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TVEC with mucosal melanoma of the mouth

Forums Mucosal Melanoma Community TVEC with mucosal melanoma of the mouth

  • Post
    Amy0223
    Participant
      I was diagnosed with mucosal melanoma of the right hard palate and left soft palate in October of 2019, after having just had my reconstruction from breast cancer. I was cancer free in August 2019. I have lupus and scleroderma, so my oncologist and rheumatologist did not want me to do immunotherapy or radiation. Chemotherapy has not shown to be effective with mucosal melanoma. Surgery was not an option due to the hard and soft palate being involved. I am BRAF negative and C-KIT negative.

      I started TVEC injections in my mouth in November 2019. This is the first time my oncologist at the James has tried this procedure in the mouth. I have not found anything anywhere that can give me any information about anyone out there that has had this treatment done in their mouth and the outcome. I have positive changes occuring, but they could not do a sentinel node biopsy due to the location, and the PET scan is not that reliable for detecting lymph nodes in that area. I did not have metastasis to any organs or brain at the time of the PET scan at the end of October.

      History: I went to my dentist after my mastectomy with a sore in my mouth in June 2019. She gave me medication for infection. Went back 3 weeks later and it was worse. She sent me to the periodontist, and a few weeks later he said he didn’t know what it was and was going to do a biopsy. My rheumatologist instead wanted it performed by a dermatologist. A few weeks later I went to my regular dermatologist who said that the area was too vascular and wanted a surgeon in their office to do it. A few days later I went in and he said the lesion looked vascular and no worries. Did the biopsy. He called me a week later and apologized because he said he only has seen two of these in his entire career, and mine was the second. It was a blow, because I knew how serious and aggressive this cancer is. It had grown significantly between June and October, when I was finally diagnosed.

      I am telling this story to help others who may not take a sore in their mouth seriously. I thought I had an infection, as well. Has anybody on this forum had mucosal melanoma and TVEC injections? Thank you!

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        casagrayson
        Participant
          Goodness, Amy. You just can’t catch a break with the medical issues! I’m so sorry. I don’t know anything about mucosal melanoma, so I can’t be of help there, but I just wanted you to know I’m thinking of you.

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            Amy0223
            Participant
              Thank you Susan. :)

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            Becky
            Participant
              Hi Amy. In 2009 my almost 21 year old son went to doctor because of a sore/lump on the tip of his tongue. The doctor was shocked when the biopsy came back as melanoma…having done tons of research I Know how rare oral melanoma is!! They were able to do a sentinel node biopsy and it had spread to one node. He did interferon for a year ( this was all that was offered at the time except possible radiation) . He has been NED for 10 years thankfully ( Altus he hasn’t had a scan in 5 years). Hoping the TVEC injections work for you! Hang in there
              Becky

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                Amy0223
                Participant
                  Thank you Becky! That is great news to hear. I hope that he continues to stay NED.

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