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3 rounds of BEP Chemo didn't work

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  • 3 rounds of BEP Chemo didn't work

    Hi All,
    I just finished my 3rd cycle on the 6th and found out today that the lymph node didn't decrease in size. The initial diagnosis was 85% embryonal 14% yolk and 1% teratoma. My doctor is referring me to Dr. Edward Messing, chief of urology at the University of Rochester to determine the next step, either surveillance or rplnd. Has anyone else been in this situation? I'm curious what route you took?
    Thanks,
    Geoff

  • #2
    I don't know your full story, but if you have an enlarged lymph node that is not responding to chemotherapy, then it is likely teratoma. RPLND would be recommended.
    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


    • #3
      Surveillance hardly sounds like an option to me. After all, if it was serious enough to treat with 3xBEP to begin with, then why wouldn't you still be concerned now? RPLND is not fun, but it is the only option for teratomas. From what I understand, it is not very uncommon to need to do an RPLND after chemo. I'm sure there are lots of guys around here who have experience with that.
      11/16/16 Went to primary care complaining of testicular pain. Wrongly diagnosed with epididymitis. Told not to worry, it'll go away on its own.
      12/8/16 Diagnosed with TC in left testicle.
      12/9/16 Left I/O.
      1/5/17 Tumor Markers officially back to normal -- Stage 1A with 70% EC.
      1/26/17 Robotic RPLND using left MSKCC template as primary treatment.
      2/2/17 Pathology results: pN0. They say I still have a 10% relapse chance.
      5/9/18 One and a half year all clear.

      Comment


      • #4
        I Hear you about the surveillance. I think I'm a bit shell-shocked after going through the hell of chemo only to turn around and face RPLND. The odds were so good that it would be gone that it's really deflating.

        Comment


        • #5
          I hear you, Trpnbily. It's psychologically hard when your treatment path doesn't play out right. I took RPLND as a primary treatment. If I also end up having to do chemo (they give it ~10% chance of playing out that way), I'll feel ****ty about life and my choices. Bear in mind that lots of guys who do RPLND also have to do chemo afterwards, and vice versa. I haven't (at least not yet), but there's lots of guys here who do both. You're definitely not alone.
          11/16/16 Went to primary care complaining of testicular pain. Wrongly diagnosed with epididymitis. Told not to worry, it'll go away on its own.
          12/8/16 Diagnosed with TC in left testicle.
          12/9/16 Left I/O.
          1/5/17 Tumor Markers officially back to normal -- Stage 1A with 70% EC.
          1/26/17 Robotic RPLND using left MSKCC template as primary treatment.
          2/2/17 Pathology results: pN0. They say I still have a 10% relapse chance.
          5/9/18 One and a half year all clear.

          Comment


          • #6
            HI Geoff, sorry to hear that, but at least you have options. A lot of guys on this forum have successfully gone through RPLND. Hopefully you can do it too. Concentrate on the next steps and go for it. Good luck.

            Comment


            • #7
              I had 4xEP and then 6 months later, RPLND. You will get through it! Honestly, other than the first recovery week or so, RPLND was easier than Chemo.

              What was your lymph node size pre-chemo, and post-chemo? And what were the timings involved? I assume makers are all normal?
              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!

              Comment


              • #8
                I really appreciate the support.the lymph node was 1.97 pre-chemo in December and it's 1.75 now. The afp was 5 post L/O, hopped up to 22 in January, pre-chemo, and is 7.8 now.

                Comment


                • #9
                  Trpnblly,

                  I don't know everything that is going on, but I went through 4BEP and then had my RPLND about a month and a half after I finished Chemo. I as well had Teratoma In my Initial germ cell, and had nodes that were still enlarged after my rounds of chemo. I was glad I did the RPLND, because when they did my RLPND they found Teratoma in the nodes they removed. I know After chemo you just want to be done! But you are almost there! Hang in there and good luck!

                  Eric
                  3/25/11 swelled up at Disneyland
                  3/29/11 Ultrasound
                  4/7/11 Left I/O
                  Pathology, immature teratoma 70% Yolk Sac tumor 10% Embryonal Carcinoma 10% and seminoma 10%
                  3 Lymph nodes affected
                  IIIB
                  BEP x 4 5/2/11-7/15/11
                  RPLND 8/15/2011 Two nodes Immature teratoma
                  9/22/11 ALL CLEAR!!!!
                  11/26/11 ALL CLEAR
                  2/21/12 ALL CLEAR

                  Comment


                  • #10
                    TRNNBLLY~ Wishing you the best! Am I reading correctly that your AFP post chemo is 7.8? I would defnitely consult with an expert, please keep us updated.
                    When was your LAST AFP drawn?
                    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.

                    Comment


                    • #11
                      The last AFP was drawn on the 10th. (Monday the 6th was my last Bleo of the 3rd cycle). Tomorrow, they are going to check it again tomorrow and do a ct scan of my chest and possibly a blood transfusion (my hgb was at 6.7 on the 10th) depending on the results of the labs.

                      Comment


                      • #12
                        Originally posted by Trekga View Post
                        TRNNBLLY~ Wishing you the best! Am I reading correctly that your AFP post chemo is 7.8? I would defnitely consult with an expert, please keep us updated.
                        When was your LAST AFP drawn?
                        Seems about right for an AFP at that stage to me.
                        24 year old diagnosed 6/11/16
                        Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
                        Pre/o CT Clear
                        Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
                        Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
                        Post-op CT with one enlarged lymph node - 1.5x1cm
                        Borderline stage 2B/3B
                        BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
                        CT and markers clear - in remission - 28/2/16

                        Comment


                        • #13
                          Dude I had 4xBEP and my residual mass was way larger than yours. I had an orchiectomy and RPLND with Dr Messing (who did a great job with both) and the pathology came back negative for each. It was the best feeling to hear him say I had unnecessary surgeries. Now 7 months in remission so don't give up hope.
                          3/10/16 Large mass detected in abdomen 8x7 cm
                          3/16/16 Diagnosed with NSGCT; Intermediate TxN3M0S3+
                          3/21/16 Begin 4xBEP
                          6/6/16 Complete 4xBEP
                          6/17/16 Left I/O Only fibrous tissue present
                          7/14/16 CT Scan shows moderate decrease in size of mass 6 x 5.3 cm
                          8/2/16 PC-RPLND Necrotic tissue with no viable tumor found
                          8/16/16 Begin Surveillance.

                          Comment


                          • #14
                            Whoops, I'm just seeing your response now. Messing did a great job with the RPLND on me as well. My surgery also came up with dead tissue in the removed lymph nodes and all has been clear since and I expect it to stay that way!

                            Comment


                            • #15
                              Good to hear bud. Messing is kind of a gift in our neck of the woods. They don't have anyone like that in Buffalo where I'm from. If he weren't in Rochester, I probably would've had to go to NYC and paid out of pocket due to insurance restrictions.

                              1 year and 2 months in remission. Let's keep fighting!
                              3/10/16 Large mass detected in abdomen 8x7 cm
                              3/16/16 Diagnosed with NSGCT; Intermediate TxN3M0S3+
                              3/21/16 Begin 4xBEP
                              6/6/16 Complete 4xBEP
                              6/17/16 Left I/O Only fibrous tissue present
                              7/14/16 CT Scan shows moderate decrease in size of mass 6 x 5.3 cm
                              8/2/16 PC-RPLND Necrotic tissue with no viable tumor found
                              8/16/16 Begin Surveillance.

                              Comment

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