Melanoma & Skin Cancer support: Introduce yourself and connect

@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.

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

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?

@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!

@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!

I'm glad you checked back in. I, along with many others I'm sure, have been thinking of you as October 8th approached. Best of luck today and congrats on grabbing the bull by the horns and beginning to 'organize' yourself. Hang tough!

@bluelizard: Hi, and thanks for your wishes for today. I have began digging into the resources, and will hit up the library soon. I was able to pick up a filing system you described and have began to fill each labeled folder with the noted information. As crazy as it sounds, it seems to sooth my thoughts as I am able to focus on each specific topic. Now, the notebook tip you provided is definitely going to be in my tool box of things for this battle, so thanks for that!!

Thanks for reaching out and providing your tips and thoughts, greatly appreciated. I will be back for sure, as this also helps sooth my mind.

Mike

@bwl8585: Hi Beth. It has been a roller coaster for sure, and my daughter has been a rock for me to lean on with all this. You know, this does suck...that feels good to say sometimes, so thanks for giving me the green light here!! haha!!

Thank you for the kind words, and I am glad I found this forum, as it is nice to hear from all the great people and hearing their encouragement.

Mike

@grammato3: Hi Susan. You are not alone, as getting sidetracked seems to be a hobby of mine! I hope your treatment went well and you are feeling good. My first go around with Keytruda was full of side effects, so hope you are having minimal impact after treatment.

Thank you for the information, and coupled with the information I received during my consultation, feel like I have a solid understanding of this next journey I am embarking on. But of course, time will tell.

I am at Mayo now, and will update you on how this first treatment goes, and the effects I may encounter.

Thanks agin!

@mlb66 I'm glad you've found this forum and posted. Sounds like you've been on a roller coaster with consultations, surgeries and new immune therapy. Feel free to say this all sucks because it does. We hold you close as you begin the therapy today.
Beth