Melanoma & Skin Cancer support: Introduce yourself and connect

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/

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.

Hi! I was looking for a place that specializes in Melanoma and Mayo came up . Has anyone had multiple melanomas? My first one in 2022 was staged pt2a. The other 3 melanomas were the last 2 months but they are in Situ. I get more off suspicious spots biopsied tomorrow. My dermatologist has never seen this before. I also had 3 severely dysplastic moles so far, 2 BCC's. I just feel like more is going on. The last Melanoma WLE was last Thursday the path report says changes in lesion after biopsy and it abuts the lateral margin. They will probably need to redo the wle. Anyone experience this? Do you think I need a second opinion why this is happening? I don't think the place I current go specializes in Melanoma. Maybe I need genetic testing or a scan? Maybe I am just paranoid.

@jc76: Thank you for being so proactive in inquiring about and then sharing this information with us! I'll also inquire about here in Phoenix when I have my appointment next month. Maybe they'll have a better idea as to timeframe by then. Thanks again!

I could not find the message from mentor about what if I could post what I found from going on Mayo Jacksonville portal so put this in new discussion even though it is a past one on the new 3-D scanner.

Posted below is the information I got back from Mayo Dermatology Jacksonville. I did get additional information on this stating Rochester was only Mayo that had it now.
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Thank you for reaching out with your questions. Currently, Mayo Clinic Jacksonville does not have the 3-D scanner, but plans are in place for its future acquisition. We do not have a specific time frame for when it will be available. Once the scanner is operational, the protocol for its use will be established, and patients will be informed on how to request this service.

jc76: you're quite welcome! I see you've been a tremendous health care advocate for yourself and others, and I gather you've been quite pleased with the care you've received from multiple specialties at Mayo Jacksonville over the years. You're going on 20 years there!

I may have gotten my clinics mixed up with the 3D scanner in dermatology: in going through some past correspondence, it appears it's Rochester that already has it, with Jacksonville due to get one next (if it hasn't already) and Phoenix also in line. I have my initial consult in dermatology coming up myself next month in Phoenix where I'm treating in oncology so will be finding out more first hand to pass along at the end of next month -- unless you learn more about it first, then by all means please do bring me up to date!