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Advice/Help on next steps for my mom

Forums General Melanoma Community Advice/Help on next steps for my mom

  • Post
    Selle7
    Participant

      Hi everybody,

      My Mom was diagnosed 3b in November 2015. Primary was 1.8, ulcerated, SSM on her right shoulder/chest. After one sentinel node came back positive for a 1mm micromet, she elected to have a lymph node dissection. No more cancer was found. 

      Two weeks ago a small black lesion appeared about 1cm away from the lower part of her wide excision scar. The lesion was about 2-3mm. We received biopsy results today that it is melanoma. Her dermatologist explained that it had likely travelled through the skin and that she would be referred to cancer clinic for next steps. 

      I know there are many knowledgable people on this board, probably more so than my mom's Derm. Could anybody offer any insight into what we are looking at next? The waiting game kills me. 

      Thank you in advance. 

       

       

       

    Viewing 5 reply threads
    • Replies
        Mark_DC
        Participant

          Hi Selle7 sorry for the bad news. I think there are people here much more expert than me, but here is what i think should happen next based on personal experience (and others more expert have not replied yet so should try to help

          Make sure to consult a melanoma specialist at the cancer center

          Good news that the recurrence seems small – well caught

          But i think they may recommend a new set of scans to confirm staging. Lets hope these are good.

          if you have good news then i think her staging stays 3b

          you are probably looking at another excision or removal, but you might want to consider immunotherapy instead if allowed (not sure about this at this stage – thats why you need to see a melanoma specialist who can consider all the options with you

          good luck, there is much help on this board, and others much more knowledgeable though can be a little overwhelming

          Mark

          Mark_DC
          Participant

            Hi Selle7 sorry for the bad news. I think there are people here much more expert than me, but here is what i think should happen next based on personal experience (and others more expert have not replied yet so should try to help

            Make sure to consult a melanoma specialist at the cancer center

            Good news that the recurrence seems small – well caught

            But i think they may recommend a new set of scans to confirm staging. Lets hope these are good.

            if you have good news then i think her staging stays 3b

            you are probably looking at another excision or removal, but you might want to consider immunotherapy instead if allowed (not sure about this at this stage – thats why you need to see a melanoma specialist who can consider all the options with you

            good luck, there is much help on this board, and others much more knowledgeable though can be a little overwhelming

            Mark

            Mark_DC
            Participant

              Hi Selle7 sorry for the bad news. I think there are people here much more expert than me, but here is what i think should happen next based on personal experience (and others more expert have not replied yet so should try to help

              Make sure to consult a melanoma specialist at the cancer center

              Good news that the recurrence seems small – well caught

              But i think they may recommend a new set of scans to confirm staging. Lets hope these are good.

              if you have good news then i think her staging stays 3b

              you are probably looking at another excision or removal, but you might want to consider immunotherapy instead if allowed (not sure about this at this stage – thats why you need to see a melanoma specialist who can consider all the options with you

              good luck, there is much help on this board, and others much more knowledgeable though can be a little overwhelming

              Mark

                Selle7
                Participant

                  Thank you so much for replying. I am in Canada so I'm not sure if we get a pick of specialists, but will look into it. 

                  I have read articles where the prognosis after local recurrence ranges from 7-55%. That lower number is very overwhelming. 

                  Would desperately love to hear from anyone out there in a similar situation. 

                  Mark_DC
                  Participant

                    Dear Selle7, I too am a numbers person but they are very confusing and depressing, and conflate a lot of cases at different stages and also ignore the new treeatments. So best not to get too bogged down on those but i think your numbers are on the pessimistic side and you simply dont know enough yet about your mum's case. Also even   If the numbers seem bad we have to hope and also try to get on with life and make best of it be grateful help others.

                    there are many canadian patients on this board, so you can search for their cases, you can find melanoma specialists in canada and this is the best advice in this board and i follow it,  then i think your mum will need to do scans etc as i described earlier to check whats going on. If its limited then she could be in a good place.

                    also why not check out celestes blog (she posts as bubbles) – it has lots of info and the right attitude too

                    good luck mark

                    Mark_DC
                    Participant

                      Dear Selle7, I too am a numbers person but they are very confusing and depressing, and conflate a lot of cases at different stages and also ignore the new treeatments. So best not to get too bogged down on those but i think your numbers are on the pessimistic side and you simply dont know enough yet about your mum's case. Also even   If the numbers seem bad we have to hope and also try to get on with life and make best of it be grateful help others.

                      there are many canadian patients on this board, so you can search for their cases, you can find melanoma specialists in canada and this is the best advice in this board and i follow it,  then i think your mum will need to do scans etc as i described earlier to check whats going on. If its limited then she could be in a good place.

                      also why not check out celestes blog (she posts as bubbles) – it has lots of info and the right attitude too

                      good luck mark

                      Mark_DC
                      Participant

                        Dear Selle7, I too am a numbers person but they are very confusing and depressing, and conflate a lot of cases at different stages and also ignore the new treeatments. So best not to get too bogged down on those but i think your numbers are on the pessimistic side and you simply dont know enough yet about your mum's case. Also even   If the numbers seem bad we have to hope and also try to get on with life and make best of it be grateful help others.

                        there are many canadian patients on this board, so you can search for their cases, you can find melanoma specialists in canada and this is the best advice in this board and i follow it,  then i think your mum will need to do scans etc as i described earlier to check whats going on. If its limited then she could be in a good place.

                        also why not check out celestes blog (she posts as bubbles) – it has lots of info and the right attitude too

                        good luck mark

                        Selle7
                        Participant

                          Thank you so much for replying. I am in Canada so I'm not sure if we get a pick of specialists, but will look into it. 

                          I have read articles where the prognosis after local recurrence ranges from 7-55%. That lower number is very overwhelming. 

                          Would desperately love to hear from anyone out there in a similar situation. 

                          Selle7
                          Participant

                            Thank you so much for replying. I am in Canada so I'm not sure if we get a pick of specialists, but will look into it. 

                            I have read articles where the prognosis after local recurrence ranges from 7-55%. That lower number is very overwhelming. 

                            Would desperately love to hear from anyone out there in a similar situation. 

                          Jules
                          Participant

                            Hi Selle,

                            i am so very sorry to hear about your mother, my father is currently stage 3C- finished 6 weeks of radiation and currently on keytruda. i agree with what mark said above, the most important thing to do first is find a melanoma specialist, I understand you're in Canada but if you have to fight do it because that will make a huge difference in her care and treatment plan. My mom works at large cancer institute and will get patients from Canada who need care quickly from a specialist, not easy by any means but worth it.

                            Your mom will need a full pet scan and mri of the brain for proper staging. Did she have a full neck dissection? If not they'll probably discuss that to ensure it hasn't spread to the entire lymph node basin. If her scans are clear and it's localized at stage 3 options are yervoy, comanly referred to as ipi and the other choice is interferon. Yervoy has a response rate of 12% but when it works it works well, just doesn't work for the majority of people – interferon is rough with low response rates as well. 

                            Do you know her BRAF status? There are some clinical trials going on for stage 3 since options are limited compared to stage 4. 

                            Sorry for the info overload, hopefully it helps. I wish your mother (and you) well. I know how hard it is to watch your loved one go through this, I've spent 13 years keeping up to date with melanoma because of my dad, now working in the Oncology field and trying desperately to get him from stage 3 to NED instead of stage 4. 

                            All the best,

                            J

                            Jules
                            Participant

                              Hi Selle,

                              i am so very sorry to hear about your mother, my father is currently stage 3C- finished 6 weeks of radiation and currently on keytruda. i agree with what mark said above, the most important thing to do first is find a melanoma specialist, I understand you're in Canada but if you have to fight do it because that will make a huge difference in her care and treatment plan. My mom works at large cancer institute and will get patients from Canada who need care quickly from a specialist, not easy by any means but worth it.

                              Your mom will need a full pet scan and mri of the brain for proper staging. Did she have a full neck dissection? If not they'll probably discuss that to ensure it hasn't spread to the entire lymph node basin. If her scans are clear and it's localized at stage 3 options are yervoy, comanly referred to as ipi and the other choice is interferon. Yervoy has a response rate of 12% but when it works it works well, just doesn't work for the majority of people – interferon is rough with low response rates as well. 

                              Do you know her BRAF status? There are some clinical trials going on for stage 3 since options are limited compared to stage 4. 

                              Sorry for the info overload, hopefully it helps. I wish your mother (and you) well. I know how hard it is to watch your loved one go through this, I've spent 13 years keeping up to date with melanoma because of my dad, now working in the Oncology field and trying desperately to get him from stage 3 to NED instead of stage 4. 

                              All the best,

                              J

                              Jules
                              Participant

                                Hi Selle,

                                i am so very sorry to hear about your mother, my father is currently stage 3C- finished 6 weeks of radiation and currently on keytruda. i agree with what mark said above, the most important thing to do first is find a melanoma specialist, I understand you're in Canada but if you have to fight do it because that will make a huge difference in her care and treatment plan. My mom works at large cancer institute and will get patients from Canada who need care quickly from a specialist, not easy by any means but worth it.

                                Your mom will need a full pet scan and mri of the brain for proper staging. Did she have a full neck dissection? If not they'll probably discuss that to ensure it hasn't spread to the entire lymph node basin. If her scans are clear and it's localized at stage 3 options are yervoy, comanly referred to as ipi and the other choice is interferon. Yervoy has a response rate of 12% but when it works it works well, just doesn't work for the majority of people – interferon is rough with low response rates as well. 

                                Do you know her BRAF status? There are some clinical trials going on for stage 3 since options are limited compared to stage 4. 

                                Sorry for the info overload, hopefully it helps. I wish your mother (and you) well. I know how hard it is to watch your loved one go through this, I've spent 13 years keeping up to date with melanoma because of my dad, now working in the Oncology field and trying desperately to get him from stage 3 to NED instead of stage 4. 

                                All the best,

                                J

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