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Please help! We are desperate!!

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  • Vaan
    started a topic Please help! We are desperate!!

    Please help! We are desperate!!

    My husband relapsed with immature teratoma after 4 xBEP. His surgeon in Europe suggests HDC and then surgery (if it is possible) and dr E suggests only surgery - chemo will not help. I will really appreciate your suggestion. I feel desperate. I want to help him!

    His medical report:

    Disease Course:
    The disease manifested initially as a hemorrhagic left supraclavicular lymph node, following minor trauma (11/2015). Final diagnosis was delayed (02/2016) as the supraclavicular mass had been regarded as a post-traumatic hematoma. Due to its atypical clinical course and compression of the jugular vein, surgery was performed which revealed a hemorrhagic lesion with soft tissue components. Pathology report showed non-seminomatous germ cell tumor-embryonic carcinoma. At the time of diagnosis aFP was 1000, LDH: 800 and hCG was normal.
    During disease staging, ultrasound examination showed testicular microlithiasis and a tumor measuring approximately 2 cm, while abdominal computed tomography revealed an extensive left retroperitoneal (total dimensions: 15x8cm) necrotic lymph node mass abutting the ipsilateral psoas muscle and extending to the renal hilum, as well as a right retrocrural (total dimensions: 8x6cm) necrotic lymph node metastatic mass.
    Orchectomy was performed (03/2016) and pathology showed non-seminomatous germ cell tumor-embryonic carcinoma.
    Between 03/2016 and 06/2016 the patient underwent 4 cycles of BEP regime without serious complications. At the end of chemotherapy, follow-up computed tomography showed complete resolution of the left supraclavicular mass, mild size decrease of the left retroperitoneal mass and no differentiation of the right retrocrural mass.
    Due to remaining retroperitoneal masses post-chemotherapy, a retroperitoneal lymph node dissection was decided which was performed on 08/2017, in an experienced center of reference. Almost total resection (with a remaining 0.9cm component in contact with the renal vein) of the left reptroperitoneal mass with nerve sparing technique was achieved. At the same time, intra-surgical biopsies of the right retrocrural mass were obtained. Pathology report of the resected left retroperitoneal mass as well as the biopsies of the right mass, showed only necrosis/fibrosis. Thus no further treatment was suggested and 4-month follow-up computed tomography was recommended.
    During follow-up, there was gradual increase in size of the right retrocrural mass, without aFP and LDH increase. A PET-CT scan was suggested which showed mildly increased uptake.
    Due to gradual increase in size, resection of the right retrocrural mass was decided which was performed on 09/2017 at the same medical center. The retrocrural mass was completely resected and post-surgical pleural effusions represented the main complication which was resolved following tube placement. Pathology report of the resected mass revealed only necrosis/fibrosis, without teratoma or tumor cells. Thus no further treatment was suggested and 4-month follow-up with computed tomography was recommended.
    On 11/2017, about 1 months following the resection of the retrocrural mass, the patient complained of mild abdominal pain, nausea and vomiting. Blood investigations at that time showed liver dysfunction with elevated SGOT, SGPT and GGT. The rest of blood analysis, including tumor markers, was unremarkable. An ultrasound examination of the abdomen showed an extensive intrahepatic/perihepatic mass. Computed tomography was ordered (CT 05-11-2017) which revealed a large intrahepatic mass (approximately 13cm on maximum diameter) with necrotic and soft tissue components, containing thick septa, as well as a right retrocrural/posterior mediastinal mass of the same constitution (approximately 7x13cm). An ultrasound-guided biopsy of the masses was ordered. Pathology of the tissue sample of the retrocrural mass showed immature teratoma.

  • Tarc79
    replied
    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.

    Leave a comment:


  • biwi
    replied
    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.

    Leave a comment:


  • JoeTheAstronaut
    replied
    Vaan, I'm so, so sorry to hear about your husband

    Leave a comment:


  • Vaan
    replied
    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.

    Leave a comment:


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

    Leave a comment:


  • Vaan
    replied
    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)

    Leave a comment:


  • JoeTheAstronaut
    replied
    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!!

    Leave a comment:


  • Mike
    replied
    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

    Leave a comment:


  • Vaan
    replied
    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....

    Leave a comment:


  • Vaan
    replied
    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..

    Leave a comment:


  • Davepet
    replied
    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.

    Leave a comment:


  • biwi
    replied
    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.

    Leave a comment:


  • Vaan
    replied
    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

    Leave a comment:


  • biwi
    replied
    Something to keep in mind as well is that immature teratoma and mature teratoma are very different. Immature is aggressive and malignant, whereas mature teratoma is non-malignant and chemo-resistant. Immature terratoma is not discussed very much on these boards as it is pretty rare. Usually when teratoma is brought up it is mature teratoma.

    Leave a comment:

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