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Epidermatropic Metastatic Melanoma?
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Epidermatropic Metastatic Melanoma?

› Forums › General Melanoma Community › Epidermatropic Metastatic Melanoma?

  • Post
    • March 17, 2019 at 3:05 am
    Debbiem
    Participant

      Hi everyone

       

      I’m reaching out to see if anyone has been diagnosed with or heard of anyone with Epidermatropic Metastatic Melanoma?

      I have had many melanomas in situ plus at least 1 invasive melanoma since July 2018.  Original melanoma diagnosis was in 2015. 

      My oncologist wants to try Opdivo for 12 months. I’m at City of Hope with a melanoma specialist and they have not seen a case like mine. 

      I am hoping to connect with someone who has been down this road or can give any advice or insight. 

      Thank you!!

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        • March 17, 2019 at 10:22 am
        Bobman
        Participant

          Hi Debbie,

          Don't often see too many people here with high numbers of primaries.  I'm up to 11 now. My first four had depths from .5-.8 , and my last seven in a row were all insitu. Toss in probably 50 other severely atypicals I've had removed, and I can say I'm being held together with a lot of scar tissue these days! I've done my share of research on epidermatropic mets, and as far as everything I have read, I should at least have it ruled out as a diagnosis. The description in all the literature fits me to a tee. My problem has been in the unwillingness of any of my oncologists,  and the lack of choices of differing opinions to help me resolve exactly what's going on. They are happy to scan me regularly,  get ambiguous results every time,  re-scan, and repeat.  This has been an extremely frustrating situation for me for some time now. I've been limited by providers that accept my insurance,  and the fact there are no specialists where I live. I actually have my house for sale now in order to get the funds needed to get to a specialist so I can get some answers. The fact you are working with a specialist who is offering a treatment with one of the newer drugs sounds good to me.  I'm hoping to get some options soon for myself as well.  I don't think for a second I've seen my last tumor. 

          I'd do what's being offered to you in a heartbeat,  and wish you well in your fight .

          Aloha, 

          Bob

            • March 17, 2019 at 10:26 pm
            Debbiem
            Participant

              Hi Bob,

               

              Thank you so much for responding. I’m so sorry to hear about your journey. We must look similar with all of our battle scars. When people see me they think I was burned or in a bad accident. 🙂

              The specialists out here have never seen this and have checked throughout the US for another case similar to mine without success. I will let them know there is a similar case. They have not diagnosed me with epidermatropic officially because of how rare it is and they don’t have good data for it. I went to 2 of the top US hospitals and they told me the same thing- they basically won’t diagnose it due to lack of medical data. It’s so rare especially because my melanomas have been amelanotic.  It sounds like that is what is happening on your end too- the doctors don’t have enough data to really make an official diagnosis.

              I hope that my treatment will work so they can use it to help others. I start in June and will keep you posted. Maybe your doctor can connect with mine. 

              I pray you are able to get good health care and the right treatment to help. I’m cheering for you. 

              Thank you again!

              Debbie

              • March 19, 2019 at 7:22 am
              Bobman
              Participant

                Yeah, whether it's just a weird anomaly of DNS, or truly mets to the epidermis I don't know. But as I'm sure you've been told, once you start producing numerous insitu's all the current thinking is to rule it out. I don't know how they would actually determine if it is mets. I had one oncologist scratch his chin and wonder aloud if maybe I had actually metastasized to the epidermis after about my ninth primary. But he was mostly focused on wanting to see something in a scan somewhere else before he would offer any treatment. But he is no melanoma specialist. And I get the same thing like you do that everyone says we've never seen this before. Please let us know how it goes for you. I can use the information for future warfare.

                Good luck!

                Bob

                • April 4, 2019 at 3:59 pm
                Debbiem
                Participant

                  Hi Bob 

                  I spoke with my Oncologist and she would be happy to talk to you. She was surprised to hear someone else has what I have. 

                  I can email you her contact info if you are interested. Please let me know. 

                  take care

                  Debbie

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