and this time I ended up with a big bump in the upper thigh area. Sure enough it had spread and before lone I was under the knife to remove glands in that area. So treatment began with Keytruda and all seemed fine. No side effects, etc. I was still healthy, strong, vibrant and working out 4-5 days a week pretty intensely. At one point I mentioned to my doctor that my balance was starting to falter at times and he recommended a brain MRI. Sure enough there were signs of metastasis up there. So about 4 monts ago I started receiving the combo of Nivolumab and Ipilimumab. At first nothing seemed different from Keytruda but after a recent illness (Covid???) everything changed. I know have a hard time just getting out bed and am constantly lethargic and have bouts of intense chills. I have also lost about 15 pounds and have little appetite. Just wondering how "normal" these symptoms are. My doctor recently changed the scheme to just Ipilimumab (not because of my symptoms but because that was the path we were scheduled to follow.). He said I would feel the toxicity of the Nivolumab /Ipilimumab combo for another month. Again, just curious if anyone has experienced similar side effects. Much appreciated!

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Replies to "Hi All, Seems like a great forum and feels like I finally found people I can..."

I was on nivolumab and ipilimumab for 18 months for lung cancer., with no serious side effects. I did develop hypothyroidism, but have been ok with thyroid medication. Last summer the ipilimumab was discontinued due to new unexplained side effects. These could have been the beginnings of my pancreatic cancer symptoms ( non-mets). I am still on the nivolumab, every 3 weeks. My lung cancer has been reduced. I believe these drugs were originally developed for melanoma. My concern would be that these "side effects " might be from another source.