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26yo Mediastinal Yolk Sac Tumor

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  • #16
    I am sorry to hear that the response from Dr. Einhorn wasn't more positive as far as options. Primary mediastinal tumors are very difficult to treat but they have been treated in the past. Hopefully, you can find a facility that can do the high dose chemotherapy with stem cell transplant. I am certainly wishing you all the best in this difficult situation.

    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

    Comment


    • #17

      thank you so much guys for your support and attention. seriously i feel like i couldn't thank you enough.

      @Davepet you're right! sorry for jumping into conclusion too quickly! i must have lost myself in translation xD
      @sanis yes. I have also heard of hyperthermia, but since we live in Indonesia, very little information about hyperthermia is available in this country. but we'll surely take your suggestion into our consideration. thanks a lot !
      @Mike thanks Mike! we really do hope there is still miracle for Ben.

      Comment


      • #18
        Hi all. I thought I might give you an update of my boyfriend.
        He has just finished the third cycle of chemo consisting of TIP (Taxol, Ifosfamide and Cisplatin) for 5 days / in patient today.
        This is the first cycle of TIP, and I must say this went harder than BEP for his first cycle and T+BEP+Oxaliplatin for his second cycle.
        He's been feeling fatigue, nausea & vomiting and loss of appetite. He didn't have these side effects from the previous cycles.
        Emend was given on the first three days, but on the 4th day, he developed the nausea and vomiting.
        On the other hand, we are thankful that his AFP has also gone down again to 54000 on the 4th day of chemo (previously it was 59900 before the start of third cycle). Still, not good enough but at least it has shown a downward trend.
        For now, he'll have around 2 weeks of rest days, and he will start the 4th cycle with TIP again on the April 2nd.

        Anyhow, I am concerned because he has been feeling this on and off chest pain in this cycle. The pain is not something he can't endure though.
        I'm just so afraid that the tumour in his mediastinum is progressing, as chest pain was the first symptom he had experienced back in November last year.
        We're not sure what the cause of this pain, and may not be able to find out till he has done the PET Scan, which is scheduled to be done after he has finished his 4th cycle.

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        • #19
          So sorry your boyfriend is dealing with increased vomiting and nausea on TIP. I'm hoping his AFP continues to decrease and tumors shrink. As far as pain in the chest, that would be best answered by a medical professional.
          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.

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          • #20
            Just did the blood test on Wednesday in different lab (as currently we're back in our hometown for my boyfriend's rest days), his AFP grew up again to 60426. That was the day 9th of this cycle.
            This fluctuation of AFP is driving us crazy.. Hopefully it is the dying tumour cells.

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            • #21
              Keeping your boyfriend and you in my thoughts.
              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


              • #22
                Hopefully, the AFP is just dying cells or perhaps slight differences in the lab. While the numbers seem far off, at those levels they really might not be anything more than lab differences. I am not an expert on the labs sensitivities and fluctuations but just a thought to keep in mind.

                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

                Comment


                • #23
                  I had VIP and can vouch for the nausea, loss of appetite, and in general it's just rough. Particularly after the first cycle. I too had chest pains during my second cycle. There was no easy explanation since so much is happening with your body under those circumstances.

                  Sorry you're going through this. Enjoy the 2 week break as best you can. Hopefully he'll be able to eat eat eat and get his strength back up for the next round.
                  Aug 2013: vague fevers, exhaustion, weight loss, night sweats
                  Sept 2013: became a father
                  Oct 2013: diagnosis PMNSGCT, ~5cm x 5cm, AFP: 43 bHCG: 0
                  Dec 2013: cycle 1, VIP 3wks
                  Jan 2014: cycle 2, VIP 3wks, became allergic to polysorbates
                  Feb 2014: AFP 813, bHCG: 0, scrapped chemo
                  Feb 2014: upper left lobectomy, 7x6x5 cm tumor, teratoma / adenocarcinoma
                  March 2014: AFP 70
                  March 2014: AFP 19
                  Apr 2014: AFP 11 !!!!
                  Feb 2018: AFP & scans clear for 4 years

                  Comment


                  • #24
                    Hi All.
                    Long time no checking up this forum. I have an update of my boyfriend's condition.
                    He had finished his 2nd cycle of TIP in early April. Had PET Scan on the 2nd week of April, PET Scan result showed there is a minimal shrinkage of the tumor, however there are still a lot of active cells in the primary tumor, including the nodule in lungs still shows active cancerous cells. Our doctors had concluded that he is resistant to the platinum, which make it useless to continue the chemo with the TIP or any other standard dose chemo. They said the only and probably the last resort is to do HDC with stem cell transplant for the rescue. We've heard a brief explanation regarding the procedures etc, they also said that, even if he undertakes this HDC, the chance of cure is only 5%-10%, and it's 0% of cure if he doesn't go for HDC. Possibility of doing surgery to remove the tumor is also not feasible.

                    My boyfriend has decided, he's not going to do the HDC. Aside from its low chance of cure, it is also not feasible for us to do it financially. As our insurance does not cover it.

                    It's so devastating knowing that all the tough days of chemo didn't bring any favorable result in the end. For now, he doesn't have any medication nor any treatment. He has been consuming a lot of herbs and doing meditation, etc. But we all know it can be considered as palliative treatment.

                    Hope everyone is doing fine and healthy.

                    Comment


                    • #25
                      Sorry to hear about your struggles. I can imagine that is very frustrating. You and your boyfriend will be in my thoughts!
                      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 - 9/18/15: 4xEP
                      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!
                      3/29/2018 all clears up to this date!

                      Comment


                      • #26
                        I am so sorry to hear this news and I wish I had some magical insight to make things easier for you and Ben but we all know that that insight doesn't exist. It had to be an incredibly difficult decision for him to make and I admire his intestinal fortitude in making it. I suppose its time to take the time he would have felt miserable in treatments and make as many moments out of it as you can. Wishing you both peace during this most difficult of times.

                        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

                        Comment


                        • #27
                          Oh no! So hard to hear...I will keephim and you in my thoughts and prayers.
                          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


                          • #28
                            That news is hard to contemplate. I'm hoping you have the support you need to get through this, but moreso to be able to maximize your invaluable time together. No doubt it took an act of great will to make that decision.
                            Aug 2013: vague fevers, exhaustion, weight loss, night sweats
                            Sept 2013: became a father
                            Oct 2013: diagnosis PMNSGCT, ~5cm x 5cm, AFP: 43 bHCG: 0
                            Dec 2013: cycle 1, VIP 3wks
                            Jan 2014: cycle 2, VIP 3wks, became allergic to polysorbates
                            Feb 2014: AFP 813, bHCG: 0, scrapped chemo
                            Feb 2014: upper left lobectomy, 7x6x5 cm tumor, teratoma / adenocarcinoma
                            March 2014: AFP 70
                            March 2014: AFP 19
                            Apr 2014: AFP 11 !!!!
                            Feb 2018: AFP & scans clear for 4 years

                            Comment

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