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  • #16
    Any member who lives in NY?? I want a big favor:
    I want to Send dicom files in his/her mail in order to make a cd copy and send/leave it to MSKCC. I will be grateful

    Comment


    • #17
      I would expect they have a mailing address for that type of thing? I know I mailed my CT discs to Indiana University.

      edit: I see, you are in europe, and are looking to expedite things! Mailing locally will definitely save a few days.
      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!
      9/27/2018 all clears up to this date!

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      • #18
        You can probably send those DICOM files directly to the doc you want to see them. DICOM is a standard format & most docs probably can view it.
        Jan, 1975: Right I/O, followed by RPLND
        Dec, 2009: Left I/O, followed by 3xBEP

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        • #19
          I sent the cd finally. Unfortunately MSKCC surgical team can't perform a surgery due to the size and position of liver mass. From IU (Dr E and Dr Clint) are waiting for a second opinion in pathohistology report (it will be ready on Monday). Since his condition is getting worse we will start chemo on Monday. There are doc, include his surgeon ( an expert tc) who supports tha immature teratoma can be shrinked with chemo. Let's hope that they are right.
          Please for your positive thought..

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          • #20
            Update
            Yesterday we received the second opinion pathology report from I U. They found spindle cell sarcoma! A very rare case due to dr E. He suggests TIP and if there is response to chemo and masses get smaller, surgery as a second step. I really don't know what happened....

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            • #21
              Dr. Ulbright at IU is an incredible pathologist so I am glad that the samples were sent to him. On the other hand, I am sorry to hear that they discovered the spindle cell sarcoma. I am assuming as well as it was a malignant transformation from the teratoma. Rare indeed and I am glad that Dr. Einhorn was able to weigh in as well. Hopefully, they will be able to get TIP started for you all. Did you already start chemotherapy last week?

              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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              • #22
                Sorry to hear things got so crazy, Vaan... Hopefully now that you know what's really going on, you'll be able to get it treated right!!
                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


                • #23
                  He started TIP on 20 of November. I don't know if it is TMT since no biopsy ever revealed teratoma. He describes it as somatic-type malignancy arising from germ cell tumor elements.
                  I will really appreciate your opinion or experiences regarding spindle cell sarcoma. Since it is rare there is not clear which chemo responds better.(TIP or sarcoma-orientated)

                  Comment


                  • #24
                    Oh my! So glad you reached out to IU. Please keep us updated. You both have been through a lot!
                    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


                    • #25
                      Unfortunately my news are not good. My beloved husband passed away on 10 of May at his 36. He relapsed and his EC was transformed into sarcoma. Too aggressive to be cured. I am trying to stay strong for our little girl. I will be happy to hear your experiences regarding how to deal such a difficult situation.

                      Comment


                      • #26
                        Vaan, I'm so, so sorry to hear about your husband
                        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


                        • #27
                          So sorry to hear that :-( Other caregivers here have posted about folks passing but I don't know if they stick around much after that (understandably). Your oncologist should have caregiver support information, you are not alone and many others have had to travel the same difficult path you have.
                          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!
                          9/27/2018 all clears up to this date!

                          Comment


                          • #28
                            So sorry for your loss. My heart goes out to you and your family. Thank you for having the courage to write about your situation, which may save a life in the future. Out of words.
                            Jan '11 - Stage IIIc, Mets in lungs and liver, abdo 7*7, pulmonary embolism
                            Right I/O AFP 13,000, bHCG 110, Scrotal Hematoma, IVC Filter
                            4*BEP AFP 20 end of 4*BEP
                            May '11 - RPLND @ Indiana U - inferior vena cava dissected, necrosis, AFP<5
                            Surveillance (blood & X rays) and all clear for 24 months
                            April '13 - AFP 26 , went up to 46 in a week, Negative CT Scan, Ultrasound and head MRI
                            4xTIP - almost normal AFP, but started rising again
                            2 x HDC with Autologous Stem Cell Transplant - AFP almost normal but started rising again
                            Lost kidneys, damaged liver, chirhosis, ascites 2 liters per day, dialysis 3 times per week, disabled
                            2 Lung Wedge Resections -

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