jennunicorn

Kerri, I just want to send the biggest internet hugs and all the warmth and peace to you, Jake, and the family. I have read Jake updates for years as I went through my own journey in treatments and surgeries. I hate that melanoma has to be so brutal, I wanted Jake to get to the other side of this beast so badly. Thank you for sharing his journey with us and your beautiful words to always be happy. I couldn’t agree more.

Much love,

Jenn

I originally had stage 3 as well and went on adjuvant Yervoy. After almost a  year on that the melanoma was back, so my onc put me on Yervoy/Opdivo combo and after completing the 4 combo infusions and the many months of Opdivo only infusions, the last tumor shrunk and had surgery to remove the stubborn bit. That was over 3 years ago, I have been NED ever since.

Yay Tex, so good to hear!! Keep doin you and livin that best life 🙂

Mohs is typically used on the face or scalp. It’s a long procedure that takes small slices at a time until it’s all gone. They use mohs a lot for suspected basal cell carcinoma or squamous cell carcinoma, not as often for melanoma. Leaves less of a scar than a shave/punch/excision. I have never heard of it being used on other parts of the body. My brother had it done on his scalp for a basal cell. My mother in law, father in law, and father have all had it done on their face for basal cell. My uncle had it done on his face and his was melanoma.

I was in a similar situation where I hadn’t had any major side effects and then BAM fevers. Mine were also cyclical, they would start around sundown, 5-6pm and last all night until the morning, about 6am. I would be up all night fighting off a fever, then be exhausted during the day so I slept all day while I didn’t have a fever and it would start up again in the evening. This lasted about a month. It was miserable. That was the only big side effect I ever had on immunotherapy, so I am grateful it wasn’t worse. Went to the hospital when it first started, was tested for everything like infection and all else. It was just my immune system ramping up. Skipped an infusion during that time until my body calmed down. Sending lots of good vibes for your craniotomy and for you to feel better soon.

Hey Mike, I haven’t been online much lately but reading your update is making me just as furious as everyone else. I 100% agree with everything Celeste said, especially about the fact that this Dr. Jang is handling your care HORRIBLY.

My journey with melanoma started off very very bad, and it happened to be at a Kaiser… and for the few months I had to deal with their slow no give a f*&^ attitude, reading stuff like this really pisses me off. It’s a system that creates poor care with lackluster and seemingly uncaring providers. I literally work for the company I work for currently to CHANGE this exact experience you are having right now. So, please, if you are able to pay out of pocket for Hamid, I really think his advice would be valuable to you. The only way I got Kaiser to listen to me and 1: pay for a specialist appointment outside of Kaiser and 2: get me an appointment with Kaiser oncologist within a week (instead of the 4 weeks they were trying to give me) was to write a letter with a timeline of poor events that occurred and led me to the position I was in at the time. I handed that over to the office, gave strict instruction it was to go to the medical director or chief of medicine, and the next day I got a call from them approving everything. When they see stuff like that they assume lawsuit (because they get sued all the time) and they do what they can to avoid having to go down that path.. so it lights a fire under their butts.

Most of all I want to send you a huge hug Mike. It’s enough having to fight off the evil of melanoma… it’s a whole other thing to have to fight the messed up medical system.