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  • #16
    Reached out to Dr. Einhorn, he said the same exact thing. His words:
    This is PROBABLY recurrent cancer with microscopic disease in abdominal lymph nodes or lungs. 3xBEP will easily cure you, but no need to rush. Several comments:
    1. Need to repeat hCG to make certain not a lab error
    2. Marijuana can cause elevated hCG levels. If you have recently used marijuana would stop and repeat hCG in a week
    3. would also get testis ultrasound to make certain the cause of rising hCG not coming from a second primary in the remaining testis.

    So I will begin the process of confirming what is going on with me. Thanks for the help, will keep updating.

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    • #17
      It seems doc E has trained us well
      Jan, 1975: Right I/O, followed by RPLND
      Dec, 2009: Left I/O, followed by 3xBEP

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      • #18
        If it is a recurrence just keep Dr. E’s words in mind that it will easily cure you! BEP isn’t easy but my experience wasn’t consistently bad and a year out just seems like a bad dream.
        3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 11/16/17 All Clear! AFP continues to drop! 3/19/18 All clear!

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        • #19
          Ok, so a little update. Had bloodwork redone-- came back clear!! I was very happy to hear that the HCG was not tested correctly. My oncologist had me retake one more blood test for good measure. Now here's the thing that's eating at me, an HCG test can come back false positive, but can it come back false negative? I am kind of getting myself worked up about it due to the fact it's a 1-1 series tie at this point. If anyone can answer if they have in fact had an instance where there blood test came back false negative please let me know. Keeping my fingers crossed!

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          • #20
            Ok, so a little update. Had bloodwork redone-- came back clear!! I was very happy to hear that the HCG was not tested correctly. My oncologist had me retake one more blood test for good measure. Now here's the thing that's eating at me, an HCG test can come back false positive, but can it come back false negative? I am kind of getting myself worked up about it due to the fact it's a 1-1 series tie at this point. If anyone can answer if they have in fact had an instance where there blood test came back false negative please let me know. Keeping my fingers crossed!

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            • #21
              Great to hear! I think it is probably less likely, although in reality I have no idea.
              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!

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              • #22
                Thank goodness! Just have things retested to see if it is indeed still normal level. I'm glad you reached out to Dr.E.
                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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