Jennifer, I had Ipo/Nivo for a year and it seems to have helped me. With respect to my 3 left lung tumors, one of them, the smallest one, is now gone. And, the largest one and middle-sized one are now both shrunk in half. And my oncologist that gave me the immunotherapies thinks there's a decent chance that the two remaining ones that are shrunk in half may not be living cancer any more. I'd certainly love that.

With respect to my left brain, the initial 2" one there was semi-emergency surgically removed back on 11.30.21. The new, now 5mm one up there, just below where the original 2" was, hopefully it will have to battle the immunotherapy changes to my blood system. But, if the immunotherapy hasn't ever gotten through my blood brain barrier, then I won't be getting any help up there.

My negative side effect from the immunotherapy was that it whacked my pituitary gland. So, I have to take hydrocortisone and levothyroxone pills every morning, and another hydrocortisone pill every evening, all for the rest of my days. But, if it really is what's helped me, and I believe it probably is, then that's okay.

I personally have spoken with three other people that had, like me, nivolumab (Opdivo) and Ipilimumab (Yervoy), and it helped all three of them as well. They all three had negative side effects as well. One was permanaently wiped out joints, one was permanently wiped out guit, and one was T2D (Type 2 Diabetes) requiring serious daily insulin injections.

All four of us have negative side effects, but mine are likley the least harmful. Bottom line is tho, so far it seems as though they've helped to save all four of our lives.

The Colorado guy I referenced was actually a regular high country runner until these immunotherapies were taken. That semi-wiped out his joints very quickly. Thus he didn't get the standard two full years of immuno treatment. He was only getting the immunos for a few months, and it hammered his joints seriously so quickly that they stopped them quickly. However, even with the very short immuno treatment, it so far seems to have saved his life. I think his initial start of his melanoma was roughly 4ish years ago. I actually do not know his age, but would guess he's in his 40's or 50's.

Thanks for your help. All of this is scary! My husband has decided to go ahead with the infusions—starting next week.
We only hope it helps and less side effects.

Mary, sorry for the delay of this response. I had a year of Opdivo and Yervoy, and it's negative side effect for me is that it hammered my pituitary gland. So, for the remainder of my life I'm on daily hydrocortizone and levothyroxine pills. I do think it is/has helped me with my three left lung tumors. The smallest one is gone. And the large one and middle sized one are both half their original sizes. My oncologist who gave me the immunotherapies thinks there is some chance that those left lung tumors are now dead, i.e., no longer cancerous. I certainly hope that's the case. Unfortunately for me, it doesn't seem as though the immunotherapies in my blood system got through my blood brain barrier to help me deal with the melanoma cells in my left brain. Theoretically, from what I understand, there is about a 50% chance that the immunotherapies in your blood stream can possibly get through your blood brain barrier.

I know and have spoken with few other people who have received these two drugs and got material help (like remission) from it. However they each, like me, paid significant prices for the help. One lost her gut, one got T2D, and the third one loss normal use of his major joints, including feet, ankles, knees, and arms. He used to be a runner in Colorado, now he really has to work just to get around. Having said that, it did get him into remission from his melanoma.

Thanks to the ones who have replied to my question concerning my husband starting the immunotherapy with Nivolumab/ipilmumab. He had his first infusion 6 days ago and is doing well so far 🤞
He has loss of appetite, fatigue and some minor joint pain from the other 3 infusions with Keytruda before— but nothing new as of now. He was diagnosed with metastatic melanoma 5 months ago.