Melanoma & Skin Cancer support: Introduce yourself and connect

@nancycj Thank you for sharing your perspective. Wishing continued good health to you!

Hi Susan, thanks for your comments. I stay optimistic by my faith in God and the Doctors. Also, the support and prayers from my family and friends, as well as our 2 loving dogs. Stay active, even a small walk every day helps with your mental state. I am a fighter and will not give up!

@nancyjv: it's my pleasure to extend a warm welcome to you with that positive and encouraging background! You're an inspiration to those who have monocular vision and continue to be active AND to those with liver mets from uveal (eye) melanoma undergoing treatment.

To anyone who is unclear as to what PHP stands for, this is Percutaneuos Herpatic Perfusion - a procedure that provides high doses of chemotherapy directly to metastatic melanoma in the liver, most specifically from uveal melanoma. This targeted delivery avoids systemic toxicity that is more common with other types of chemo. That's great to hear that Mayo in Jacksonville is providing this service and it's been so beneficial.

You sound very optimistic and active. May I ask if you have any other words of advice to share?

Hi, I am Nancy. I was diagnosed with Eye melanoma in Sept 2022, went thru UV proton beam treatment at UF here is Jacksonville, FL. Then in late 2023, I did immune treatments for my melanoma metastasized to my liver . I had bad reactions to these treatments, so was referred to Moffitt Cancer Center in Tampa for PHP treatments, chemo directly to the liver every 2 months, starting in Aug 2024. I have finished in June 2025 my last #6 PHP treatment to my liver. Liver tumors significantly shrunk! Mayo In Jacksonville now does this PHP treatment. Even though I lost my vision in the one eye and now have a prosthetic eye, I am still staying positive and enjoy playing pickleball. Living every day to the fullest.

Hi Chanda, Thanks for reaching out. I do not have FMD. Most likely high blood pressure caused the tear in my ascending aorta. Ellen

Hi Ellen, was your aortic dissection related to fibromuscular dysplasia? I have both FMD and melanoma history. (my dissection was vertebral artery that led to strokes)

Yes. Participation sounds helpful. Thank you so much for taking the time to send a thoughtful and thorough message. Ellen

@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/?filter%5Bparent_event%5D=9449

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

Hi, I am Ellen. I have metastatic melanoma MUP(unknown primary source). I was diagnosed last spring. I’ve had two immunotherapy sessions. I also have stage 0 bladder cancer. I am a survivor of aortic dissection (open heart surgery) June 2024. Immunotherapy caused a skin reaction (rash and itching). My doctors tell me I look great! So what? I am not a happy camper these days.

@kmcginnis
Mayo has outstanding dermatologist care and surgeons. I am not sure which one you are seeking to consider.

I go to Mayo Jacksonville. Although I have not had Melanoma mine have been BCC and SCC I di did have MOHS surgery on all of them.

My primary care doctor at Mayo just had surgery on his arm for Melanoma. So when you think you need more of a specialty type medical care provider and specialist you can't go wrong at Mayo.