Anyone stopped Keytruda due to side effects?

Thank you for posting. To be clear, you had chemo AND immunotherapy (keytruda)?

@beebe I agree after what it did to me with no indication of any cance I had severe arthritis, muscle spasms lasting hours, lung nodules and then shortness of breath which turned out to be Drug-induced pneumonitis. I am now on high levels of prednisone and oxygen. Until Keytruda infusions I was able to do 180+ cardio exercises and lift weights. Now I need oxygen to go up and down stairs, lost 10 lbs. and all my muscle mass is gone. The Drug-induced pneumonitis started to show in a CT scan but they gave me a third treatment and everything went down hill. I stopped due to the arthritis and muscle spasms and then the breathing problems started 8 weeks after the last. This stuff at $130,000.00+/ treatment not for “just in case a small undetectable cancer cell is floating around.” No matter what they tell you. I wish I knew how common adverse side effects are. They told me “don’t worry the side effects are rare”. Turns out 40%+ class A side effects is the going rate.

@mah7925 Yes. First infusion was AC chemo by itself. The next infusion Keytruda was added. Then in my recollection (which may be wrong given my memory during treatment) is that during my third infusion it was AC and Keytruda, then the coma in about a week. My oncologist thinks it was only one infusion with AC and Keytruda.

@rosback
Yikes! That is quite a severe side effect, to go into a coma. What body system was attacked by Keytruda to cause that to happen? Hope you are doing well now.

@beebe The pancreas. It killed the beta cells. Well, it caused my body to no longer recognize my own body cells and not attack them. Keytruda removes our immune system's safety. And my immune system attacked my pancreas and killed its ability to make insulin. My pancreas can not longer produce insulin. I had no idea what was going on. Without insulin your blood glucose increases. I started peeing every 1.5 hours instead of my usual 2 hours. I started vomiting like a fire hose. I hadn't vomited before them. I tripped. Then apparently I kept calling my sister. By that time my BG must have been really high. I thought the symptoms were from treatment, that I finally was getting more of them. Ketones were building up in my body. And I went into Diabetic Ketoacidosis (DKA) and since there was no intervention it got high enough for me to go into a coma. My blood glucose was 1107 at the ER I'm told. I've read this is what happens to most of the people who get become a Type 1 Diabetic from Keytruda. I think it is technically Type 3C, but that is up for debate apparently.

@beebe The pancreas. It killed the beta cells. Well, it caused my body to no longer recognize my own body cells and not attack them. Keytruda removes our immune system's safety. And my immune system attacked my pancreas and killed its ability to make insulin. My pancreas can not longer produce insulin. I had no idea what was going on. Without insulin your blood glucose increases. I started peeing every 1.5 hours instead of my usual 2 hours. I started vomiting like a fire hose. I hadn't vomited before them. I tripped. Then apparently I kept calling my sister. By that time my BG must have been really high. I thought the symptoms were from treatment, that I finally was getting more of them. Ketones were building up in my body. And I went into Diabetic Ketoacidosis (DKA) and since there was no intervention it got high enough for me to go into a coma. My blood glucose was 1107 at the ER I'm told. I've read this is what happens to most of the people who get become a Type 1 Diabetic from Keytruda. I think it is technically Type 3C, but that is up for debate apparently.

@beebe I agree after what it did to me with no indication of any cance I had severe arthritis, muscle spasms lasting hours, lung nodules and then shortness of breath which turned out to be Drug-induced pneumonitis. I am now on high levels of prednisone and oxygen. Until Keytruda infusions I was able to do 180+ cardio exercises and lift weights. Now I need oxygen to go up and down stairs, lost 10 lbs. and all my muscle mass is gone. The Drug-induced pneumonitis started to show in a CT scan but they gave me a third treatment and everything went down hill. I stopped due to the arthritis and muscle spasms and then the breathing problems started 8 weeks after the last. This stuff at $130,000.00+/ treatment not for “just in case a small undetectable cancer cell is floating around.” No matter what they tell you. I wish I knew how common adverse side effects are. They told me “don’t worry the side effects are rare”. Turns out 40%+ class A side effects is the going rate.