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To jennunicorn

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  • Post
    • October 26, 2016 at 12:41 pm
    SOLE
    Participant

      When your lymph nodes starded appearing recently, how were they? Small, moderate, big? How so? All swollen I suspect? Firm, movable? Really obvious to palpation? Redness, could you see them clearly to the naked eye? Painful? Did you experience sharp pain that would last a few seconds and stop or else? Did they appear ovenight? A few days, two weeks?

      I am asking all these questions to get a clear sense about how this happens.

      Thank you Jenn. I dont mean to intrude in your personal life, I really want to understand.

      And tell us how you become a complete responder to the combo! If I progress, I hope to be able to try that first and foremost (given that it is available in Canada…)

    Viewing 8 reply threads
    • Replies
        • October 26, 2016 at 1:37 pm
        ed williams
        Participant

          The combination wasn't approved in Ontario unless you were part of a clinical study, not sure about the rest of the country. Pembro (Pd-1) was approved as a monotherapy for stage 4 folks in Ontario. Clinical trials still seem to be the best way to get access to new combinations like Pembro combined with IDO inhibitor.Best Wishes!!!Ed

          • October 26, 2016 at 1:37 pm
          ed williams
          Participant

            The combination wasn't approved in Ontario unless you were part of a clinical study, not sure about the rest of the country. Pembro (Pd-1) was approved as a monotherapy for stage 4 folks in Ontario. Clinical trials still seem to be the best way to get access to new combinations like Pembro combined with IDO inhibitor.Best Wishes!!!Ed

            • October 26, 2016 at 1:37 pm
            ed williams
            Participant

              The combination wasn't approved in Ontario unless you were part of a clinical study, not sure about the rest of the country. Pembro (Pd-1) was approved as a monotherapy for stage 4 folks in Ontario. Clinical trials still seem to be the best way to get access to new combinations like Pembro combined with IDO inhibitor.Best Wishes!!!Ed

                • October 26, 2016 at 2:04 pm
                SOLE
                Participant

                  Ed

                  I think pembro is also available in Qc too. But I dont think we in Canada have acess to the combo without a trial right?

                  As for canadian trials for stage 3b like me, I am new to this but do you see anything of value? You also have to know that I have a condition with my patelets and I currently have a "rare isolated cells" found in one node… Do I go for CLND despite all that?

                  • October 26, 2016 at 2:04 pm
                  SOLE
                  Participant

                    Ed

                    I think pembro is also available in Qc too. But I dont think we in Canada have acess to the combo without a trial right?

                    As for canadian trials for stage 3b like me, I am new to this but do you see anything of value? You also have to know that I have a condition with my patelets and I currently have a "rare isolated cells" found in one node… Do I go for CLND despite all that?

                    • October 26, 2016 at 2:04 pm
                    SOLE
                    Participant

                      Ed

                      I think pembro is also available in Qc too. But I dont think we in Canada have acess to the combo without a trial right?

                      As for canadian trials for stage 3b like me, I am new to this but do you see anything of value? You also have to know that I have a condition with my patelets and I currently have a "rare isolated cells" found in one node… Do I go for CLND despite all that?

                      • October 26, 2016 at 3:21 pm
                      ed williams
                      Participant

                        Hi Sole, I am going to give you a link from ASCO which is one of the best places to get current data and research. If you look at the various trails that are looking at Pd-1 drugs in the adjuvant setting like SWOG 1404 and EORTC 1325 and checkmate 238 it should help you feel better about the options out there. Best Wishes!!!!Ed  http://meetinglibrary.asco.org/content/159087-176

                        • October 26, 2016 at 3:24 pm
                        ed williams
                        Participant

                          The link, takes you to the article I wanted to give you but you have to open the "Full Article " tab to get to the full data and explaination of options that are out there for stage 3 folks. Ed

                          • October 26, 2016 at 3:24 pm
                          ed williams
                          Participant

                            The link, takes you to the article I wanted to give you but you have to open the "Full Article " tab to get to the full data and explaination of options that are out there for stage 3 folks. Ed

                            • October 26, 2016 at 3:24 pm
                            ed williams
                            Participant

                              The link, takes you to the article I wanted to give you but you have to open the "Full Article " tab to get to the full data and explaination of options that are out there for stage 3 folks. Ed

                              • October 26, 2016 at 3:21 pm
                              ed williams
                              Participant

                                Hi Sole, I am going to give you a link from ASCO which is one of the best places to get current data and research. If you look at the various trails that are looking at Pd-1 drugs in the adjuvant setting like SWOG 1404 and EORTC 1325 and checkmate 238 it should help you feel better about the options out there. Best Wishes!!!!Ed  http://meetinglibrary.asco.org/content/159087-176

                                • October 26, 2016 at 3:21 pm
                                ed williams
                                Participant

                                  Hi Sole, I am going to give you a link from ASCO which is one of the best places to get current data and research. If you look at the various trails that are looking at Pd-1 drugs in the adjuvant setting like SWOG 1404 and EORTC 1325 and checkmate 238 it should help you feel better about the options out there. Best Wishes!!!!Ed  http://meetinglibrary.asco.org/content/159087-176

                                  • October 26, 2016 at 4:06 pm
                                  lmccann2016
                                  Participant
                                    What is the different between stage 3a b and c .. thanks
                                    • October 26, 2016 at 4:13 pm
                                    jennunicorn
                                    Participant

                                      Has to do with how many lymph nodes involved and some other factors.

                                      This site is my favorite for easily understanding the stages:

                                      http://www.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-stages

                                      • October 26, 2016 at 4:13 pm
                                      jennunicorn
                                      Participant

                                        Has to do with how many lymph nodes involved and some other factors.

                                        This site is my favorite for easily understanding the stages:

                                        http://www.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-stages

                                        • October 26, 2016 at 4:13 pm
                                        jennunicorn
                                        Participant

                                          Has to do with how many lymph nodes involved and some other factors.

                                          This site is my favorite for easily understanding the stages:

                                          http://www.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-stages

                                          • October 26, 2016 at 4:06 pm
                                          lmccann2016
                                          Participant
                                            What is the different between stage 3a b and c .. thanks
                                            • October 26, 2016 at 4:06 pm
                                            lmccann2016
                                            Participant
                                              What is the different between stage 3a b and c .. thanks
                                            • October 26, 2016 at 3:57 pm
                                            jennunicorn
                                            Participant

                                              Questions are always welcome.

                                              I do not have palpable lymph nodes. The only reason my lymph nodes were biopsied was because of a PET/CT scan I had in September, and comparing with the previous PET/CT scan from June, it showed growth and the SUV uptake (the brightness on the PET scan part) was much higher. Based on that observation, it was decided to biopsy to see if the lymph nodes were just reactive or actually had cancer. 

                                              I have never had palpable lymph nodes from melanoma, so I can't give any advice toward what those feel like.

                                              I truely hope you get some peace soon, I know how hard this is to deal with, and I truely understand how frustrated you must feel being in stage 3, basically the "limbo" stage, and not having any good adjuvant treatment options in your country. But, when I saw my melanoma oncologist for the first time to talk about treatment options, her #1 option was watch and wait. I only did Ipi because at the time I felt that I "had to do something". I wish I hadn't, knowing now that I feel like I wasted almost an entire year on it. Now I know that watch and wait is not doing nothing… with good doctors and frequent scans and eating healthy to naturally boost your immune system, those are all something! There are many stage 3 folks, especially ones that had very little involvement like yourself, that did watch and wait and are still living, never progressed, and never saw melanoma again! It's too bad they don't come here to reassure some of us that there is a light at the end of the tunnel.

                                              Always here to lend an ear or a voice, 

                                              Take care,

                                                • October 26, 2016 at 4:38 pm
                                                SOLE
                                                Participant

                                                  Thank you again Jenn!

                                                  Your input is very much valued.

                                                  Ineed to talk with my onco surgeon.

                                                   

                                                  • October 26, 2016 at 4:38 pm
                                                  SOLE
                                                  Participant

                                                    Thank you again Jenn!

                                                    Your input is very much valued.

                                                    Ineed to talk with my onco surgeon.

                                                     

                                                    • October 26, 2016 at 4:38 pm
                                                    SOLE
                                                    Participant

                                                      Thank you again Jenn!

                                                      Your input is very much valued.

                                                      Ineed to talk with my onco surgeon.

                                                       

                                                    • October 26, 2016 at 3:57 pm
                                                    jennunicorn
                                                    Participant

                                                      Questions are always welcome.

                                                      I do not have palpable lymph nodes. The only reason my lymph nodes were biopsied was because of a PET/CT scan I had in September, and comparing with the previous PET/CT scan from June, it showed growth and the SUV uptake (the brightness on the PET scan part) was much higher. Based on that observation, it was decided to biopsy to see if the lymph nodes were just reactive or actually had cancer. 

                                                      I have never had palpable lymph nodes from melanoma, so I can't give any advice toward what those feel like.

                                                      I truely hope you get some peace soon, I know how hard this is to deal with, and I truely understand how frustrated you must feel being in stage 3, basically the "limbo" stage, and not having any good adjuvant treatment options in your country. But, when I saw my melanoma oncologist for the first time to talk about treatment options, her #1 option was watch and wait. I only did Ipi because at the time I felt that I "had to do something". I wish I hadn't, knowing now that I feel like I wasted almost an entire year on it. Now I know that watch and wait is not doing nothing… with good doctors and frequent scans and eating healthy to naturally boost your immune system, those are all something! There are many stage 3 folks, especially ones that had very little involvement like yourself, that did watch and wait and are still living, never progressed, and never saw melanoma again! It's too bad they don't come here to reassure some of us that there is a light at the end of the tunnel.

                                                      Always here to lend an ear or a voice, 

                                                      Take care,

                                                      • October 26, 2016 at 3:57 pm
                                                      jennunicorn
                                                      Participant

                                                        Questions are always welcome.

                                                        I do not have palpable lymph nodes. The only reason my lymph nodes were biopsied was because of a PET/CT scan I had in September, and comparing with the previous PET/CT scan from June, it showed growth and the SUV uptake (the brightness on the PET scan part) was much higher. Based on that observation, it was decided to biopsy to see if the lymph nodes were just reactive or actually had cancer. 

                                                        I have never had palpable lymph nodes from melanoma, so I can't give any advice toward what those feel like.

                                                        I truely hope you get some peace soon, I know how hard this is to deal with, and I truely understand how frustrated you must feel being in stage 3, basically the "limbo" stage, and not having any good adjuvant treatment options in your country. But, when I saw my melanoma oncologist for the first time to talk about treatment options, her #1 option was watch and wait. I only did Ipi because at the time I felt that I "had to do something". I wish I hadn't, knowing now that I feel like I wasted almost an entire year on it. Now I know that watch and wait is not doing nothing… with good doctors and frequent scans and eating healthy to naturally boost your immune system, those are all something! There are many stage 3 folks, especially ones that had very little involvement like yourself, that did watch and wait and are still living, never progressed, and never saw melanoma again! It's too bad they don't come here to reassure some of us that there is a light at the end of the tunnel.

                                                        Always here to lend an ear or a voice, 

                                                        Take care,

                                                        • October 27, 2016 at 1:38 pm
                                                        David McCaw
                                                        Participant

                                                          Hello Sole, I am also in Canada and getting excellent care in Ottawa, although i feel my Rollercoaster ride is in the flat area presently.  My profile is open , I am in the phonebook and on FB. Currently stage 3c. I had an enlarged lymph node,  9 mm found by ct, ultrasound and confirmed by needle biopsy in summer. It was firm fixed in my left inguinal lymph nodes palpable in groin. I had no other symptoms and was confirmed later during physical exam consult with surgeon oncologist. Follow-up with negative mri and pet scan ruled out anything north, nothing in pelvis.  I had 23 of 28 lymph nodes confirmed after left groin dissection with metastatic carcinoma,  sizes ranging from 0.3 to 3.5 cm  No metastatic in 3 pelvic lymph nodes, one confirmed in left inguinal cloquet node biopsy.  All went well,  I have been hiking,  roller skiing and doing yoga. As per my profile, 4.9 mm tumor,  mitotic rate 8 / sq mm.  Timeline, wle, snb negative on nov. 24, 2015.  april 26, 2016, all clear by dermatologist and found positive results on july 14, 2016

                                                          Good luck with your journey.  The Canadian Cancer Society has a great peer network support and there is also Melanoma Canada Network.

                                                           

                                                          David

                                                          • October 27, 2016 at 1:38 pm
                                                          David McCaw
                                                          Participant

                                                            Hello Sole, I am also in Canada and getting excellent care in Ottawa, although i feel my Rollercoaster ride is in the flat area presently.  My profile is open , I am in the phonebook and on FB. Currently stage 3c. I had an enlarged lymph node,  9 mm found by ct, ultrasound and confirmed by needle biopsy in summer. It was firm fixed in my left inguinal lymph nodes palpable in groin. I had no other symptoms and was confirmed later during physical exam consult with surgeon oncologist. Follow-up with negative mri and pet scan ruled out anything north, nothing in pelvis.  I had 23 of 28 lymph nodes confirmed after left groin dissection with metastatic carcinoma,  sizes ranging from 0.3 to 3.5 cm  No metastatic in 3 pelvic lymph nodes, one confirmed in left inguinal cloquet node biopsy.  All went well,  I have been hiking,  roller skiing and doing yoga. As per my profile, 4.9 mm tumor,  mitotic rate 8 / sq mm.  Timeline, wle, snb negative on nov. 24, 2015.  april 26, 2016, all clear by dermatologist and found positive results on july 14, 2016

                                                            Good luck with your journey.  The Canadian Cancer Society has a great peer network support and there is also Melanoma Canada Network.

                                                             

                                                            David

                                                            • October 27, 2016 at 1:38 pm
                                                            David McCaw
                                                            Participant

                                                              Hello Sole, I am also in Canada and getting excellent care in Ottawa, although i feel my Rollercoaster ride is in the flat area presently.  My profile is open , I am in the phonebook and on FB. Currently stage 3c. I had an enlarged lymph node,  9 mm found by ct, ultrasound and confirmed by needle biopsy in summer. It was firm fixed in my left inguinal lymph nodes palpable in groin. I had no other symptoms and was confirmed later during physical exam consult with surgeon oncologist. Follow-up with negative mri and pet scan ruled out anything north, nothing in pelvis.  I had 23 of 28 lymph nodes confirmed after left groin dissection with metastatic carcinoma,  sizes ranging from 0.3 to 3.5 cm  No metastatic in 3 pelvic lymph nodes, one confirmed in left inguinal cloquet node biopsy.  All went well,  I have been hiking,  roller skiing and doing yoga. As per my profile, 4.9 mm tumor,  mitotic rate 8 / sq mm.  Timeline, wle, snb negative on nov. 24, 2015.  april 26, 2016, all clear by dermatologist and found positive results on july 14, 2016

                                                              Good luck with your journey.  The Canadian Cancer Society has a great peer network support and there is also Melanoma Canada Network.

                                                               

                                                              David

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