Never Wanted to Know The ‘Stage’

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  • Post
    • December 31, 2013 at 9:42 pm
    Jahendry12
    Participant

      Hi – I am fairly new to this site.  My husband was diagnosed with Nodular Melanoma in April 2011.  He had surgery to remove the melanoma from his leg as well as SNB.  The SNB came back with 'traces' of melanoma.  Our melanoma doctor advised a groin dissection and all lymph nodes were removed.  NONE came back with melanoma.  He was doing good, following up with scans, body checks, etc.  March of this year they found a nodule on his lung.  He was sent for a PET and then surgery to remove the nodule.  It came back as melanoma.  He just had another surgery to remove 3 more nodes from his lung as well as some lymph nodes that were enlarged.  Our Christmas present this year, was the pathology coming back as NO MELANOMA. 

      So, my question.  I have never asked what 'stage' my husband is at because I knew it was bad from the beginning, but I just didn't want to live life thinking about a stage.  Since the melanoma has been found on the lung, does that mean he is automatically at stage 4?   I know I should know the Tumor thickness & Mitotic rate, but I do not.  I do know that it was ulcerated & he had had it on his leg for about 8 months.  My guess is that he was Stage  IIIc or 4.  He has blood taken every 3 months and it has always come back near perfect.  He is healthy & has been asymptomatic from day 1. 

      Is there a way to tell what stage he is without knowing the exact thickness?

      Thanks for any information any one can provide.

    Viewing 5 reply threads
    • Replies
        • December 31, 2013 at 9:50 pm
        Janner
        Participant

          Once melanoma has traveled to an organ (lung), a person is stage IV.  The original pathology doesn't matter much.  His original lesion could have been stage I or stage Ii, but he was immediately upstaged to stage III when there were traces of melanoma found in the sentinel node.  And now stage IV with organ mets.  I'm hoping you are working with a melanoma specialist and that he has a treatment plan in place.  

          Best wishes, 

          Janner

            • January 1, 2014 at 3:15 am
            Jahendry12
            Participant

              Thank you for your response.  We have an excellent melanoma specialist and we see him & have CT's every 3 months.  My husband, so far, has only had surgery to remove the melanoma. My husbands case is a little complex since he also has mantle cell lymphoma.  No treatment for the melanoma to date.  Doctor has talked about zelborof, but as of right now, there is I melanoma to treat. I hope it stays that way.  

              • January 1, 2014 at 3:15 am
              Jahendry12
              Participant

                Thank you for your response.  We have an excellent melanoma specialist and we see him & have CT's every 3 months.  My husband, so far, has only had surgery to remove the melanoma. My husbands case is a little complex since he also has mantle cell lymphoma.  No treatment for the melanoma to date.  Doctor has talked about zelborof, but as of right now, there is I melanoma to treat. I hope it stays that way.  

                • January 1, 2014 at 3:15 am
                Jahendry12
                Participant

                  Thank you for your response.  We have an excellent melanoma specialist and we see him & have CT's every 3 months.  My husband, so far, has only had surgery to remove the melanoma. My husbands case is a little complex since he also has mantle cell lymphoma.  No treatment for the melanoma to date.  Doctor has talked about zelborof, but as of right now, there is I melanoma to treat. I hope it stays that way.  

                • December 31, 2013 at 9:50 pm
                Janner
                Participant

                  Once melanoma has traveled to an organ (lung), a person is stage IV.  The original pathology doesn't matter much.  His original lesion could have been stage I or stage Ii, but he was immediately upstaged to stage III when there were traces of melanoma found in the sentinel node.  And now stage IV with organ mets.  I'm hoping you are working with a melanoma specialist and that he has a treatment plan in place.  

                  Best wishes, 

                  Janner

                  • December 31, 2013 at 9:50 pm
                  Janner
                  Participant

                    Once melanoma has traveled to an organ (lung), a person is stage IV.  The original pathology doesn't matter much.  His original lesion could have been stage I or stage Ii, but he was immediately upstaged to stage III when there were traces of melanoma found in the sentinel node.  And now stage IV with organ mets.  I'm hoping you are working with a melanoma specialist and that he has a treatment plan in place.  

                    Best wishes, 

                    Janner

                    • January 2, 2014 at 4:56 am
                    JerryfromFauq
                    Participant

                      Have they ran the DNA mutation test?  Zel is only an option if he has a particular BRF DNA Mutation.   It does nothing as an aacross the board melanoma treatment.

                      • January 2, 2014 at 4:56 am
                      JerryfromFauq
                      Participant

                        Have they ran the DNA mutation test?  Zel is only an option if he has a particular BRF DNA Mutation.   It does nothing as an aacross the board melanoma treatment.

                          • January 2, 2014 at 5:10 am
                          Jahendry12
                          Participant

                            Hi Jerry – yes, my husband tested positive for the BRAF gene.  We have been seeing dr kaufman out of Rush in Chicago, but recently learned he is leaving.  He did not put my husband on zel since the node was removed and no others have surfaced.  Next CT is feb. Keeping my fingers crossed. 

                            • January 2, 2014 at 5:10 am
                            Jahendry12
                            Participant

                              Hi Jerry – yes, my husband tested positive for the BRAF gene.  We have been seeing dr kaufman out of Rush in Chicago, but recently learned he is leaving.  He did not put my husband on zel since the node was removed and no others have surfaced.  Next CT is feb. Keeping my fingers crossed. 

                              • January 2, 2014 at 5:10 am
                              Jahendry12
                              Participant

                                Hi Jerry – yes, my husband tested positive for the BRAF gene.  We have been seeing dr kaufman out of Rush in Chicago, but recently learned he is leaving.  He did not put my husband on zel since the node was removed and no others have surfaced.  Next CT is feb. Keeping my fingers crossed. 

                                • January 2, 2014 at 6:47 am
                                JerryfromFauq
                                Participant

                                  BRAF not BRF                             Hate to have to say, but blod tests for melanoma are aalmost meaningles.  Only when I arm receiving treatment has my blod counts been off.  That is due to the chemicals in the treatments.  There is no blood test that is defintive for melanoma.  The blood tests that are run are to tell if there appears to be a problem with an organ.  This might be due to melanoma, but not necessarily so……. ……………………….. http://labtestsonline.org/understanding/analytes/chloride/SearchForm?Search=comprehensive+Metabolic+panel&action_ProcessSphinxSearchForm=Go

                                  • January 2, 2014 at 6:47 am
                                  JerryfromFauq
                                  Participant

                                    BRAF not BRF                             Hate to have to say, but blod tests for melanoma are aalmost meaningles.  Only when I arm receiving treatment has my blod counts been off.  That is due to the chemicals in the treatments.  There is no blood test that is defintive for melanoma.  The blood tests that are run are to tell if there appears to be a problem with an organ.  This might be due to melanoma, but not necessarily so……. ……………………….. http://labtestsonline.org/understanding/analytes/chloride/SearchForm?Search=comprehensive+Metabolic+panel&action_ProcessSphinxSearchForm=Go

                                    • January 2, 2014 at 7:04 am
                                    JerryfromFauq
                                    Participant
                                      • January 2, 2014 at 7:04 am
                                      JerryfromFauq
                                      Participant
                                        • January 2, 2014 at 4:09 pm
                                        Jahendry12
                                        Participant

                                          Hi Jerry – maybe I misunderstood.  The nodule that was taken out of my husband's was tested for the BRAF mutation and it came back positivie. 

                                          • January 2, 2014 at 4:09 pm
                                          Jahendry12
                                          Participant

                                            Hi Jerry – maybe I misunderstood.  The nodule that was taken out of my husband's was tested for the BRAF mutation and it came back positivie. 

                                            • January 2, 2014 at 4:09 pm
                                            Jahendry12
                                            Participant

                                              Hi Jerry – maybe I misunderstood.  The nodule that was taken out of my husband's was tested for the BRAF mutation and it came back positivie. 

                                              • January 2, 2014 at 8:37 pm
                                              JerryfromFauq
                                              Participant

                                                Good to know what the DNA mutation is, in case of re-occurance, you have possible treatment courses already known.  Wouldn't want to push Zel without any tumors at present.  Will be interesting to see if some day they conduct the trials to learn if the Stage IV meds can be used as adjuvant treatments to prevent spread of lower stage melanoma's.  I have been saying this for years, and last night read where a couple of the biig name Onc's are saying this seems to be a feasible possibility to study.

                                                • January 2, 2014 at 8:37 pm
                                                JerryfromFauq
                                                Participant

                                                  Good to know what the DNA mutation is, in case of re-occurance, you have possible treatment courses already known.  Wouldn't want to push Zel without any tumors at present.  Will be interesting to see if some day they conduct the trials to learn if the Stage IV meds can be used as adjuvant treatments to prevent spread of lower stage melanoma's.  I have been saying this for years, and last night read where a couple of the biig name Onc's are saying this seems to be a feasible possibility to study.

                                                  • January 2, 2014 at 8:37 pm
                                                  JerryfromFauq
                                                  Participant

                                                    Good to know what the DNA mutation is, in case of re-occurance, you have possible treatment courses already known.  Wouldn't want to push Zel without any tumors at present.  Will be interesting to see if some day they conduct the trials to learn if the Stage IV meds can be used as adjuvant treatments to prevent spread of lower stage melanoma's.  I have been saying this for years, and last night read where a couple of the biig name Onc's are saying this seems to be a feasible possibility to study.

                                                    • January 2, 2014 at 9:59 pm
                                                    JC
                                                    Participant

                                                      so they would consider adjuvant therapy for Stage I to prevent spread?

                                                      • January 2, 2014 at 9:59 pm
                                                      JC
                                                      Participant

                                                        so they would consider adjuvant therapy for Stage I to prevent spread?

                                                        • January 2, 2014 at 9:59 pm
                                                        JC
                                                        Participant

                                                          so they would consider adjuvant therapy for Stage I to prevent spread?

                                                          • January 2, 2014 at 10:33 pm
                                                          Janner
                                                          Participant

                                                            Unlikely, as the drugs are expensive, have major side effects, and are really not appropriate when most stage I will not need them.  More likely it would be for stage III/IV NED like Interferon is used now.

                                                            • January 2, 2014 at 10:33 pm
                                                            Janner
                                                            Participant

                                                              Unlikely, as the drugs are expensive, have major side effects, and are really not appropriate when most stage I will not need them.  More likely it would be for stage III/IV NED like Interferon is used now.

                                                              • January 2, 2014 at 10:33 pm
                                                              Janner
                                                              Participant

                                                                Unlikely, as the drugs are expensive, have major side effects, and are really not appropriate when most stage I will not need them.  More likely it would be for stage III/IV NED like Interferon is used now.

                                                                • January 2, 2014 at 7:04 am
                                                                JerryfromFauq
                                                                Participant
                                                                  • January 2, 2014 at 6:47 am
                                                                  JerryfromFauq
                                                                  Participant

                                                                    BRAF not BRF                             Hate to have to say, but blod tests for melanoma are aalmost meaningles.  Only when I arm receiving treatment has my blod counts been off.  That is due to the chemicals in the treatments.  There is no blood test that is defintive for melanoma.  The blood tests that are run are to tell if there appears to be a problem with an organ.  This might be due to melanoma, but not necessarily so……. ……………………….. http://labtestsonline.org/understanding/analytes/chloride/SearchForm?Search=comprehensive+Metabolic+panel&action_ProcessSphinxSearchForm=Go

                                                                  • January 2, 2014 at 4:56 am
                                                                  JerryfromFauq
                                                                  Participant

                                                                    Have they ran the DNA mutation test?  Zel is only an option if he has a particular BRF DNA Mutation.   It does nothing as an aacross the board melanoma treatment.

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