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Recurrent germ cell cancer, all lines of treatment failed (18 month journey)

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  • Recurrent germ cell cancer, all lines of treatment failed (18 month journey)

    Hey everyone, I'll try to keep this short and simple but I'm looking if anyone has any advice to offer on my current fight with recurrent primary mediastinal germ cell cancer.

    * Non-seminoma, yolk sac tumor
    * AFP elevated
    * Metastasis around the heart, lungs, liver
    * VIP: no success, HDCT: no success, Gene Therapy: no success
    * Genetic mutations: KIT, TP53, CHEK1, KDM5A, CCND2, RAD52, MAPK3, ETV6


    My journey began in June 2018, I underwent 4x VIP followed by a surgical resection in my chest. I had a complete response but shortly after, the disease persisted and I received 3x HDCT + stem cell transplant. This also worked for a short period of time and the cancer returned and metastasized to my lungs and liver. After a short delay, I began a clinical trial in gene therapy for a drug named Sunitinib. I was on this drug for 1 cycle and it brought down by tumour markers, but halfway through cycle 2 my tumour markers were rising again, and the disease had progressed even further radiographically. Due to the pressure on my superior vena cava, I am receiving radiation (5 days), and will begin GEMOX next week.

    As far as I know, GEMOX is the last viable attempt at controlling the disease. I have inquired about a drug named Ripretinib which is also a c-Kit inhibitor, but seeing how ineffective the Sunitinib was, I'm not very interested in attempting this drug in a clinical trial setting anymore.

    Is there anything else I should be looking at? If anyone has experience at fighting this disease at this advance stage, please share some guidance. Even if it's about the practicality of managing my day-to-day and alleviating some the symptoms of the upcoming chemotherapy. Any suggestions are welcome. If there is any further information I could also provide please let me know.

    Thank you very much for your time.

    Alam

  • #2
    So sorry to hear about your struggles. You have a very advanced case that there are probably only a few of us here that have any experience at all with. Can I ask where you are currently being treated?
    6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
    6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
    7/7/15: bHCG 56, AFP 42, LDH 322
    7/13/15: begin 4xEP, end 9/18/15
    10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
    10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
    4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
    4/20/16: RPLND @ IU - teratoma only!
    10/22/19: all clears up to this date!

    Comment


    • #3
      I am also very sorry for your situation,Alan.

      I never heard of so aggressive TC before. I think one patient’s sister called Melani (not sure) maybe had similar case.

      I hope someone or some knowledge people can provide more valuable information. Where are you now? I guess you already reached Dr.E. Do they review your histology? In my mind, yolk sac tumor is sensitive to chemo, why in your case it behaved more aggressive ?

      I am praying for you.

      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 Teratoma .Back to surveillance 05/02/19 Blood work all normal

      08/23/2019 normal
      12/04/2019 normal.
      04/01/2020 normal.

      Comment


      • #4
        I am also very sorry for your situation,Alan.

        I never heard of so aggressive TC before. I think one patient’s sister called Melani (not sure) maybe had similar case.

        I hope someone or some knowledge people can provide more valuable information. Where are you now? I guess you already reached Dr.E. Do they review your histology? In my mind, yolk sac tumor is sensitive to chemo, why in your case it behaved more aggressive ?

        I am praying for you.

        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 Teratoma .Back to surveillance 05/02/19 Blood work all normal

        08/23/2019 normal
        12/04/2019 normal.
        04/01/2020 normal.

        Comment


        • #5
          Alan, I'm praying for you, too.

          Comment


          • #6
            My prayers are with you too, sorry I cant give any usefull advice or comfort.
            45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
            Waiting...

            Comment


            • #7
              Hello all,

              Thank you for your responses. I am currently being treated in Ottawa, Canada. I have reached out to Dr. E before, and I will do so again soon. Starting Gemox on Monday. Wish me luck!

              Comment


              • #8
                Good luck buddy! Please let us know how things go for you!
                Painless lump 5/18/2017
                Orchidectomy June 2017 (4.5cm, rete testis involvement)
                Chemo Summer 2017 (2x7AUC carboplatin)
                No evidence of relapse since, but plenty of anxiety about it.

                I'm also an epidemiologist, and a professor at a medical school (with NO training in oncology), oh, and gay, too.

                Comment


                • #9
                  Best of luck, alam, hope this one works for you!!
                  July 2016 - Left I/O
                  December 2016 - BEPx3
                  3 years all clear + baby after TC!

                  Take Your Life Back After Cancer 7 Day Challenge - Sign Up Free
                  ---
                  Personal advice on the everyday reality of TC - Testicular Cancer Support Kit
                  ---
                  My book on overcoming key challenges us guys face during cancer - Find Out More
                  ---
                  Listen to expert opinions and survivor insights - Listen to Simplify Cancer Podcast

                  Comment


                  • #10
                    Good luck Alam
                    Prayers

                    Comment


                    • #11
                      Best of luck, we are pulling for you!!
                      6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                      6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                      7/7/15: bHCG 56, AFP 42, LDH 322
                      7/13/15: begin 4xEP, end 9/18/15
                      10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                      10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                      4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                      4/20/16: RPLND @ IU - teratoma only!
                      10/22/19: all clears up to this date!

                      Comment


                      • #12
                        So sorry to hear about your most difficult situation Alam. Have you heard back from Dr. Einhorn at all?

                        I'm not sure who you are seeing in Canada but of you are looking or ned to get any TC experts on your side for assistance, etc. then I would reach out to Dr. Hamilton on the Princess Margaret team https://www.uhn.ca/PrincessMargaret/.../our_team.aspx Although he is not a medical oncologist, he is highly knowledgeable and well connected. You can also reach out to Dr. Kollmansberger as far as medical oncology https://medicine.med.ubc.ca/profiles...llmannsberger/

                        GEMOX does seems like a reasonable route to try unless there is some more actionable target from the molecular analysis or a clinical trial somewhere.

                        Keep us posted.

                        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.

                        Comment


                        • #13
                          Hello Alam.

                          First of all I'm so very sorry for all the nightmare you are been through these years, my brother has been through almost the same.

                          But let the sorrys be aside and let put all the arms over the table.

                          I want to start by recommend you to keep in touch with Dr Einhorn. He isn't only the most experienced person in the world in this type of tumor, he is also an angel and a beautiful person, and is happy to help, so keep in touch with him because he can be a guide.

                          The second: the idea of combining chemotherapy with a c-kit inhibitor is neither new nor bad, I don't know the sunitinib but to my brother, imatinib (gleevec) has almost no side effects (one day he gets up weird or nauseous, but the biggest part of the time is almost normal), so, why not to try it?

                          Dr Einhorn's studies using IMATINIB alone, without chemotherapy, haven't got good results.

                          But again, we are talking about combining chemo with imatinib ... please look for this on Google, it will leads you to a very interesting pdf:

                          "Complete response after imatinib mesylate administration in a patient with chemoresistant stage IV seminoma"

                          (I know that you don't have a Seminoma, neither my brother, and probably neither this guy of the study, but I think it is very interesting in all cases).


                          I wanted to ask you a few questions:

                          how do you feel now?
                          are the mets resectable? is this an option?
                          when you received the genetic mutations, they didn't give you some guidance or recomendations, or maybe some clinical trial for these kind of mutations?

                          About the side effects of the GEMOX I'm afraid that I cannot help you, my brother did 3 cycles of Gemcitabine + Placitaxel (Taxol) so no Oxiplatin, but in his case it was the best tolerated chemo he received.

                          Best of lucks Alam, I'll be checking daily this wonderful forum to see if you update anything.

                          Comment


                          • #14
                            Hi Alam.


                            I'll be thinking of you and sending good vibes for your treatment.

                            Here's a couple of links assessing the efficacy of two different salvage treatments. GEMOX is one. The other is GOP. It looks to me like the GOP is slightly more effective. Might be worth talking to your doctors about it. Or to Dr Einhorn.

                            Best wishes.


                            https://www.ncbi.nlm.nih.gov/m/pubmed/26699830/

                            https://www.ncbi.nlm.nih.gov/m/pubmed/24647526/
                            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

                            Comment


                            • #15
                              Just checking in, Alam. I hope that you're responding to GEMOX and that the side effects are tolerable. My husband started GEMOX this week, so we are a little behind you, hoping to hear good news if you have any.

                              Comment

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