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Mucosal Melanoma spread to Bones

Forums Mucosal Melanoma Community Mucosal Melanoma spread to Bones

  • Post
    MariaBailey
    Participant

      My Mom was diagnosed in October 2014 with Mucosal Melanoma of the Nasal Cavity. She had surgery to remove the small tumor, half her pallate, part of her cheek bone, half her jaw and her lymph nodes from her neck. Then had radiation 35 treatments. The doctor told her that he believes he got all of it but this is a very sneaky cancer. Well in December her side hurt and she had a x-ray. They found a mass on her bone. With a byopsy they found the mucosal melanoma spread. She does not have any of the protein variations so they have her on Yervoy. Has anyone had this and if so what other treatments are there? I have been doing research but it seems all the treatments that are working very well deal with the variation of the proteins (BRAF, NRAS, and Kit). This is making me nervous and I am trying to find out other treatments to help my mom live a long full life. Thank you

    Viewing 6 reply threads
    • Replies
        Sha20vs
        Participant

          Hello-

          is your mother being seen by a Melanoma specialist? This is very important. Has she had other scans done? 

            MariaBailey
            Participant

              I am not sure! She has had a slew of scans done. PET being the important one. They found spots in other places too. Her oncologist has delt with this type of melanoma a couple of times. I cant seem to find any melanoma specialist in Rochester NY.

              MariaBailey
              Participant

                I am not sure! She has had a slew of scans done. PET being the important one. They found spots in other places too. Her oncologist has delt with this type of melanoma a couple of times. I cant seem to find any melanoma specialist in Rochester NY.

                MariaBailey
                Participant

                  I am not sure! She has had a slew of scans done. PET being the important one. They found spots in other places too. Her oncologist has delt with this type of melanoma a couple of times. I cant seem to find any melanoma specialist in Rochester NY.

                Sha20vs
                Participant

                  Hello-

                  is your mother being seen by a Melanoma specialist? This is very important. Has she had other scans done? 

                  Sha20vs
                  Participant

                    Hello-

                    is your mother being seen by a Melanoma specialist? This is very important. Has she had other scans done? 

                    arthurjedi007
                    Participant

                      Wow. It sounds like she has already been through a lot. At stage 4 I seem to remember reading they treat mucosal the same as the rest of the melanomas. Not sure if there is specific treatment. Might be a good trial out there though. I think Jerry might know a lot about mucosal.

                      Yervoy is great for her to be on. Hopefully she does well with all 4 doses. Hopefully she is a responder. That being said I would not wait very long after the last yervoy dose to get on one of the pd1s. 2 weeks after the fourth dose they did the scan for me and said I was not a responder so on to next treatment. It is unusual to give up on yervoy that quickly but he's an experienced melanoma doc and even I could see in the scan it didn't work. Pd1 however right before the fourth dose the scan showed stuff shrinking. Without having braf mutation she should be able to get on pd1 right after yervoy if she tolerates it well and I would be talking to the doc about it so all the insurance and stuff is set so no delays happen.

                      Also I'm suprised they said it was on her bone instead of in her bone. I have over 30 tumors and all are in the bone then grow out so they can see it on the surface of the bone then it grows into the soft tissue. I guess it doesn't make a difference in treatment though just seemed odd to me.

                      Since it hasn't got to her spine or serious bones she might not want to start bone strengthingers like xgeva or zommeta because they might affect the yervoy or pd1 but there is no data on that. I take xgeva and pd1 because I have to with my spine.

                      Artie

                        mary1233
                        Participant

                          I agree with Artie – I believe the FDA approved the Anti PD-1 drugs after failing Yervoy for people with the BRAF mutation, which is not your mother.

                          I hope your mother is at a major research center where they have specialists who can try anything and also deal with the other issues that come up – such as what are they going to do to reinforce her bones.

                          My best wishes.

                          Mary

                          mary1233
                          Participant

                            I agree with Artie – I believe the FDA approved the Anti PD-1 drugs after failing Yervoy for people with the BRAF mutation, which is not your mother.

                            I hope your mother is at a major research center where they have specialists who can try anything and also deal with the other issues that come up – such as what are they going to do to reinforce her bones.

                            My best wishes.

                            Mary

                            mary1233
                            Participant

                              I agree with Artie – I believe the FDA approved the Anti PD-1 drugs after failing Yervoy for people with the BRAF mutation, which is not your mother.

                              I hope your mother is at a major research center where they have specialists who can try anything and also deal with the other issues that come up – such as what are they going to do to reinforce her bones.

                              My best wishes.

                              Mary

                              MariaBailey
                              Participant

                                I am hoping the Yervoy works. I am going to her appointment on Tuesday to get a better understanding of this. It may be in her bones not on. I am working with my dads account of the doctors appointments. How long have you had this diagnosis?

                                Doesnt the PD1's work with the diagnosis of the protien KIT, NRAS, or BRAF? She doesnt have this. They tested her for it.

                                So even with out the Braf she could do it? I am going to discuss this with her doc.

                                They found one on her 5th vertibra and started her on the bone strengthiners. 

                                Thank you so much this helped alot!!!!

                                 

                                arthurjedi007
                                Participant

                                  I'm a little over 21 months since my diagnosis.

                                  PD1 and Yervoy are immunotherapies so they work whether the patient has those mutations or not. Yervoy works if the tumors are succeptable to the ctla4 pathway. Pd1 works on the pd1 pathway. Doc's really don't know yet until they try if the med will work on a particular patient although they are looking at ways to predict it.

                                  Artie

                                  arthurjedi007
                                  Participant

                                    I'm a little over 21 months since my diagnosis.

                                    PD1 and Yervoy are immunotherapies so they work whether the patient has those mutations or not. Yervoy works if the tumors are succeptable to the ctla4 pathway. Pd1 works on the pd1 pathway. Doc's really don't know yet until they try if the med will work on a particular patient although they are looking at ways to predict it.

                                    Artie

                                    arthurjedi007
                                    Participant

                                      I'm a little over 21 months since my diagnosis.

                                      PD1 and Yervoy are immunotherapies so they work whether the patient has those mutations or not. Yervoy works if the tumors are succeptable to the ctla4 pathway. Pd1 works on the pd1 pathway. Doc's really don't know yet until they try if the med will work on a particular patient although they are looking at ways to predict it.

                                      Artie

                                      MariaBailey
                                      Participant

                                        I am hoping the Yervoy works. I am going to her appointment on Tuesday to get a better understanding of this. It may be in her bones not on. I am working with my dads account of the doctors appointments. How long have you had this diagnosis?

                                        Doesnt the PD1's work with the diagnosis of the protien KIT, NRAS, or BRAF? She doesnt have this. They tested her for it.

                                        So even with out the Braf she could do it? I am going to discuss this with her doc.

                                        They found one on her 5th vertibra and started her on the bone strengthiners. 

                                        Thank you so much this helped alot!!!!

                                         

                                        MariaBailey
                                        Participant

                                          I am hoping the Yervoy works. I am going to her appointment on Tuesday to get a better understanding of this. It may be in her bones not on. I am working with my dads account of the doctors appointments. How long have you had this diagnosis?

                                          Doesnt the PD1's work with the diagnosis of the protien KIT, NRAS, or BRAF? She doesnt have this. They tested her for it.

                                          So even with out the Braf she could do it? I am going to discuss this with her doc.

                                          They found one on her 5th vertibra and started her on the bone strengthiners. 

                                          Thank you so much this helped alot!!!!

                                           

                                        arthurjedi007
                                        Participant

                                          Wow. It sounds like she has already been through a lot. At stage 4 I seem to remember reading they treat mucosal the same as the rest of the melanomas. Not sure if there is specific treatment. Might be a good trial out there though. I think Jerry might know a lot about mucosal.

                                          Yervoy is great for her to be on. Hopefully she does well with all 4 doses. Hopefully she is a responder. That being said I would not wait very long after the last yervoy dose to get on one of the pd1s. 2 weeks after the fourth dose they did the scan for me and said I was not a responder so on to next treatment. It is unusual to give up on yervoy that quickly but he's an experienced melanoma doc and even I could see in the scan it didn't work. Pd1 however right before the fourth dose the scan showed stuff shrinking. Without having braf mutation she should be able to get on pd1 right after yervoy if she tolerates it well and I would be talking to the doc about it so all the insurance and stuff is set so no delays happen.

                                          Also I'm suprised they said it was on her bone instead of in her bone. I have over 30 tumors and all are in the bone then grow out so they can see it on the surface of the bone then it grows into the soft tissue. I guess it doesn't make a difference in treatment though just seemed odd to me.

                                          Since it hasn't got to her spine or serious bones she might not want to start bone strengthingers like xgeva or zommeta because they might affect the yervoy or pd1 but there is no data on that. I take xgeva and pd1 because I have to with my spine.

                                          Artie

                                          arthurjedi007
                                          Participant

                                            Wow. It sounds like she has already been through a lot. At stage 4 I seem to remember reading they treat mucosal the same as the rest of the melanomas. Not sure if there is specific treatment. Might be a good trial out there though. I think Jerry might know a lot about mucosal.

                                            Yervoy is great for her to be on. Hopefully she does well with all 4 doses. Hopefully she is a responder. That being said I would not wait very long after the last yervoy dose to get on one of the pd1s. 2 weeks after the fourth dose they did the scan for me and said I was not a responder so on to next treatment. It is unusual to give up on yervoy that quickly but he's an experienced melanoma doc and even I could see in the scan it didn't work. Pd1 however right before the fourth dose the scan showed stuff shrinking. Without having braf mutation she should be able to get on pd1 right after yervoy if she tolerates it well and I would be talking to the doc about it so all the insurance and stuff is set so no delays happen.

                                            Also I'm suprised they said it was on her bone instead of in her bone. I have over 30 tumors and all are in the bone then grow out so they can see it on the surface of the bone then it grows into the soft tissue. I guess it doesn't make a difference in treatment though just seemed odd to me.

                                            Since it hasn't got to her spine or serious bones she might not want to start bone strengthingers like xgeva or zommeta because they might affect the yervoy or pd1 but there is no data on that. I take xgeva and pd1 because I have to with my spine.

                                            Artie

                                            Sailor
                                            Participant

                                              Dear Maria, I have MM Stage IV, and went through similar track of surgery, radiation and will start on Opdivo tomorrow due to metastasis in the bones. Your initial message was 2 years ago and I wonder what happened?

                                              cor

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