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Desmoplastic Melanoma
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Desmoplastic Melanoma

› Forums › General Melanoma Community › Desmoplastic Melanoma

  • Post
    • September 9, 2013 at 9:30 pm
    OpalSay
    Participant

      I was just recently diagnosied with Desmoplastic Melanoma. Don't really know to much about it, or any specifics. All I know that its very rare and usually happens in elderly males. I am a 28 year old female. I am going in for surgery Sept. 13 2013 for removal and to biopsy my lymph nodes. Other than that, I really have no idea what is going on or what to expect from that. I found one other person who has been through this, but it wasn't as big or had to go through the lymph node biopsy. They told me the staging will come after the lymph node biopsy as well. 

       

      If any of you have any more information on what to expect, I would greatly appreciate it. 

      Also, they say melanoma isn't painful but mine hurts so bad, and makes my whole arm hurt. It also turns bright red and a large area around the lesion gets fire hot to the touch. It also feels like someone is burning my arm with a cigarette. I have been keeping track of the lesion for about two years now, but not sure how long it has actually been there. I started to keep track once I noticed it wasn't getting smaller, but was getting bigger and bigger. 

       

      Thanks

      Opal 

    Viewing 5 reply threads
    • Replies
        • September 13, 2013 at 12:38 am
        Tina D
        Participant

          Hi Opal, I am so sorry you are going through this. Last thing anyone expects at your young age. I do not know anything about desmoplastic melanoma or how it differs. As you say, you will know much more after the lymph node biopsy and can then begin to gather whatever information you may need. Where is it on your arm? The lymph node biopsy I do have experience with and from a surgery recover standpoint it is not difficult, it takes a while to regain full range of motion depending on how many nodes are removed.

          Wish I could answer more questions for you, but I think it just depends on what you find out. Do you have someone to go with you to the hospital? Do you know if they plan to keep you overnight?

          Best wishes to you and please let us know how you are doing after your surgery.

          Sorry you have any reason to be here 🙁

          Tina

          • September 13, 2013 at 12:38 am
          Tina D
          Participant

            Hi Opal, I am so sorry you are going through this. Last thing anyone expects at your young age. I do not know anything about desmoplastic melanoma or how it differs. As you say, you will know much more after the lymph node biopsy and can then begin to gather whatever information you may need. Where is it on your arm? The lymph node biopsy I do have experience with and from a surgery recover standpoint it is not difficult, it takes a while to regain full range of motion depending on how many nodes are removed.

            Wish I could answer more questions for you, but I think it just depends on what you find out. Do you have someone to go with you to the hospital? Do you know if they plan to keep you overnight?

            Best wishes to you and please let us know how you are doing after your surgery.

            Sorry you have any reason to be here 🙁

            Tina

            • September 13, 2013 at 12:38 am
            Tina D
            Participant

              Hi Opal, I am so sorry you are going through this. Last thing anyone expects at your young age. I do not know anything about desmoplastic melanoma or how it differs. As you say, you will know much more after the lymph node biopsy and can then begin to gather whatever information you may need. Where is it on your arm? The lymph node biopsy I do have experience with and from a surgery recover standpoint it is not difficult, it takes a while to regain full range of motion depending on how many nodes are removed.

              Wish I could answer more questions for you, but I think it just depends on what you find out. Do you have someone to go with you to the hospital? Do you know if they plan to keep you overnight?

              Best wishes to you and please let us know how you are doing after your surgery.

              Sorry you have any reason to be here 🙁

              Tina

              • May 5, 2014 at 10:31 pm
              life is sweet
              Participant

                Hi Opal, I had desmoplastic melanoma as well.  I did not fit the description of  elderly male either as a 32 year old female.  I had desmoplastic melanoma in my left jaw on the mental nerve in the mental foramen.  I had my lower jaw removed and replaced with my left fibula.  My tumor was also painful at times and always uncomfortable.  It would itch like crazy internally so that i could not relieve the itch, it would tingle (like when you sit on your leg for too long), it would burn, and at times it would have sharp pains.

                How did your biopsy and surgery go? Are you cancer free now?

                I look forward to hearing from you I went to the Miles for Melanoma walk yesterday in Los Angeles hoping to meet someone else that has had, have or heard of desmoplastic melanoma and had no luck.

                 

                  • August 21, 2014 at 2:59 pm
                  MacMac
                  Participant

                    Hi!  Sorry to butt in on the convo.  I was recently diagnosed with Desmoplastic Melanoma as well and I can't really seam to find much information about it (other than it happens to old men).  I guess I am just wondering first off how all of your progress is going and second have you found any good resources for information?

                    • October 31, 2014 at 8:29 pm
                    life is sweet
                    Participant

                      Hi MacMac, yeah I call it my old man cancer.  I was diagnosed at 32.  I have not found very much information. Only that it is very rare and usually found in elderly men.  My progress has been good.  I have been cancer free since my first surgery in April 2012.  I have my six month scans again next month, so getting the anxiety that I get every six months.  My desmoplastic melanoma was in my left lower jaw.  So I had a free flap done which uses my fibula, tissue and skin to reconstruct my jaw.  I then had 30 treatments of radiation. After radiation, I took a break from reconstruction to have a baby.  I was newly married I was diagnosed exactly one month before our wedding.  My first surgery was the day after we returned from our honeymoon.  Now that we have a healthy, happy little girl we have been finishing the reconstructive portion of recovery the goal is to eventually have teeth on my lower left side and fix a large gap in my lips.  I had a surgery in April 2014 and 30 treatments in a hyperbaric chamber.  I had another surgery in September 2014.  I have another scheduled for December.  Some days are harder than others; I wonder how much longer until life is “normal” again and not revolving around surgeries and doctor appointments.  

                       

                      How are you doing?

                      • October 31, 2014 at 8:29 pm
                      life is sweet
                      Participant

                        Hi MacMac, yeah I call it my old man cancer.  I was diagnosed at 32.  I have not found very much information. Only that it is very rare and usually found in elderly men.  My progress has been good.  I have been cancer free since my first surgery in April 2012.  I have my six month scans again next month, so getting the anxiety that I get every six months.  My desmoplastic melanoma was in my left lower jaw.  So I had a free flap done which uses my fibula, tissue and skin to reconstruct my jaw.  I then had 30 treatments of radiation. After radiation, I took a break from reconstruction to have a baby.  I was newly married I was diagnosed exactly one month before our wedding.  My first surgery was the day after we returned from our honeymoon.  Now that we have a healthy, happy little girl we have been finishing the reconstructive portion of recovery the goal is to eventually have teeth on my lower left side and fix a large gap in my lips.  I had a surgery in April 2014 and 30 treatments in a hyperbaric chamber.  I had another surgery in September 2014.  I have another scheduled for December.  Some days are harder than others; I wonder how much longer until life is “normal” again and not revolving around surgeries and doctor appointments.  

                         

                        How are you doing?

                        • October 31, 2014 at 8:29 pm
                        life is sweet
                        Participant

                          Hi MacMac, yeah I call it my old man cancer.  I was diagnosed at 32.  I have not found very much information. Only that it is very rare and usually found in elderly men.  My progress has been good.  I have been cancer free since my first surgery in April 2012.  I have my six month scans again next month, so getting the anxiety that I get every six months.  My desmoplastic melanoma was in my left lower jaw.  So I had a free flap done which uses my fibula, tissue and skin to reconstruct my jaw.  I then had 30 treatments of radiation. After radiation, I took a break from reconstruction to have a baby.  I was newly married I was diagnosed exactly one month before our wedding.  My first surgery was the day after we returned from our honeymoon.  Now that we have a healthy, happy little girl we have been finishing the reconstructive portion of recovery the goal is to eventually have teeth on my lower left side and fix a large gap in my lips.  I had a surgery in April 2014 and 30 treatments in a hyperbaric chamber.  I had another surgery in September 2014.  I have another scheduled for December.  Some days are harder than others; I wonder how much longer until life is “normal” again and not revolving around surgeries and doctor appointments.  

                           

                          How are you doing?

                          • August 21, 2014 at 2:59 pm
                          MacMac
                          Participant

                            Hi!  Sorry to butt in on the convo.  I was recently diagnosed with Desmoplastic Melanoma as well and I can't really seam to find much information about it (other than it happens to old men).  I guess I am just wondering first off how all of your progress is going and second have you found any good resources for information?

                            • August 21, 2014 at 2:59 pm
                            MacMac
                            Participant

                              Hi!  Sorry to butt in on the convo.  I was recently diagnosed with Desmoplastic Melanoma as well and I can't really seam to find much information about it (other than it happens to old men).  I guess I am just wondering first off how all of your progress is going and second have you found any good resources for information?

                            • May 5, 2014 at 10:31 pm
                            life is sweet
                            Participant

                              Hi Opal, I had desmoplastic melanoma as well.  I did not fit the description of  elderly male either as a 32 year old female.  I had desmoplastic melanoma in my left jaw on the mental nerve in the mental foramen.  I had my lower jaw removed and replaced with my left fibula.  My tumor was also painful at times and always uncomfortable.  It would itch like crazy internally so that i could not relieve the itch, it would tingle (like when you sit on your leg for too long), it would burn, and at times it would have sharp pains.

                              How did your biopsy and surgery go? Are you cancer free now?

                              I look forward to hearing from you I went to the Miles for Melanoma walk yesterday in Los Angeles hoping to meet someone else that has had, have or heard of desmoplastic melanoma and had no luck.

                               

                              • May 5, 2014 at 10:31 pm
                              life is sweet
                              Participant

                                Hi Opal, I had desmoplastic melanoma as well.  I did not fit the description of  elderly male either as a 32 year old female.  I had desmoplastic melanoma in my left jaw on the mental nerve in the mental foramen.  I had my lower jaw removed and replaced with my left fibula.  My tumor was also painful at times and always uncomfortable.  It would itch like crazy internally so that i could not relieve the itch, it would tingle (like when you sit on your leg for too long), it would burn, and at times it would have sharp pains.

                                How did your biopsy and surgery go? Are you cancer free now?

                                I look forward to hearing from you I went to the Miles for Melanoma walk yesterday in Los Angeles hoping to meet someone else that has had, have or heard of desmoplastic melanoma and had no luck.

                                 

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