Melanoma & Skin Cancer support: Introduce yourself and connect

I’m now in my second and final week of my 2 weeks on, one week off, and two weeks on applying Clobetasol to my EPD. For the first 2 weeks I finally decided to use Vaseline. After those 2 weeks the EPD lesions slid off my scalp, and when I went to my derma for a two week check he said I could go back to using my ketoconazole ant-fungal shampoo once again. The Clobetasol has worked wonders (so far), but EPD has a high chance of reoccurrence, so I closely monitor my scalp every day. If it pops on in another area, then the bottle of Clobetasol solution will be at the ready.

@pamjm: I'm glad you found us as well! But I'm sorry to hear about what brought you here; that's a very rare and painful condition. Since you're looking to connect with others who share this, I'd like to suggest you start a separate post with that specific diagnosis of Erosive Pustular Dermatosis of the Scalp in the group Skin Health: https://connect.mayoclinic.org/group/skin-conditions/. EPDS is considered a skin condition so you may find people within that community. Providing your experience could be of tremendous help to others as you look to others as well.

@19sfca47: This is helpful information. I just suggested to @pamjm to consider starting a topic specifically on EPDS in the skin health group Skin Health: https://connect.mayoclinic.org/group/skin-conditions/ as others with this condition may be more likely to find it there rather than here amongst the melanoma and skin cancer groups. Your experiences could definitely benefit others!

@grammato3

EPDS is a fairly rare condition usually occurring in bald males over 70 years old who have had a history of sun induced skin cancer. Nonetheless, I would welcome a topic on it. I wake up every morning looking for signs of a new EPD break out. It’s a crazy way to live, but. . . .

Hi, I'm new to this support group & happen to be a retired nurse & now 80 's. 9 1/2 yrs ago was diagnosed with a rare uveal cancer of the eye grade 2. I see a retinal specialist & a melanoma oncologist @ Carbone Caner center @ UW. I initially had a radial active plaque put on the retina surgically for 5 days & then removed..I could I have had a enunciation of eye but with thought this would not be a cure as melanoma travels via lymph & blood.
Since then had multiple injections for retinal edema . Two yrs ago it showed up in my breast but no other places via PET scan. I had a lumpectomy. 1 yr later it was in my lungs growing slowing with very little symptoms. Oncologist immediately started on immunotherapy Opdualag q month but quit working in 11 months. I developed uveitis in my bad eye & had few months before I made a decision & commitment to a newer immunotherapy drug (2022) Kimmtrax. I genetically was a match & for those that had uveal melanoma. It has to be given q week & the 1st 3 in the hospital for 24 hrs to monitor side effects which were scarey. I've now had 7 weekly injections. I know this is lengthy but wonder if there others out there since this so rare & your having this Kimmtrax? We live almost 3 hours away... so you understand What a commitment this is.
llr
Away

@larockey1935: May I extend a welcome to Mayo Clinic Connect - as a mentor here, a retired RN myself and as a metastatic melanoma patient, although I've neither treated for uveal cancer nor with Kimmtrax. However, I've located a thread that does address these specifics where you may find some helpful discussions on this: https://connect.mayoclinic.org/discussion/malignant-melanoma-of-the-choroid-in-the-eye/
Are you able to post there?

@grammato3
Yes, I can post there,

Hi, I also have uveal melanoma and was diagnosed in Sept 2022. Been thru lots of treatments since it metastasized to my liver in 2024. Since then had chemo to my liver every 2 months for 1 year which killed the tumors in my liver. Immune therapy didn’t work for me for I had severe side effects. In the wack-a- mole stage now. The melanoma shows up somewhere else we treat with surgery or radiation and wait to see where it goes next. Been to 5 other places since my liver, including having my eye removed. All good, feel great, even with those nasty cancer cells still floating around. There is a new chemo pill that is going thru FDA approval now specific for uveal melanoma. Supposedly to be available early next year, according to my oncologist at Mayo. Will go on this when it is available. All the best. Hang in there

I have malignant melanoma 0.8 Beslow depth (stage one) on my nose. Dermatologist recommends Mohs surgery but saying I will need a forehead flap. I absolutely do not want to go through that at my age of 74. Are there any other options or treatments. PET scan was good, removed 3 sentinel lymph nodes, they were clear. Do you have any suggestions for treatment other than forehead flap surgery?

@vickiegoins: I see this is your first time posting at Mayo Clinic Connect so as a mentor here and as one who has also treated for malignant melanoma I'd like to extend a welcome to you. I remember feeling utterly devastated when I got my diagnosis, at age 63, that I had this malignancy and would require a wide local excision with reconstruction as the lesion was on my cheek, adjacent to my nose. I did undergo the procedure at a surgicenter about 2 months after diagnosis.

Of the three types of skin cancer - basal cell (BCC), squamous cell (SCC) and melanoma - the latter is the most serious due to the potential to spread to distant organs, even in cases where it may appear to bypass the lymph nodes. Therefore, there is a great risk of leaving malignant melanoma untreated due to the great potential for metastasis and mortality. With early intervention, such risk can be reduced tremendously.

This explains more about melanoma including the rationale for surgery: https://mcpress.mayoclinic.org/cancer/understanding-melanoma-treatment-options-and-how-they-work. You can see that not only does the lesion itself need to be excised, but a portion surrounding it to be certain all the cancerous cells have been removed and the margins remain clear; this is performed in hopes of preventing further spread that could not be ascertained by any other method (such as radiation). Following surgery, other interventions may be utilized, especially if the melanoma has been found to have metastasized.

You have referenced your age, which I see is not substainally older than myself now, as a reason to to avoid this type of surgery. Can you tell me more about why you feel this way?