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26yo Mediastinal Yolk Sac Tumor

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  • 26yo Mediastinal Yolk Sac Tumor

    Hi All. I've been following this forum for a little while, so many helpful tips and inspiring journey of you all.

    My boyfriend, aged 26 yrs this year, developed a symptom of a chest pain, which came on and off, in last November 2017. He has only had the proper diagnosis from an oncologist on January 15th, 2018.
    He has yolk sac tumor, with primary lesion in mediastinum area, measured 4 cm x 9 cm x 11 cm, pressing the superior vena cava. His only symptom were only chest pain that goes on and off, swollen face and neck. The tumor has metastatized to lungs, but not to other area. His AFP at initial diagnosis was 24000, others are normal.

    Started the BEP chemo on the Jan 16th, first day of chemo, his AFP was at 50.000ish and finished on Feb 8th. Did X-ray and tumor marker test before 2nd cycle of chemo (Feb 12th), his x-ray showed widening mass in the mediastinum area, and more spots in lungs than before chemo. His blood test, however, showed a decrease of AFP to 48.000, due to its unfavorable decrease, our oncologist switched to GETUG 13 Protocol, which added Taxol on the first day, followed by BEP and ended with Oxaliplatin on day 10. On day 7th, his tumor marker showed an even more elevated AFP, which was 62.000. Our oncologist in Malaysia referred us to National Cancer Center in Singapore to hear Doctor Ravi suggestion (a more expert in GCT), he advised us to continue with the Oxaliplatin, take MRI to see if there is another source of AFP, and do another CT Scan & tumor marker test before cycle 3 starts.

    I have talked to Dr Einhorn regarding his case, dr E said that the chemo my boyfriend is having does make sense, however he will treat him with VIP, instead Getug 13. Regarding the elevated AFP, dr E advised us to take another test sometime within next week to make sure if the elevated AFP is due to shrinking tumor or he is resistant to chemo -which is not a good thing.

    I am wondering, if any of you, has experienced this situation? Elevated AFP during chemo, etc?

  • #2
    Sorry to welcome you here. Glad you have already contacted Dr. Einhorn as he is the TOP TC doctor in the states, and probably the world. I would follow whatever protocol Dr. Einhorn has suggested or suggests in the future. I also hope the AFP marker is drawn again as he has advised. I have read about increase of AFP during chemo and even post chemo. Wishing your boyfriend and you the best, please update us when you are able.
    Son Grant
    dx 12/21/16 at age 17

    BEP x3
    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: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

    Comment


    • #3
      From the criticism I have heard, the GUTEG 13 protocol can be a bit difficult as far as the tumor marker decline as some patients will have elevated tumor markers, especially after the first round of chemotherapy, due to destruction of the tumor (which is obviously a good thing). The additional imaging in correlation with the AFP levels should help provide additional information as Dr. Einhorn mentioned. It is a painful period of waiting but hopefully the imaging would provide some good results.

      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


      • #4
        My boyfriend is doing the brain MRI and chest X-ray today. I will update you guys on the result Thank you

        Comment


        • #5
          Sorry to hear you guys are having such as rough time! Please keep us posted...
          July 2016 - Left I/O
          December 2016 - BEPx3
          All clear for 1 year!

          My Testicular Cancer Support Kit
          First Oncologist Visit Checklist
          3 Things I Wish I Knew Before I Started Chemo
          3 Reasons Why People Disappear From Your Life During Cancer
          Simplify Cancer Podcast

          Comment


          • #6
            Hi guys. Brain MRI result came out all clear, no mets in the brain. However, AFP is still rising up significantly and now it's 90.000! Chest x-ray today however, showed a slightly better result than the previous x-ray. AFP is driving us crazy! He will undergo the 3rd cycle on next Monday, this time, they have to install a chemo port in the groin. Still unsure what drugs will be used in the 3rd cycle, but surely cisplatin is going to be there.

            I have emailed Dr E regarding this issue, and still awaiting for his reply now.

            In the meantime, I'd like thank you very much for your kind interest and supports! Stay healthy and safe y'all

            Comment


            • #7
              Hopefully, Dr. Einhorn replies.
              sorry to hear that AFP is still rising. Wishing you both the best as you move towards the 3rd round.
              Son Grant
              dx 12/21/16 at age 17

              BEP x3
              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: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

              Comment


              • #8
                Hi Guys. I have not yet got Doctor E's reply till now.
                Today, we went to see our oncologist again, did the blood test and chest x-ray. AFP is finally going down, but still not good enough, now it's 72000. We're grateful though it's finally going down. Chest x-ray shows a reduce of lung nodules but the primary tumor in the mediastinum has not yet shrunk.

                We're considering to continue the treatment in National Cancer Center in Singapore. It is still not clear whether he will continue the GETUG 13 Protocol or switch to TIP. Our oncologist said it is most likely that my boyfriend needs to end up with stem cell transplant. Any experience/idea regarding stem cell transplant?

                Comment


                • #9
                  So sorry. There are a few here that have had stem cell transplant, hopefully they will chime in soon. Wishing you both the best.
                  Son Grant
                  dx 12/21/16 at age 17

                  BEP x3
                  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: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                  Comment


                  • #10
                    Hi vnsanatasya. I cannot speak to the bone marrow transplant, but know that if my husband were to recur, that is the treatment option available. Would love to connect with you - my husband was diagnosed with the same thing via similar symptoms in June, and underwent 5 cycles of chemo, 4 prior to resection (3x VIP and 1xBEP) and then an additional cycle of EP after surgery. He experienced some odd results along the way, and the best anyone can figure, it may have been the result of tumor lysis syndrome.

                    Comment


                    • #11
                      Hi @TinyJenni. I have sent you a private message to connect further with you Thanks for reaching out to me

                      Comment


                      • #12
                        Hi Guys. Today I just got reply from Dr Einhorn:

                        "As mentioned before, these are very advanced cases and difficult to cure. He is clearly not curable by continuing the same treatment. It has helped him as he feels better but further therapy with the same drugs will not provide additional benefit. There is possibly a small chance for cure with high dose chemo with carboplatin + etoposide followed by peripheral blood stem cell transplant. In my opinion, there would be a zero chance for cure with any other approach."


                        The fact that even the most experienced doctor in TC says that my boyfriend has almost no chance to be cured really is devastating..

                        Comment


                        • #13
                          Originally posted by vnsanatasya View Post
                          The fact that even the most experienced doctor in TC says that my boyfriend has almost no chance to be cured really is devastating..
                          That is NOT what he said, what he did say was :

                          Originally posted by vnsanatasya View Post
                          There is possibly a small chance for cure with high dose chemo with carboplatin + etoposide followed by peripheral blood stem cell transplant. In my opinion, there would be a zero chance for cure with any other approach."
                          He is telling you the current treatment is not working & the only option is high dose chemo with stem cell transplant. If your current docs won't do that find docs that will.While the odds are not excellent at this point, it's not time to give up.

                          Dave
                          Jan, 1975: Right I/O, followed by RPLND
                          Dec, 2009: Left I/O, followed by 3xBEP

                          Comment


                          • #14
                            hi vnsanatasya

                            i am so sorry to read the bad news.

                            but please dont give up yet. There were worse cases getting cured by high dose chemo and many of those are documented on this forum.

                            Please try to proceed with high dose chemo if you can.

                            Comment


                            • #15
                              Also please consider hyperthermia if it is within reach - it is promising even for TC, and you can have that in parallel to chemo. of course consult your doctor.

                              Comment

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