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Desmoplastic Melanoma Diagnosis — Need Info!
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Desmoplastic Melanoma Diagnosis — Need Info!

› Forums › General Melanoma Community › Desmoplastic Melanoma Diagnosis — Need Info!

  • Post
    • May 18, 2012 at 2:11 am
    texaninlouisiana
    Participant

       

      Good Evening – new poster (unfortunately) wanting to get some hopefully 1st or 2nd hand experience with desmoplastic melanoma.

       

      Good Evening – new poster (unfortunately) wanting to get some hopefully 1st or 2nd hand experience with desmoplastic melanoma.

      My father was diagnosed last Friday, had the WLE and SLNB on Wednesday and everything is going along smoothly — including the lymph nodes visibly not looking any different. We will get the official path report back next week so needless to say, we are praying it's not a combined form of DM, instead of pure.

      The tumor was 2.7mm thickness, 2cm WLE was done, and SLNB with visibly clear sentinal node removed.

      My question is for anyone who has had experience with this sub-type. I already know quite a bit about it by hours of research and findings but I just haven't found any credible personal info on any forums — both here and melanomaintl.org — it's really frustrating. My father has really good docs treating him, including one of the best oncologists around but I get a feeling that this type is not something they have dealt with before which is unsettling; not to mention my father trusts them completely. We have resources in the Houston area, meaning MD Anderson is somewhere we could go but he is so worried about the convenience factor (family is in Northeast Texas) of traveling, etc — it's very frustrating.

      Anyways, back on point…I'm reaching out to this larger forum to see if anybody has had experience with this. The only things I've read on here are other questions from folks wondering the same thing as me.

      Thank You All in advance.

    Viewing 2 reply threads
    • Replies
        • May 18, 2012 at 3:03 am
        noisy77
        Participant

          Hello –

           

          I don't know much about demosplastic melanoma -but getting a second opinion is very important.  With my mom – we went to both Sloan (Dr. Chapman) and Dana Farber (Hodi) (which required travel) – they were able to consults and make recommendations on treatment but do the day to day treatment locally at UMass which was close to my mom's home.

          Its very important to have a melanoma specialist do a consult and MD Anderson has some of the best melanoma drs in the US.

          Elizabeth

            • May 18, 2012 at 10:07 pm
            Kathy of Massachusetts
            Participant
              Yes it is rare I also have a form of desmoplastic melanoma. I have neurotrophic melanoma . 1.32 depth1 mitosis. On my back September 2008. I don’t want to frighten you but I had SLNB and WLE all clear and 3’month skin checks. Nothing ever showed unusual. Last July 2011 I had a seizure in my left arm. Mri and ct scans revealed my melanoma had metastasized to my brain, liver and abdomen lesions. Been fighting ever since. I have had WBR, proton therapy, Yervoy in the fall 3 times before switching to Zelboraf. Still on Zelboraf to this date may 18 , 2012. I also being reintroduced to Yervoy had my 3rd infusion last Thursday and my hopeful final number4 on may 31. Ct and brain MRI are scheduled for mid June. Hoping for positive results. That is my history with this disease. Never spread to skin or lymph nodes but internal spread is not good either.
              Kathy D
              • May 19, 2012 at 2:54 am
              texaninlouisiana
              Participant
                Well that is particularly unsettling Kathy. My father’s was a 2.7mm. I’m hoping to God that the mitotic rate is nill and of course the clear SLND. I guess we should request for scans upfront to make sure it hasn’t spread?? We haven’t even got the official path results from the surgery back yet and I’m pretty much freaking out now after reading your response.

                How long did you have your primary before you caught it? (or do you have any idea?) . This thing obviously grew in a matter of 5 months for my dad because he was checked in December. The team of docs are going about it step by step and will most likely refer if needed.

                Thank you for your response.

                • May 19, 2012 at 1:13 pm
                Kathy of Massachusetts
                Participant
                  Well the primary was on my back and my husband mentioned it looked odd I may of 2008 I had my primary drs appt in sept so I told him I would her to look at it then. She did and had me go to a dermotoligist within two weeks. I had never the need. To see one prior. They removed it immediately in mid sept. It was sent to a pathologist for biopsy test. And then I was sent to a melanoma team in Boston am for second opinion. I was offered the SLNB which showed drainage under both arms and the left flank. When every thing came back clear they said I only needed to do monthly skin checks and I visited a dermatologist once every 3 months. I did have some blood work and chest X-ray in 2008. My melanoma was supposedly low risk to spread. They checked my lymph nodes every visit for lumps. That is how it normally spreads, not sure why mine skipped the lymphs and no other primaries showed up. Just luck of the draw I guess. But with the new therapies they have come out with I feel fortunate to feel as good as I do with options being offered. I am sorry I scared you that was not my intention. I only wanted to share because you specifically asked about demos plastic which I know from my own experience so few can relate. Just try and educate yourself so you will be ready to ask questions from dr. This disease is not an easy one to fight but it can be. So read and learn quickly hopefully you will never need the knowledge. Please be sure to keep us updated I am sorry you have to join our club.
                  Kathy D
                  • May 19, 2012 at 1:13 pm
                  Kathy of Massachusetts
                  Participant
                    Well the primary was on my back and my husband mentioned it looked odd I may of 2008 I had my primary drs appt in sept so I told him I would her to look at it then. She did and had me go to a dermotoligist within two weeks. I had never the need. To see one prior. They removed it immediately in mid sept. It was sent to a pathologist for biopsy test. And then I was sent to a melanoma team in Boston am for second opinion. I was offered the SLNB which showed drainage under both arms and the left flank. When every thing came back clear they said I only needed to do monthly skin checks and I visited a dermatologist once every 3 months. I did have some blood work and chest X-ray in 2008. My melanoma was supposedly low risk to spread. They checked my lymph nodes every visit for lumps. That is how it normally spreads, not sure why mine skipped the lymphs and no other primaries showed up. Just luck of the draw I guess. But with the new therapies they have come out with I feel fortunate to feel as good as I do with options being offered. I am sorry I scared you that was not my intention. I only wanted to share because you specifically asked about demos plastic which I know from my own experience so few can relate. Just try and educate yourself so you will be ready to ask questions from dr. This disease is not an easy one to fight but it can be. So read and learn quickly hopefully you will never need the knowledge. Please be sure to keep us updated I am sorry you have to join our club.
                    Kathy D
                    • May 19, 2012 at 1:13 pm
                    Kathy of Massachusetts
                    Participant
                      Well the primary was on my back and my husband mentioned it looked odd I may of 2008 I had my primary drs appt in sept so I told him I would her to look at it then. She did and had me go to a dermotoligist within two weeks. I had never the need. To see one prior. They removed it immediately in mid sept. It was sent to a pathologist for biopsy test. And then I was sent to a melanoma team in Boston am for second opinion. I was offered the SLNB which showed drainage under both arms and the left flank. When every thing came back clear they said I only needed to do monthly skin checks and I visited a dermatologist once every 3 months. I did have some blood work and chest X-ray in 2008. My melanoma was supposedly low risk to spread. They checked my lymph nodes every visit for lumps. That is how it normally spreads, not sure why mine skipped the lymphs and no other primaries showed up. Just luck of the draw I guess. But with the new therapies they have come out with I feel fortunate to feel as good as I do with options being offered. I am sorry I scared you that was not my intention. I only wanted to share because you specifically asked about demos plastic which I know from my own experience so few can relate. Just try and educate yourself so you will be ready to ask questions from dr. This disease is not an easy one to fight but it can be. So read and learn quickly hopefully you will never need the knowledge. Please be sure to keep us updated I am sorry you have to join our club.
                      Kathy D
                      • May 19, 2012 at 2:54 am
                      texaninlouisiana
                      Participant
                        Well that is particularly unsettling Kathy. My father’s was a 2.7mm. I’m hoping to God that the mitotic rate is nill and of course the clear SLND. I guess we should request for scans upfront to make sure it hasn’t spread?? We haven’t even got the official path results from the surgery back yet and I’m pretty much freaking out now after reading your response.

                        How long did you have your primary before you caught it? (or do you have any idea?) . This thing obviously grew in a matter of 5 months for my dad because he was checked in December. The team of docs are going about it step by step and will most likely refer if needed.

                        Thank you for your response.

                        • May 19, 2012 at 2:54 am
                        texaninlouisiana
                        Participant
                          Well that is particularly unsettling Kathy. My father’s was a 2.7mm. I’m hoping to God that the mitotic rate is nill and of course the clear SLND. I guess we should request for scans upfront to make sure it hasn’t spread?? We haven’t even got the official path results from the surgery back yet and I’m pretty much freaking out now after reading your response.

                          How long did you have your primary before you caught it? (or do you have any idea?) . This thing obviously grew in a matter of 5 months for my dad because he was checked in December. The team of docs are going about it step by step and will most likely refer if needed.

                          Thank you for your response.

                          • May 18, 2012 at 10:07 pm
                          Kathy of Massachusetts
                          Participant
                            Yes it is rare I also have a form of desmoplastic melanoma. I have neurotrophic melanoma . 1.32 depth1 mitosis. On my back September 2008. I don’t want to frighten you but I had SLNB and WLE all clear and 3’month skin checks. Nothing ever showed unusual. Last July 2011 I had a seizure in my left arm. Mri and ct scans revealed my melanoma had metastasized to my brain, liver and abdomen lesions. Been fighting ever since. I have had WBR, proton therapy, Yervoy in the fall 3 times before switching to Zelboraf. Still on Zelboraf to this date may 18 , 2012. I also being reintroduced to Yervoy had my 3rd infusion last Thursday and my hopeful final number4 on may 31. Ct and brain MRI are scheduled for mid June. Hoping for positive results. That is my history with this disease. Never spread to skin or lymph nodes but internal spread is not good either.
                            Kathy D
                            • May 18, 2012 at 10:07 pm
                            Kathy of Massachusetts
                            Participant
                              Yes it is rare I also have a form of desmoplastic melanoma. I have neurotrophic melanoma . 1.32 depth1 mitosis. On my back September 2008. I don’t want to frighten you but I had SLNB and WLE all clear and 3’month skin checks. Nothing ever showed unusual. Last July 2011 I had a seizure in my left arm. Mri and ct scans revealed my melanoma had metastasized to my brain, liver and abdomen lesions. Been fighting ever since. I have had WBR, proton therapy, Yervoy in the fall 3 times before switching to Zelboraf. Still on Zelboraf to this date may 18 , 2012. I also being reintroduced to Yervoy had my 3rd infusion last Thursday and my hopeful final number4 on may 31. Ct and brain MRI are scheduled for mid June. Hoping for positive results. That is my history with this disease. Never spread to skin or lymph nodes but internal spread is not good either.
                              Kathy D
                            • May 18, 2012 at 3:03 am
                            noisy77
                            Participant

                              Hello –

                               

                              I don't know much about demosplastic melanoma -but getting a second opinion is very important.  With my mom – we went to both Sloan (Dr. Chapman) and Dana Farber (Hodi) (which required travel) – they were able to consults and make recommendations on treatment but do the day to day treatment locally at UMass which was close to my mom's home.

                              Its very important to have a melanoma specialist do a consult and MD Anderson has some of the best melanoma drs in the US.

                              Elizabeth

                              • May 18, 2012 at 3:03 am
                              noisy77
                              Participant

                                Hello –

                                 

                                I don't know much about demosplastic melanoma -but getting a second opinion is very important.  With my mom – we went to both Sloan (Dr. Chapman) and Dana Farber (Hodi) (which required travel) – they were able to consults and make recommendations on treatment but do the day to day treatment locally at UMass which was close to my mom's home.

                                Its very important to have a melanoma specialist do a consult and MD Anderson has some of the best melanoma drs in the US.

                                Elizabeth

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