Spindle cell rectal melanoma

Forums General Melanoma Community Spindle cell rectal melanoma

  • Post
    Chantel
    Participant

      My father was just diagnosed with recal spindle cell melanoma stage 2. He is undergoing surgery in one week – colectomy and removal of rectum with a stoma and bag placement (colostomy). From what I have read even with Surgey this is a bad tumor.

      Are there any other treatments he should be seeking after surgery- chemo, radiation, immunotherapy or gene therapy available? Any advice on this tumor, treatment and prognosis is appreciated

      thank you. 

    Viewing 5 reply threads
    • Replies
        CHD
        Participant

          Hi Chantel,

          I'm so sorry to hear about your dad's diagnosis.  It's a scary time and I would be doing the same, trying to gather as much information as possible.  Rectal is a form of mucosal melanoma, which is much less common than the cutaneous form.  The prognosis for this type of melanoma does tend to be worse than for cutaneous, though it sounds like he does not have lymph node involvement at stage 2, assuming it is diagnosed the way I am familiar, with stage 3 indicating lymph node involvement.  That is always a good thing, but I am uncertain whether your dad would be offered adjacent therapies at stage 2 for rectal melanoma.

          Sorry I can't be more helpful but I do hope your dad is being seen at one of the major cancer centers.  They are especially well informed of the best treatments, and this is an area that is evolving and changing rapidly.  It is actually a hopeful time for melanoma patients, though it is a bit more challenging for those of us with the mucosal form since research is more scarce.  Your best source of information will be the specialists treating your father, and I would recommend not relying too much on stories off the internet or information dated much past the last few years as, again, this is a field that has been changing rapidly.

          Best of luck to your dad!

          CHD
          Participant

            Hi Chantel,

            I'm so sorry to hear about your dad's diagnosis.  It's a scary time and I would be doing the same, trying to gather as much information as possible.  Rectal is a form of mucosal melanoma, which is much less common than the cutaneous form.  The prognosis for this type of melanoma does tend to be worse than for cutaneous, though it sounds like he does not have lymph node involvement at stage 2, assuming it is diagnosed the way I am familiar, with stage 3 indicating lymph node involvement.  That is always a good thing, but I am uncertain whether your dad would be offered adjacent therapies at stage 2 for rectal melanoma.

            Sorry I can't be more helpful but I do hope your dad is being seen at one of the major cancer centers.  They are especially well informed of the best treatments, and this is an area that is evolving and changing rapidly.  It is actually a hopeful time for melanoma patients, though it is a bit more challenging for those of us with the mucosal form since research is more scarce.  Your best source of information will be the specialists treating your father, and I would recommend not relying too much on stories off the internet or information dated much past the last few years as, again, this is a field that has been changing rapidly.

            Best of luck to your dad!

            CHD
            Participant

              Hi Chantel,

              I'm so sorry to hear about your dad's diagnosis.  It's a scary time and I would be doing the same, trying to gather as much information as possible.  Rectal is a form of mucosal melanoma, which is much less common than the cutaneous form.  The prognosis for this type of melanoma does tend to be worse than for cutaneous, though it sounds like he does not have lymph node involvement at stage 2, assuming it is diagnosed the way I am familiar, with stage 3 indicating lymph node involvement.  That is always a good thing, but I am uncertain whether your dad would be offered adjacent therapies at stage 2 for rectal melanoma.

              Sorry I can't be more helpful but I do hope your dad is being seen at one of the major cancer centers.  They are especially well informed of the best treatments, and this is an area that is evolving and changing rapidly.  It is actually a hopeful time for melanoma patients, though it is a bit more challenging for those of us with the mucosal form since research is more scarce.  Your best source of information will be the specialists treating your father, and I would recommend not relying too much on stories off the internet or information dated much past the last few years as, again, this is a field that has been changing rapidly.

              Best of luck to your dad!

              arthurjedi007
              Participant

                Oh rectal as in anal melanoma? A friend has that. He did surgery but not as drastic as what you describe with the bag. Surgery didn't get it all so they did radiation. Scans including a pet then showed he was clear. They gave him some type of pills but 3 months or so later the Mel showed up in his lungs so now he is on yervoy.

                Artie

                arthurjedi007
                Participant

                  Oh rectal as in anal melanoma? A friend has that. He did surgery but not as drastic as what you describe with the bag. Surgery didn't get it all so they did radiation. Scans including a pet then showed he was clear. They gave him some type of pills but 3 months or so later the Mel showed up in his lungs so now he is on yervoy.

                  Artie

                    Chantel
                    Participant

                      Thank you all for your responses, I really appreciate everyones help. 

                      As an update, sorry it took so long, but I have been trying to deal with everything recently.

                      My father was scheduled for surgery and prior to surgery we were notified of disease progression so the surgery was canceled- he was then started on ipilimumab/yervoy and unfortunately had no response- the repeat scans showed significant disease porgression- lymph node, gut, liver, and lung metastasis. He also developed renal toxicity and treatment was stopped.

                      So as you can see, things are not going in a good direction. He clinically is getting much worse, he underwent radiation to his primary tumor site (rectum) due to significant growth in the tumor which was causing pain. He was also started on another treatment (pembrolizumab) and continues to look and feel worse.

                      All of the options and efforts provided to him just seem to be failing

                      any advice?

                      Chantel

                      Chantel
                      Participant

                        Thank you all for your responses, I really appreciate everyones help. 

                        As an update, sorry it took so long, but I have been trying to deal with everything recently.

                        My father was scheduled for surgery and prior to surgery we were notified of disease progression so the surgery was canceled- he was then started on ipilimumab/yervoy and unfortunately had no response- the repeat scans showed significant disease porgression- lymph node, gut, liver, and lung metastasis. He also developed renal toxicity and treatment was stopped.

                        So as you can see, things are not going in a good direction. He clinically is getting much worse, he underwent radiation to his primary tumor site (rectum) due to significant growth in the tumor which was causing pain. He was also started on another treatment (pembrolizumab) and continues to look and feel worse.

                        All of the options and efforts provided to him just seem to be failing

                        any advice?

                        Chantel

                        Chantel
                        Participant

                          Thank you all for your responses, I really appreciate everyones help. 

                          As an update, sorry it took so long, but I have been trying to deal with everything recently.

                          My father was scheduled for surgery and prior to surgery we were notified of disease progression so the surgery was canceled- he was then started on ipilimumab/yervoy and unfortunately had no response- the repeat scans showed significant disease porgression- lymph node, gut, liver, and lung metastasis. He also developed renal toxicity and treatment was stopped.

                          So as you can see, things are not going in a good direction. He clinically is getting much worse, he underwent radiation to his primary tumor site (rectum) due to significant growth in the tumor which was causing pain. He was also started on another treatment (pembrolizumab) and continues to look and feel worse.

                          All of the options and efforts provided to him just seem to be failing

                          any advice?

                          Chantel

                        arthurjedi007
                        Participant

                          Oh rectal as in anal melanoma? A friend has that. He did surgery but not as drastic as what you describe with the bag. Surgery didn't get it all so they did radiation. Scans including a pet then showed he was clear. They gave him some type of pills but 3 months or so later the Mel showed up in his lungs so now he is on yervoy.

                          Artie

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