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Relapsed pure embryonal carcinoma

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  • Relapsed pure embryonal carcinoma

    Well its official. I'll be starting 3x bep monday. Getting a port saturday. Honestly, I'm just ready to kick this things ass, get through chemo and never see it again!

    I will post again the ct findings and I'll keep this my on going thread from here on out.

    "There is evidence of mildly enlarging lymph nodes in the upper mesentery. There is a new 19 x 23 mm lymph node lower in the mesentery to the left midline.
    There is an 18 x 21 mm lymph node immediately adjacent to the aorta at the bifurcation
    There are new lymph nodes in the right external iliac lymph node chain measuring 9 mm and a lymph node behind the right rectus abdominis muscle measuring 8 mm."

    We are figuring due to a complication of the robotic rplnd, the cancer has been able to spread to the mesentaric lymph nodes. No matter, it still has no chance!
    11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

  • #2
    JOE~ Ugh!!! Great attitude. Looking forward to your updates.
    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


    • #3
      Good luck Joe!

      Comment


      • #4
        Joe, Sorry to hear you now have to go through chemo. But, I believe you will get through this.Getting a port is a good decision . I know how disappointing the need for chemo must be, but keep up with the anti nausea medicine, and keep hydrated, I keep all you warriors in my prayers.
        Last edited by Chemin; 04-28-17, 01:53 AM.
        9/6/13 Left I/O. 18 year old son diagnosed 9/13/13 Stage 2C. Path report: embryonal and yolk sac with spermatic cord involvement and lymphatic invasion BEP x 3 finished 11/25/13. PC-RPLND with Dr. Foster at IU on 1/21/14. Found only dead cancer! Surveillance as of 1/23/14. All clear as of 5/2018.

        Comment


        • #5
          Good luck, man, hope it goes well!!
          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

          Comment


          • #6
            Hey Joe, take comfort in someone who is 6.5 years post relapse for pure EC. You'll get through this, I am sure.

            Take care, DZ

            Jan 2009: RHS (Seminoma) & RT
            Mar 2010: LHS (Embryonal Carcinoma)
            Sep 2010: Relapse & 3 x BEP
            Mar 2015: Five years "nut free"
            http://doublezeroami.blogspot.com

            Comment


            • #7
              Sorry to hear about the relapse. It is one of the strangest relapses I've ever seen (mesenteric lymph nodes). BEP will certainly kill it for good!!!
              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


              • #8
                Hi Joe

                That really sucks man, but you sound like you're ready for the next step. Chemo isn't fun but it's bearable. We're all here to ***** and moan right along side of you! Good call on the port, I opted for it and glad I did, taking blood labs and getting the infusions are quick and painless. Have you had a chance to sperm bank? If you're considering it, have a semen analysis done before banking to make sure cancer didn't stunt your sperm growth. I only found out after spending my money that I was azoospermic and would need a biopsy to find any viable sperm. All of this needs to be done beforehand, once you start chemo your sperm count is gonzo until after treatment is complete and then who knows what your production will be afterward.

                Best of Luck,
                Daniel

                Comment


                • #9
                  Sorry to hear that.
                  Add oil Joe
                  30/12/16 2.5cm on right testis, 6mm on left testis.( B-HCG 0.34 <2,AFP 4.5 <7)

                  24/01/17 Right I/O
                  (Pure embryonal carcinoma, no lymphovascular, no invasion of tunica albuginea, rate testis, epididymis, spermatic cord. )

                  14/02/17 AFP 2<7, 6mm on left testis
                  17/02/17 Survelliance
                  06/03/17 CT scan (Visible lymph nodes in the mediastinum . probable benign reactive appearance)

                  28/07/17 AFP 35 (normal 7), relapsed confirmed
                  04/08/17 CT scan (new metastatic para-aortic lymph node 1.6cm AP1.5cm)
                  10/08/17 Start 3 BEP, AFP201 (normal 7)
                  06/10/17 End of 3 BEP, AFP3 (normal7)
                  17/10/17 CT scan
                  27/10/17 Prev left para-aortic lymph node not seen. AFP2(normal 7), B-HCG <2, LDH 208( normal 118-220)

                  Comment


                  • #10
                    Starting 3x bep tomorrow morning. Anything I should prepare for or know?
                    11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

                    Comment


                    • #11
                      Stay on top of the constipation. Take Docusate and Senna daily on day 1.
                      Glad you have the port. That's important.
                      Drink a lot. They will monitor your urine output.
                      I would consider "cool gloves" to try to decrease nerve damage from Cisplatin. It may make a difference. It may also decrease the Bleomycin getting to the hands. The #1 side effect from Bleomycin is Raynaud's.
                      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


                      • #12
                        Honestly the biggest concern I have is lung toxicity from the bleomycin. I have moderate (controlled) asthma. Should I be worried?
                        11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

                        Comment


                        • #13
                          Hey Joe, I'm sorry to see that you're going to need chemo, especially as a fellow robotic-RPLND patient. I love your attitude and I hope your chemo experience is an easy one.

                          I haven't needed chemo so far, so I shouldn't be the one to chime in here really. But... when I was asking several doctors about BEP, my previous issues with asthma was something I asked about. The oncologists each said that they didn't expect any connection between asthma and Bleo-toxicity. That said, you should insist that your oncologist keeps a close eye on lung function. Remember, if it's not looking like the Bleo is working out, you can sometimes switch over to the EPx4 regimen.
                          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


                          • #14
                            Thats how I have been planning on managing it formsure. Glad someone else shares the same thought process. Good to hear about the lack of connection between bleo and asthma!
                            11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

                            Comment


                            • #15
                              Well, I don't want to mislead you. I don't actually know that there's no connection. I just know that 3 oncologists that I talked to didn't think that a history of asthma changed anything. As someone who knows the feeling of asthma troubles, I really hope you don't have any trouble with that. You rock and I'm sure you'll rock this.
                              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

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