Melanoma & Skin Cancer support: Introduce yourself and connect

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

@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. . . .

@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!

@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.

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.

Glad to have found this group! I have a long history of SCC, but my real story is finally being diagnosed with EPDS (Erosive Pustular Dermatosis of the Scalp) after a MOHS and failed flap. It has been a long and painful journey, one that apparently never ends. I am currently weaning off 60mg Prednisone and Clobetasol. Horrible side effects. Hoping to find others with similar stories.

@19sfca47
Similar story! And “happy” to finally find a real person with my diagnosis. Long history of SCC and have done it all: Efudex cream, fluorouracil injections, t-Vec injections. My EPDS came as a result of MOHS and failed flap. It was 4 months before I finally got a diagnosis but this horrid disease had already “eaten” a huge portion of my scalp. Under control for now with mega Prednisone (with mega side effects) and Clobetasol. Weaning off 60mg Prednisone and replacing with Dapsone. Scarfs and wigs are my new style. Good luck with your journey, not fun for sure.

@jc76

I am sure your experience is the same with clobetasol. I just started using the clobetasol solution for a two week period. I opted for the solution because the cream congeals When the lesions come off I will not use Vaseline or Aquaphor - just too greasy and sticky. I bought some Tri Derma cream , and when the lesions fall off I will see how it works for clearing up the raw skin. Vaseline seems to be the knee jerk response from dermatologists, but trying to wipe it off can carry more bleeding, hence the cream.

@19sfca47
Can I asked you if the Clobetasol is what they call liquid chemotherapy.

If so I do have experience with this in treating a pre cancer area on my scalp twice. But did not want to pass on my experience with this unless the medication your are taking was the same thing I had to apply twice a day for 2 weeks. I know mine caused really deep red marking on my scalp but was warned it would.

When I have had SCC and BCC biopsies, MOHS surgeries I was told to apply Vaseline on it to help promote healing from inside and keep scabs from forming. Talk to your dermatologist about this. I will look for the tube that had my solution in it to confirm if I was using the same treatment as you are getting.

I spent decades growing up under the warm California sun, without a hat. Now that I’m an aging Baby Boomer, I have a head that looks like 40 miles of bad road – Mohs surgery, AK, SK, have had them all. Today my derma diagnosed me with erosive pustular dermatosis the size of an old 50 cent piece on the top of my scalp. He suggested clobetasol, starting with it twice a day for two weeks. What I’d like to know from people who have had this condition is how they treated it, and especially what they used to soften the lesions, so they come off without my scalp bleeding. AI gives me responses, but I'd rather hear from a real human. I take blood thinners, so I’ve dealt with plenty of scalp bleeding issues. I’m just so tired of the scabs. Thank you.