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  • #16
    Here in France at Gustave Roussy, they have a new protocol for poor prognosis called GETUG13 but it looks like it's only for TGNS...
    https://www.thelancet.com/journals/l...490-5/fulltext
    https://www.sciencedirect.com/scienc...59804917313321
    https://www.mdedge.com/internalmedic...dard-poor-risk
    I don't know if it can help...
    Gustave Roussy is a center of excellence in TC

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    • #17
      Hi Dook, thank you very much for the links, and for telling me the name of the center of excellence there in France, it's good to know and I'm looking now for more information.

      Although the histology showed that the tumour was seminoma, it's considered that it's a nonseminoma due to the high level of bHCG (probably choriocarcinoma).

      Today we'll repeat the blood test.

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      • #18
        The professor at Gustave Roussy :
        https://www.gustaveroussy.fr/fr/karim-fizazi

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        • #19
          Hello all, I just wanted to bring GOOD news.

          All the doctors agreed: he needs more chemo. He started Gemcitabine + Taxol on 24th July. The tumour marker started to drop inmediately, all his doctors (Seville, Barcelona and Einhorn) are very happy.

          He doesn't feel bad at all with this chemo (just very tired 24-48 hours after the chemo), only 1 day at week, with ZERO nausea (I even can't believe this) so all this month he's been with (almost) normal life and enjoying it, eating all the food he wants, not losing weight and feeling like normal.

          We already know that the only new nodule was the lung one (they are very happy because of this too), so the doctors want him to receive at least 3-4 courses of Gem+Tax and then check, if the nodule is still there, do the surgery (they say it's placed on the external side, so it will be an "easy" surgery).

          His bhCG is 63 now (normal range 0-10), with the last shot of chemo given yesterday (1 course complete), so we think this is a very good sign.

          Any similar experiences or support comments are welcome.

          Thanks for being there.

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          • #20
            So sorry to hear about this, but happy to hear he's getting a response from the gemcitabine + taxol combo, and that there's a plan in place with Dr Einhorn involved.
            Young Adult Cancer Survivorship by Steve Pake
            April is Testicular Cancer Awareness Month!
            www.stevepake.com
            Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
            My Survivorship Thread | All of my Blogs
            C
            ONTACT ME ANYTIME!

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            • #21
              Hi.

              It's great to hear that the signs are looking encouraging.
              Nick

              Embryonal Carcinoma; Seminoma. Marker negative.
              August 2001: Right I/O .
              August - December 2001: Surveillance .
              December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
              December 2001 - March 2002: 3xBEP .
              Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.

              March 2012 - Ten years since finishing chemo.

              Survivorship Blog is here

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              • #22
                Thanks to all!!

                Yesterday we started the 2nd cyce, all is going fine. I'll keep posting.

                Best wishes to all!

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                • #23
                  Hello Hermana,

                  I am in a similar situation. I relapsed shortly after HDCT. I had a mediastinal mass. My cancer spread to a lymph node in my chest and a tumor in my liver . The doctors are investigating a clinical trial for me. My doctor told me he will put me on GEMOX if finding a trial takes too long/no response. Currently, I'm doing gene profiling in my home state. I already did the gene profiling at MSKCC. He took consultation from Einhorn who said that doing the profiling was the right step, and GEMOX if that doesn't work. Its encouraging to hear that GEMOX is working for your loved one. Unfortunately, there have not been many breakthroughs in germ cell tumors lately. However, I am confident that advances in gene editing can find the cure, and for our sake, sooner rather than later!! Best regards to you,

                  Alam

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                  • #24
                    Hi Alam, I'm so sorry to know that you are suffering so much in these moments, as we are, just wanted to say to you: THANK YOU for posting that, for me, it took my most bravery to post here, I think you are very brave.

                    Be strong and never lost faith, I was thinking about that today just before log in here, keep fighting, always. I can't understand life in other way.

                    Today we received the results of the IMPACT program (MSKCC), they're going to send it to his doctors.

                    My brother is doing very well, yesterday his marker (bhCG) was less than 17 (0-10 normal range), so we are almost there, but he is doing GEMCITABINE + TAXOL (or Placlitaxel). Are you doing GEMOX? I think that is Gemcitabine + Oxiplatine, is a different chemo.

                    If Dr Einhorn recommended you to do GEMOX I would do it with "blind eyes". Trust and my very best wishes to you. I'm available to talk whenever you want.

                    Best regards Alam,

                    Magda

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                    • #25
                      Normal tumour marker!!!!!

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                      • #26
                        That is awesome to hear Hermana!!! Great to see that you all did the MSKCC Make An Impact. Did they have any favorable results? Who did you all see in Barcelona? I should actually be there at the end of this moth for the European Society of Clinical Oncology meeting.

                        Mike
                        Oct. 2005 felt lump but waited over 7 months.
                        06.15.06 "You have Cancer"
                        06.26.06 Left I/O
                        06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                        06.30.06 It's Official - Stage I Seminoma
                        Surveillance...
                        Founded the Testicular Cancer Society
                        6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                        For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

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                        • #27
                          This is so encouraging! Happy to hear! Happy for you!

                          BRs

                          Amy, Ran’s mom
                          Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal

                          08/23/2019 Bloodwork, Abdomen CT and Chest X-ray all normal

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                          • #28
                            Thanks to both! Thank you very much!

                            Mike: we are seeing Dr Garc*a del Muro, at IOB Barcelona.

                            The "Make an Impact" test results shows a "kit" mutation, so they recommend a targeted therapy with imatinib (a kinase inhibitor), just in case we need it in the future, as he is doing so well with Gem+Tax. It's always good to know, and the sooner the better.

                            Thanks again both for your words.

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                            • #29
                              What a great news!!! I am very happy of reading that Magda
                              Keep strong for all fighters here!!
                              22/10/2015: Diagnosis: pure Seminoma hcg 13268/ 20x25 mm mass in my left testicle
                              23/10/2015: Left orchiectomy
                              28/10/2015: TC torax/abdomen/pelvis 3 focal liver lesions (0,7cm, 0,7cm and 1,0cm)
                              18/11/2015: started 4xBEP treatment
                              31/01/2016: finished 4xBEP treatment

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                              • #30
                                Thank you VERY much Nito for all your support!

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