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Recurrance??? Next course after BEP?

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  • #16
    Here is the response from Dr Einhorn:

    Standard salvage chemo would be 4 courses of VeIP or TIP or high dose carbo + etoposide and peripheral blood stem cell transplant. Despite the long distance might be worthwhile for him to make the trip to Insianapolis so we can evaluate him. Very strange.

    I'm thinking I'll go as soon as i can arrange it, but a few questions:

    Could a PET scan help at this point?
    It seems like he is thinking the salvage treatment is needed, but is that done based on the HCG alone? Im not optimistic about potential for false positive, but this case history has been weighing on my mind False-Positive Serum Human Chorionic Gonadotropin (hCG) in a Male Patient with a Malignant Germ Cell Tumor of the Testis: A Case Report and Review of the Literature

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    • #17
      Here is the deal: you have the worlds most prominent TC doc suggesting you come & see him. If that is possible for you, go there as soon as you can arrange it. Your odds go up exponentially in his care. If you can afford to do it, do it.

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

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      • #18
        UGH!!! So sorry you are still in limbo of knowing if there is a reoccurance or not. In your situation since you and your doctor have been communicating with Dr. E. I would travel ASAP to IU. Again, so sorry that no imaging has caught anything.
        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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        • #19
          Continuously rising bHCG with them into the hundreds means it is pretty likely that there is some TC somewhere, even it is not showing up on scans yet :-(

          Since you have already had 3xBEP and this is a post-chemo recurrence I would most definitely go visit IU and have myself thoroughly evaluated. Or some other highly regarded TC institution. Post chemo recurrence is an area where expertise matters.
          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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          • #20
            "Recurrences were located at retroperitoneum (85.7%), pelvic nodes (6.3%), spermatic cord (1.6%), mesenterium (1.6%), and lung (1.6%), while raised BHCG levels was the only sign of relapse in two cases (3.2%)". So it's rare, but not impossible.
            45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
            Waiting...

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            • #21
              Hi all. I owe you an update. I just finished a week of VElP, inpatient. No fun. MRI showed bone metastases, primarily in my vertebra, but also ribs.
              For several months I had been having back/rib pain, I did tell my doc, but should have told ya'll as well, possibly could have sped up the testing. Turns out tumor mass pressing on my spinal cord had been giving me lots of muscle pain, when I (and my doc) had been thinking it was just a normal back injury. There is some damage to vertebra that will likely need work, but I felt like treatment should start ASAP. I trip to IU is probably still in my future, but I'm not sure when. Thanks for all the help and thoughts.

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              • #22
                Crap!! Hope you're ok... Hope VEIP works well for you. How does it feel, is it similar to BEP?
                July 2016 - Left I/O
                December 2016 - BEPx3
                All clear for 1 year!

                My Testicular Cancer Support Kit
                First Oncologist Visit Checklist
                Simplify Cancer Podcast

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                • #23
                  Sorry to hear the news that they found it in your bones but am glad that they have gotten treatments started. Hopefully, you are tolerating the VeIP as well as can be expected. 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.

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                  • #24
                    VeIP just plain blows. But the good thing is that compared to 3xBEP its over with alot quicker. Sorry you are having to deal with a relapse. If you need to vent or have questions i will do my best to help you through it.
                    Jan 2012- U/S mass in Left testicle
                    Feb 2012- I/O performed to remove cancer
                    Mar 1,2012- pathology pure seminoma
                    Mar 7, 2012 PET SCAN stage IIa
                    April 2012 Mayo clinic carbolite.
                    May 2012 carbolite failed, started BEP x3
                    August 7th 2012- BEP complete
                    April 2013 CT/PET show relapse
                    May 2013 RPLND
                    Aug 2013 Relapse again Started VIeP x2
                    Oct 2013 HDC AUTOLOGOUS
                    Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
                    Feb 2014 confirmed false positive all clear FINALLY !
                    Jan 2015 1 year cancer free Pet/CT scan
                    Jan 2016 2 years cancer free "Pet/CT scan
                    Jan 2017 3 years cancer free "Pet/CT scan
                    Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

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                    • #25
                      OMG, bad news, but recurrence was obvious. So strange for seminoma to act so fast and agressive. Hold on, man.
                      45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
                      Waiting...

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