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Relapsed extragonadal primary mediastinal non-semienoma

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  • So sorry to hear that your journey is coming to an end so soon. I am in awe of the fight you put up. I think a lot of us were really hoping you would be able to pull that rabbit out of the hat the last few weeks. Thanks for wrapping up the story and not leaving us wandering about what might have happened. You are a very brave man indeed.

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    • I'm very saddened to hear this blondie. I've been following your story since last year when I had a relapse. I don't post very often but I just want to say you're a strong person dealing with this. I will be thinking of you and say a prayer. Keep fighting everyday you can!

      -Ted

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      • Hi blondie. I was following your story since last year. You are a inspiration for me and always will be. Stay strong keep fighting ! Prayers for you from the bottom of my heart

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        • Martin, its very painful to hear this news. You are an inspiration to us all and your story has literally reached people around the globe. I have been praying for you for a while now and will continue to pray for peace for you and your family. I hope you are able to keep comfortable and are surrounded with support. Thank you from the bottom of my heart for sharing your story with us since the beginning. God be with you, brother. I hate this disease so much...
          11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

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          • You are very brave and I hope you make it through this. Thinking of you!!

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            • I feel very sad after reading this.. I think I have followed your journey all the way from the very beginning. This is something I hoped never to hear. I feel you have been like a good friend to me here in the forum. I thank you for sharing your story and all your supporting/helpful comments. I am sure there will be many who will benefit from your contributions here in the forum. This is so sad news. I am not going to forget you.
              08-12/2015 Back pain, several epididymitis, fever, night sweats, went to many doctors but nobody thought I had cancer as I had nothing in testicles
              01/2016 Retroperitoneal seminoma stage III, 28cm (tall) mass in retroperitoneum, big masses also in neck
              02-04/2016 3*BEP
              09/2016 Fever again -> relapse, cancer now in lungs too
              09/2016 2*TIP
              10/2016 1*HDC with stem cell transplant -> almost died to severe side effects, one week in ICU, 2nd round skipped
              02/2017 RPLND (21 hours!) - one week in ICU again, found necrosis/fibrosis only
              06/2017 All clear!

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              • Blondie, we've never met but there's a guy in Scotland who is very sad to read your last update.

                You're in my thoughts.

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                • Blonde, I was following your story when I was diagnosed with TC last year. You are a true fighter and a hero to me.
                  6/2016 - Right I/O; 35% Yolk Sac, 35% Teratoma, 10%EC, 20% Seminoma with LVI; AFP elevated; CT scan clean
                  7/2016 - markers normal; confirmed Stage 1B; surveillance
                  8/2016 - markers normal
                  9/2016 - markers normal
                  10/2016 - markers normal; CT scan revealed 3mm lung nodule
                  12/2016 - markers normal
                  2/2017- markers normal; CT scan confirmed lung nodule grew to 14mm; confirmed relapse
                  3/2017 - 3xBEP
                  5/2017 - finished 3xBEP
                  6/2017 - markers normal; no size reduction in lung nodule

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                  • I keep thinking about you. You have fought so hard!!!
                    17 year old Grant dx 12/21/16
                    pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                    pre/o CT Scan 12/22/16 normal
                    r/o 12/22/16
                    Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                    PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                    -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                    2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                    BEP x 3 1/27/17
                    Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                    2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                    Post Chemo RPLND 5/8/17: pathlogy Teratoma , 3 large masses removed

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                    • You are really hero to me. I refuse to believe that this weak disease defeats such a strong person.

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                      • You have been, and will continue to be, an inspiration to many for the way you fought this disease with courage and dignity. May the next stage of your journey bring you peace. You are in my thoughts.

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                        • Just wondering if Martin is still with us, does anyone have any contact with him?

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                          • same here, been thinking of him daily
                            17 year old Grant dx 12/21/16
                            pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                            pre/o CT Scan 12/22/16 normal
                            r/o 12/22/16
                            Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                            PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                            -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                            2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                            BEP x 3 1/27/17
                            Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                            2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                            Post Chemo RPLND 5/8/17: pathlogy Teratoma , 3 large masses removed

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