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Just finished chemo and I am scared

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  • #16
    I'd always heard that false positives were more likely with PET/CT scans.
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

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    • #17
      So you will get RPLND? Wishing you the best.
      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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      • #18
        Yes, RPLND. I meet with the urologist on Friday.

        So it turns out my AFP went from 36 to 19. As a matter of fact, my AFP has been all over the place lately. My last 4 tumor marker blood tests for AFP have been as follows: 27, 36, 25, 19. Has anyone experienced anything like this before? My doctor does not think this is cancer because of how much the AFP has gone back and forth. He claimed that with cancer it usually keeps rising. Instead, he believes it to be another factor that is causing it to fluctuate in that range. I do also have liver issues, which can raise AFP above normal. With a negative PET scan and AFP now well below 25, there seems to be a stronger indication it is not live cancer. Still plenty nervous though!

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        • #19
          It does not seem likely that live cancer will be found, most likely necrotic tissue, or even teratoma.Something is showing up,so surgery is the way to find out what's in there.

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

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          • #20
            hi Joe,
            great news. this is why i was asking your about your liver functions - your afp fluctuations have likely to do with your liver.

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            • #21
              That is good to hear. Sounds like you are being cared for well. Best of luck with the RPLND!
              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
                Yes, I have fatty liver. When I said my liver was fine before I was mainly talking about there being no cancer found in it. But yes, my liver overall could be better. Btw, you guys are the best, thanks for all your support. I will let everyone know how it all turns out. I so desperately want this to be over.

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                • #23
                  To comment on the AFP issue Iíve read on here that there are cases that blood markers increase due to chemo because cells die and upon death release their proteins. Einhorn says blood tests are tricky which is why you need multiple ones. What we look for is a trend and yours is trending down which would suggest no active cancer. My AFP started at 5 during chemo went to 12 then post chemo went to 19. A few weeks later it was down to 10 and now in the single digits so while mine didnít go as high I too had a spike for whatever reason which turned up to be nothing.
                  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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                  • #24
                    Given the situation though that PET scan was the best possible news! Iíve read that EC can transform to different cell types and if yours got to your upper lymph it may have had time to also transform into teratoma. It sucks you need surgery, but most likely this is the final step on the way to a cure!
                    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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                    • #25
                      The downside of PET CT is that it does not see Teratoma, meaning it is possible your surgery will find some. It is not affecting your chance of survival if it is taken out, just saying.

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                      • #26
                        Following your thread and wishing you the best. AFP is such a bugger, often NOT following the path it's supposed to take! My son's (Mediastinal Yolk Sac tumor) AFP dropped significantly after rounds 1 and 2 of chemo but not after rounds 3 and 4. This was of great concern to everyone except Dr. E. who felt that it would drop after the tumor came out. And it did. It was 24 pre-surgery, 14 after surgery and barely registered 1 month post-op. He starts Surveillance next month and we've enjoyed not having to think about AFP for a few months!!! Thinking about you and wishing a speedy recovery! xoxoxo

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                        • #27
                          I finished my RPLND surgery 3 weeks ago and the pathology only showed teratoma in 2 places. No EC was found. THANK GOD!! I am now finally on surveillance!

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                          • #28
                            hi Joe,
                            great news Now rest and enjoy your life which you are back to!!!

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                            • #29
                              Awesome. Has your AFP been tested recently too? Be interesting to see where it levels off.
                              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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                              • #30
                                Congrats, man, great news!!
                                July 2016 - Left I/O
                                December 2016 - BEPx3
                                All clear for 1 year!

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