Melanoma & Skin Cancer support: Introduce yourself and connect

@mlb66: You sound very well
prepared for the road ahead. I’ve admittedly had some bumps and going through a bit of a difficult time right now although a clear line cannot be directly drawn to my immunotherapy. One thing I’ve learned after being diagnosed with metastatic melanoma is to be prepared for the unexpected so this is just one of those times. Another thing I’ve learned even before this is to always be your own health care advocate - use reliable sources to investigate medical issues you may encounter and take an active role in your care, seeking specialty advice when needed.

Let me know how you found your initial infusion at Mayo - I hope you were pleased and have a favorable response to treatment!

@grammato3: Sorry to hear you are hitting a rough patch right now, sending you strength and good vibes. Hopefully they can figure out what may be causing your setbacks. We just have to learn from the unknowns going forward, and hopefully with the help from others, be as prepared as one can be; not an easy task though.
My first infusion went very smoothly last week, but what they did say was spot on regarding side effects. With the nausea and fatigue, I was pretty much out of it Thursday and Friday. As you mentioned, still waiting on that unknown that may pop up...as of today, Saturday, I feel pretty good. Not much of an appetite, but do not have that exhausted feeling.
Stay strong!

I had Merkel cell carcinoma removed from my shoulder 10 years ago. I didn't realize there is a 40 % recurrance rate and now im feeling scared and rather foolish that ive not stayed on top of this! Im 82 and in super health, living in Greece many years now swimming in the sea many times each week. I can find no photos of how merkel looks except for a pimple looking bump. Mine never looked that. Are there other photos to help me check my arms?

My name is Robert, I've been battling stage 4 melanoma since last April. Immunotherapy w yervoy and opdivo. It was going well but then had a small bowel blockage in Aug. That set me back about 6 weeks. Last pet scan showed everything clear from my head to stomach but new lesions showed up in the incision area of the bowel resection. Dr then took me off the 2 meds and putting me on oral meds
The 2 meds r dabrafenib and trametlnib. Does anyone know about these meds. Thanks Robert

@donnahall
Can you access web sites for Mayo, Cleveland Clinic, John Hopkins, etc. They proably have a section on skin cancers.

I am not familiar with Merkel cell carcinoma. Is it a type of skin cancer? I have had SCC and a lot BCC skin cancers. I do find pictures for them on the web sites I mentioned.

Maybe the mentors will read your post and can cite a specific web site for you.

You are living in Greece. I know if I suspect something I can take a picture of it and send to Mayo Clinic portal and get a message back from dermatology. Most of time they insist I come in to visual see the suspected area.

@jc76 thank you for your advice. Yes, it is a type of skin cancer.

@wgv: I can empathize with your journey - I've been on pembrolizamub for nearly a year and for the past month have been struggling with significant colon issues. It's very possible I may wind up along the same treatment path as you.

Here's some information I've located: https://www.aimatmelanoma.org/wp-content/uploads/PAP-Dabrafenib-Trametinib-2024.pdf

Does that look helpful? Best of luck to you!

@donnahall Please excuse my delay in both in welcome and providing some information to you that we have here at Mayo you may find beneficial. Remember: It's never too late to educate yourself on skin safety. The sea is gorgeous on all the Greek islands (I've been to a few!) but the sun is strong so lather up with good sun protection and take heed of t he suggestions I'll include, also.
https://www.mayoclinic.org/diseases-conditions/merkel-cell-carcinoma/symptoms-causes/syc-20351030
https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/simple-steps-to-prevent-skin-cancer
Does this help to answer your questions?

@grammato3
I'm on day 3 of the meds, so far just tired . Hope it stays that way

@wgv yes, that fatigue can weigh you down. Hopefully that will be the worst of it. Keep me posted with how you’re doing.