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Help with Desmoplastic Melanoma
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Help with Desmoplastic Melanoma

› Forums › Cutaneous Melanoma Community › Help with Desmoplastic Melanoma

  • Post
    • July 12, 2017 at 7:46 pm
    MTCowhand
    Participant

      Hello everybody, just joining this club no one wants to belong to with this second post today.  I was diagnosed with desmoplasatic melanoma, stage 2b, two months ago.  The experts here on this forum will recognize DM for being locally aggressive with a propensity to recur, but rarely metastatic on presentation.  As a result, local control with WLE backed by SLNB is the first order of business, which I did a month ago.  The lesion (on my scalp) turned out to be 6.6 mm deep, but otherwise totally devoid of other poor prognostic factors (low mitotic rate, no ulceration, no neurotropism, no vascular/lymph invasion — the SLNB was also negative — clear margins and so on).  However, because DM is rare in the melanoma world (4% of all cases), not a lot of research has been done on this beast insofar as to what to do after the WLE and SLNB, with basically two schools of thought splitting between "wait and watch" and using radiation in an adjuvant setting to further reduce the chances of recurrence (because they can lead to metastasis).  Each of these ideas are backed by a few small studies, most retrospective, hence my reason for posting today looking for some help.  Has anyone out there dealt with DM and, if so, how — wait and watch after surgery alone, or surgery followed by radiation?  Any advice/comments would be most welcome, my thanks.

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    • Replies
        • July 12, 2017 at 8:53 pm
        Casitas1
        Participant

          Hello Cowhand, I was diagnosed with Desmoplastic Neurotropic Melanoma back in late 2009 stage 2b. A very similar size tumor 5 mm. on my lower lip. My Bio pretty much sums up my journey. I watched and waited four years before reoccurrence. Many surgeries and decided against radiation due to location. If I can answer any of your questions let me know and glad to help. Had 4 nodes biopsies and all negative. 

          Best, Paul

            • November 30, 2017 at 8:36 am
            jam18
            Participant

              Hello all, 

              I was diagnosed with Desmoplastic Melanoma two weeks ago—8.5mm on my upper back. The depth frightens me but I am encouraged by a clean PET scan last week. Today I had the SNLB and WLE. Now I wait so I can be staged—Stage IIB until I receive the pathology report. How is everyone doing? Are you currently in treatment? 

              Thank you,

              Jamie

               

            • July 12, 2017 at 11:01 pm
            CajunEagle
            Participant

              Yes, I have Desmoplastic Melanoma….stage 3-B (I think), and am currently using Keytruda Immunotherapy treatment.  This is my third time in 3 years to have Melanoma in the lower right jaw and right ear area.  Surgeons took my right ear…ear canal….and Mastoid bone and some nerves both above and below my right eye.  I can't have radiation due to having sooooo much of it back in 09 when I had left Tonsil Cancer.  Amazingly, the Keytruda has really no side effects (for me, anyway) except some tiredness a couple of days after infusion.  Infusions are every three weeks for the next two years is the protocol, and I'll have my third on the 31st of July.  Tumour is about the size of a quarter on nerves near my right jaw hinge.  Scans will be taken after every four infusions to check on progress or lack of progress.  Go get em T-Cells.

              • July 13, 2017 at 9:56 am
              Nicky
              Participant

                I was diagnosed with a Desmoplastic Melanoma in 2005, 3.55 mm depth, no regression, some lymph infiltrate.   The surgeons said that they treated it like a soft tissue sarcoma and it is not unusual for them to be quite deep when presented. I have had various other primaries, one superfical spreading melanoma in situ spreading to my lymph nodes in my groin for which I received radiation therapy in 2001. Given my history I pushed to get radiation therapy on the DM to avoid local recurrence.  To date, I have had no further issues and I am currently NED.  

                  • July 13, 2017 at 7:34 pm
                  MTCowhand
                  Participant

                    Hellos Paul, Larry and Nicky….kind thanks for your informative responses, really appreciate it, and, Paul, for your offer to contact you if I have other questions.  I get the feeling that the radiation option in treating DM is kind of situational, dependent on many factors encompassing both lesion and patient individual characteristics.  I have my first visit with an oncologist tomorrow, so your responses are timely and very helpful.  Thanks again.

                    • July 14, 2017 at 6:15 am
                    Casitas1
                    Participant

                      Yeah, each time i was offered radiation I was NED after surgery. The reason was to mop up any left over Mel cells.

                      Best, Paul

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