Denise

Thank you so much, Ed. This is very helpful. My husband has an appointment today. He doesn’t have the number of events but he isn’t eating very much. His weight before he started treatment was about 163…this morning he weighs 144. So pretty scary. His oncologist, Dr. Philip Friedlander at Mount Sinai in NY had agreed that he should take the Lomotil to control and as I said it had been helping until now. He has an appointment today and I will suggest the blood testing and a CAT scan if they don’t, per your experience. Again, appreciate the encouraging words and the information about stopping treatment.

I am new to this forum but so happy to find it, and especially this thread. Need some advice on how to proceed. My husband was diagnosed at the end of January 2022 with Stage IV Melanoma. It was found by accident. He had an xray on his stomach after having an appendectomy which shot a little high and saw a shadow on his lung, PET and biopsy confirmed a 23mm X 17mm melanoma in the lower left lobe. A brain MRI was then done which confirmed there were four small brain mets (3mm,4mm, 5mm,6mm). Combination immunotherapy with Nivo+Ipi began on Feb. 16, 2022. After the first treatment he had rash and terrible itching and some diarrhea which got worse and the dr postponed the second treatment by one week to see if it cleared up with change in diet. We were devastated that his treatment had to be postponed and maybe stopped. My husband was diligent and took Lomotil and did the BRAT diet and things got better. He had the second treatment with some diarrhea but not bad, and last week had the third. Before this third treatment, the brain MRI was repeated and showed that two of the mets were smaller and two could no longer be seen. We were so excited. However, now after this third treatment his diarrhea is much worse and at times uncontrollable even with the Lomotil and diet. He has also lost a lot of weight. In the past the dr has always asked if there is cramping, black mucus or blood in stool and that is always a no. How do you know when diarrhea is a result of colitis? He has diarrhea, sometimes urgent, lost weight and is fatigued. Is this enough to diagnose it or must there be blood or black stools, mucus and abdominal pain. Sorry for such a graphic question. Dr has prescribed steroids to have on hand in case….we have a call in to the dr right now. I saw in this thread that not completing the four treatments because of the steroids doesn’t mean it won’t work anyway, but need reassurance and also the question of whether the second part of the treatment, Nivo alone, will be able to be done if he begins the steroids. I also saw in one comment from JudiAU that the dr still did treatment along with the steroids. Any help would be so appreciated!