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Desmoplastic Melanoma

Btrcup's picture
Btrcup
Posts: 287
Joined: Jun 2004

Hi all, I can usually be found in the colorectal cancer discussions (hubby dx), but I have a question for my boss. A year ago he had a pimple like bump on his ear. After it started to bleed, he went to docs. They did biopsy and found to be melanoma. They removed bottom portion of ear and several lymph nodes (which all tested negative). They are now discussing his options of preventive meds (he sees onc 11/18). The type of cancer he has is called desmoplastic melanoma. From what
I've read, it is rare. Is anyone familiar with this? Thanks for listening.

Linda (Baltimore)

Millsgloria
Posts: 3
Joined: May 2003

I am a 8 yr.surviror of desmoplaastic melanoma of palate.Had 1/2 of mouth removed,25 radiation treatments,then prosthesis made so I could eat,talk and drink. Am cancer free as far as I know.Radiation destroyed my salivary glands.Yes it is very rare.As far as Drs. could find out I was the 5th. in the world and the only and longest living surviror. They gave me 6 months to 1 yr. and thanks to their help, my Faith in God and my friends and family I am still going strong. Gloria Jean

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Craig_Griffin
Posts: 52
Joined: Feb 2009

Faith in God is the key. My cancer support group started with giving me a CD of new age music with a soothing woman's voice narrative to listen to once a day. I spoke out that I preferred not to listen to the CD any more, because I found my own Bible reading to be more soothing, and that for new age music I already had CD's by Enya that were relaxing. Any religiuos orientated discussions were at first "forbidden" in my support group. That was until my diagnosis after radiation was given as "cancer free" from stage 4 throat cancer. After being in this group for 6 months, I was told that at my next Oncologist appointment to ask the Doc again about the diagnosis, so I could quote every word- again it was "cancer free". After that for the first time I was aware of hugging began at the end of each cancer support group meeting. I am alive 8 years later, and glad to be. That is because only each individual person realizes why they want to fight on to live.   -Craig

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Kate1948
Posts: 5
Joined: Feb 2016

I'm new here, diagnosed with desmoplastic melanoma of the cheek back in February. It's already recurred. Three excisions and two skin grafts but there's still some at the deep margin.  I start 6 weeks of radiation soon. More nervous about this than any excisions and grafts, but it will cure me, I hope. 

Craig_Griffin's picture
Craig_Griffin
Posts: 52
Joined: Feb 2009

Kate, Hopefully your radiation target area will not be too extensive. I post mostly in Head & Neck cancer but am now here due to a new skin problem that was treated cryogenically at 200 below zero last week. We are waiting for blood test results, and continued treatment. My radiation was for stage 4 throat cancer and very extensive. I reacted well to radiation and chemotherapy. Always stay positive. 

Kate1948
Posts: 5
Joined: Feb 2016

Oh, Craig, thanks so much for responding. A voice in the wilderness! The radiation area is my whole left cheek to zap any outlier cells but the cancer remains in a concentrated area at the deep margin. So glad to hear you reacted well to radiation and chemo. I hope the deep skin freeze worked. Yes, always stay positive, and again, Thank You. 

Kate1948
Posts: 5
Joined: Feb 2016

Hello, Linda. I've just posted (July 2016) to see if I can find anyone else with desmoplastic melanoma. Mine is in my cheek. It hasn't spread to lymph nodes but is called in-transit because it's spreading along tiny nerves. (I think that's what's going on.) How are you? Did you ever find out more about DM? I'm happy to share what I know. Very best wishes.

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