@ellentheachernoff: Hi Ellen and welcome to Camp Mayo Connect! I'm reminded of the old - and I do mean OLD - song by Alan Sherman where he's singing like a kid at a camp called Granada that he hates, begging his parents to take him home: "Take me home, oh muddah, faddah; Take me home, I hate Granada" - at least until the sun comes out after interminable rain when he says "kindly disregard this letter"!

I can't promise you're going to immediately love camp here but I do think you'll find people of similar backgrounds with various comorbidities such as you've experienced to various extents and have weathered the storms. Speaking from my own experience with metastatic melanoma - but from a known primary source that was classified as 1A (low chance of metastasis or recurrence) so a surprise nearly 5 years later when found to have spread - I also had some initial adverse reactions, including skin rash/itching. Although they were fairly significant, they were managed and transient, and have subsided as immunotherapy has continued.

I've found having knowledge of the potential adverse reactions (ARs) have been very helpful in early identification to seek intervention and treatment. This has been a useful guideline based upon the type of immunotherapy being provided, found here: https://aimwithimmunotherapy.org/resources-for-your-patients/patient-action-plans/

I also know it can be hard when we're told we look great when internally we may be struggling with how we feel physically or mentally, which admittedly not everyone understands. We actually have a monthly Zoom Support Group Meeting facilitated by a Mayo LCSW where those of us with melanoma can discuss all issues pertaining to this diagnosis, regardless of where we're treating. For more information: https://connect.mayoclinic.org/events/

Do you think this might be something you'd be interested in?