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My Story- 100% Embryonal Carcinoma.. What's next?

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  • #16
    Jared, if you're leaning toward chemo, then go and charge into it !

    As I said, the better decision you can take is the one you are comfortable with and have no regret.

    Truly wish you to take this road only once and never look back.

    All the best,

    Jean-Philippe
    December 15, 2015 : Right I/O. Markers normal.
    December 24, 2015 : Merry Christmas ! 100 % pure EC, no LVI.
    January 7, 2016 : CT scan : 2 RPLN of 8 and 9 mm
    February 2016 : Markers normal.
    March 2016 : Markers normal.
    April 2016 : Abnormal B-HCG (43). 14 mm (from 8) and 10 mm (from 9) lymph nodes.
    April 25, 2016 : Happy birthday ! Relapsed confirmed.
    May 2, 2016 : BEP x 3 begins.
    July 3, 2016 : BEP x 3 ends.
    July 2016 : Serum tumor markers normal. 10 mm (from 14) and 6 mm (from 10) lymph nodes. Back on surveillance !
    December 23, 2016 : Merry Christmas ! Serum tumor markers normal. 6.8 mm (from 10) and no more visible (from 6) lymph nodes. Surveillance continues.
    June 2017 : Serum tumor markers normal. 4 mm (from 7 mm) lymph node. Surveillance continues.

    Comment


    • #17
      Well guys, an update; met with the oncology doc yesterday.

      Starting BEP x2 on Monday. Having a PICC placed on Friday. Too many sticks would get to be way too old, and this just seems easier. A port is probably a little overkill for 2 cycles.. I don't know.

      Even being a nurse and having seen a PICC and central line placed dozens of times, still a little freaky!

      Anyway, just another hurdle to get over!

      Jared
      Age 22 at diagnosis
      2-26-2016- Noticed lump, went to urgent care, doxycycline for 10 days.
      3-21-2016- Urology appointment, ultrasound ordered, suspected TC
      3-22-2016- Ultrasound confirms solid mass left testicle
      3-30-2016- Diagnosis of TC, LDH 233, AFP 2.7, HCG 0.7, CT Clear
      4-14-2016- Left radical inguinal orchiectomy
      4-22-2016- 100% Embryonal Carcinoma, Extensive LVI, Margins clear, Stage 1B
      5-6-2016- PICC line placed
      5-9-2016- Start 2x BEP adjuvant chemo, markers normalized

      Comment


      • #18
        I would probably go for 1 cycle BEP as that should be sufficient. But 2 is not an incorrect choice, especially since you have "extensive LVI". Sounds like you're a relapse waiting to happen if you don't do adjuvant, but that's just my take on it.
        Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

        7/1/2015: felt tiny lump on side of R testicle
        7/30/2015: Ultrasound shows 2 intra-testicular masses.
        7/31/2015: tumor markers normal, CXR clear
        8/5/2015: R orchiectomy
        8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
        8/14/2015: CT abdomen/pelvis clear, Stage 1b
        8/24/2015: started 1 x BEP

        Comment


        • #19
          Originally posted by RJKD View Post
          I would probably go for 1 cycle BEP as that should be sufficient. But 2 is not an incorrect choice, especially since you have "extensive LVI". Sounds like you're a relapse waiting to happen if you don't do adjuvant, but that's just my take on it.
          I think with the "extensive" aspect, the doc and me were in agreement that I might as well be cautious and just knock it out. I only wanna go down this road once for sure.

          Seemed to be a good plan!
          Age 22 at diagnosis
          2-26-2016- Noticed lump, went to urgent care, doxycycline for 10 days.
          3-21-2016- Urology appointment, ultrasound ordered, suspected TC
          3-22-2016- Ultrasound confirms solid mass left testicle
          3-30-2016- Diagnosis of TC, LDH 233, AFP 2.7, HCG 0.7, CT Clear
          4-14-2016- Left radical inguinal orchiectomy
          4-22-2016- 100% Embryonal Carcinoma, Extensive LVI, Margins clear, Stage 1B
          5-6-2016- PICC line placed
          5-9-2016- Start 2x BEP adjuvant chemo, markers normalized

          Comment


          • #20
            Good luck, had 100% EC myself but by the time I caught it, I had some enlarged lymph nodes and a spot on my lung so I went through 3xBEP. The one good thing about EC is that while it is aggressive, it is very responsive to chemo. 3 and half years later and still all clear.
            Tom

            6/28/12 - Diagnosed
            7/3/12 - Left I/O
            7/10/12 - 100% EC Stage IIa
            7/31/12 - 3xBEP Begin
            10/9/12 - All Clear

            Comment


            • #21
              Just another update..

              Cycle 1 of my 2x BEP is finally done! Just one more to go.

              Just a tiny bit of ringing in the ears, but other than that, I still have my hair... Surprisingly.

              My WBC's have went low this week, so I'm avoiding crowds like the plague. Anyway, all is going well so far! Just hoping to power through another long week, finish this up, and get back to work and my normal life! We'll see I guess.
              Age 22 at diagnosis
              2-26-2016- Noticed lump, went to urgent care, doxycycline for 10 days.
              3-21-2016- Urology appointment, ultrasound ordered, suspected TC
              3-22-2016- Ultrasound confirms solid mass left testicle
              3-30-2016- Diagnosis of TC, LDH 233, AFP 2.7, HCG 0.7, CT Clear
              4-14-2016- Left radical inguinal orchiectomy
              4-22-2016- 100% Embryonal Carcinoma, Extensive LVI, Margins clear, Stage 1B
              5-6-2016- PICC line placed
              5-9-2016- Start 2x BEP adjuvant chemo, markers normalized

              Comment


              • #22
                Nice!! After 2 x BEP, you're almost certainly cured. The ringing in the ears will be temporary. The hair should fall out soon.
                Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

                7/1/2015: felt tiny lump on side of R testicle
                7/30/2015: Ultrasound shows 2 intra-testicular masses.
                7/31/2015: tumor markers normal, CXR clear
                8/5/2015: R orchiectomy
                8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
                8/14/2015: CT abdomen/pelvis clear, Stage 1b
                8/24/2015: started 1 x BEP

                Comment


                • #23
                  Originally posted by jgfeiner View Post
                  other than that, I still have my hair... Surprisingly.
                  A bit surprising, mine started to fall out around the beginning of my second bleo-only week, so I'll be surprised if yours isn't gone before next week starts.

                  Dave

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

                  Comment


                  • #24
                    I felt like mine took a long time to fall out, but it was right around the normal time. I can't remember exactly, but I think it was right before the beginning of the second cycle.

                    edit: found it in my notes:
                    Day 17 I noticed some hair coming out. Day 18 i noticed quite a bit coming out in the shower, and I about 95% clogged the shower drain lol. So day 19 (friday) i had my wife give me a #3 buzzcut. Then on day 20 she gave me a #1 buzzcut since it was still thinning
                    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: begin 4xEP, end 9/18/15
                    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!
                    10/22/19: all clears up to this date!

                    Comment


                    • #25
                      Originally posted by biwi View Post
                      Day 17 I noticed some hair coming out. Day 18 i noticed quite a bit coming out in the shower, and I about 95% clogged the shower drain lol. So day 19 (friday) i had my wife give me a #3 buzzcut. Then on day 20 she gave me a #1 buzzcut since it was still thinning
                      I didn't mess around. Second day of hair falling out & I shaved it. Why put off the inevitable?
                      Jan, 1975: Right I/O, followed by RPLND
                      Dec, 2009: Left I/O, followed by 3xBEP

                      Comment


                      • #26
                        Originally posted by Davepet View Post

                        I didn't mess around. Second day of hair falling out & I shaved it. Why put off the inevitable?
                        I figured it would fall out a little slower once it started coming out, and I wanted to get used to my shorter hair look haha.
                        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: begin 4xEP, end 9/18/15
                        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!
                        10/22/19: all clears up to this date!

                        Comment


                        • #27
                          I couldn't put up with the mangy dog look, bald was better to me.
                          Jan, 1975: Right I/O, followed by RPLND
                          Dec, 2009: Left I/O, followed by 3xBEP

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