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  • It takes awhile post chemo to recover energy. Not a medical doctor, so no idea when they intervene w/hemoglobin. I know again, all labs are out of whack post chemo for awhile. Is there a plan to wean off the Steroid? Walking is good, I think that helped my son the most post chemo & even during.
    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


    • I honestly don't recall how long. I think I started trying to hike around 3-4 weeks, but it took a while to get back to what I used to be able to do.Eventually, I surpassed my previous abilities, though, so it does happen, just start out doing whatever you can manage & build from there.

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

      Comment


      • Full stamina and physical activity without being winded? I would say 3+ months for me.
        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!
        4/15/19: all clears up to this date!

        Comment


        • Hello

          It seems like I relapsed again....
          I completed BEP X 3 on novermeber 21-2018 because there were two retroperitoneal lymph nodes 39mm and 20mm near the cava. I had my first abdomen CT-Scan after chemo on december 19-2018 which showed the lymp node was reduced to 15mm, and before chemo the lymph node located near the cava and right ureter was 39mm. Then in January 14-2018 another urology CT-Scan with no contrast showed the node was 12mm. On April 30-2019 I had an abdomen RMI and it is showing the node near the superior cava increased its size to 43x40mm which is contacting the superior cava and psoas muscle and compressing the right ureter, and there is another node below the aortic bifurcation and adjacent to right external iliac vessels which measures 27x19mm. The chemo was completed as scheduled and I only missed one Bleo because of an urinary infection

          Tumor markers show BHCG increased and LDH slightly elevated I think....
          May 14

          BHCG 3.34 It has to be below 2.7

          LDH 264 It has to be below 225

          AFP 1.0 Normal, it has to be belo 11



          May 23

          BHCG 8.49

          LDH 229

          AFP 0.9



          June 7

          BHCG 16.11

          LDH 303

          AFP 0.9
          I'm 40 years old Pathology Pure 100% seminoma no invasion Right I/O March 2017

          I hope my english is clear since it's not my first language.

          Appreciate your help and comments since I'm so concerned about this
          Last edited by mauroeg7; 06-15-19, 02:47 PM.
          39 year old diagnosed Right Mass as per U/S
          Pre/o CT-Scan Chest Xray all Clear march 24 2017
          Right I/O April 8th 2017
          Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
          Tumor Markers never elevated
          Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
          May 11 BHCG Mild elevated 3.1 Reference Value 2.7
          May 25 2018 Chest CT-Scan Clear
          May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

          Comment


          • Bummer mauroeg, I sure don't like they way those markers are moving, what does your doc have to say?
            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP

            Comment


            • Originally posted by Davepet View Post
              Bummer mauroeg, I sure don't like they way those markers are moving, what does your doc have to say?
              Docs say there are two ways Salvage Chemo or RPLND. But, I'm not sure whats best at this point. One urologist proposed to do the Full open RPLND Surgery on wednesday June19 and then if it's necessary salvage chemo after RPLND. Another urologist said that salvage chemo should be done first but that I still might need RPLND surgery after salvage chemo. My oncologist with the first tumor markers thought that RPLND should be done, but after viewing last tumor markers is thinking about salvage chemo, another oncologist said surgery should be done now..
              Last edited by mauroeg7; 06-17-19, 09:27 AM.
              39 year old diagnosed Right Mass as per U/S
              Pre/o CT-Scan Chest Xray all Clear march 24 2017
              Right I/O April 8th 2017
              Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
              Tumor Markers never elevated
              Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
              May 11 BHCG Mild elevated 3.1 Reference Value 2.7
              May 25 2018 Chest CT-Scan Clear
              May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

              Comment


              • I'm sorry to hear that also mauroeg7. Yes this is definitely a case to enlist in expert help. They will have much more experience in treating the more rare relapse cases.
                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!
                4/15/19: all clears up to this date!

                Comment


                • Originally posted by mauroeg7 View Post

                  Docs say there are two ways Salvage Chemo or RPLND. But, I'm not sure whats best at this point. One urologist proposed to do the Full open RPLND Surgery on wednesday June19 and then if it's necessary salvage chemo after RPLND. Another urologist said that salvage chemo should be done first but that I still might need RPLND surgery after salvage chemo. My oncologist with the first tumor markers thought that RPLND should be done, but after viewing last tumor markers is thinking about salvage chemo, another oncologist said surgery should be done now..

                  Mauro, I'm so sorry for your situation. Relapsing after BEP is a serious thing. As you didn't have elevated markers before, and now you do, is your tumor still clasified as seminoma? Did they check other testicle for primary tumor? If it is not second primary, it can be a situation that your first primary was not a pure seminoma, but seminoma with small percentage of non seminoma that was missed in PHD report. This is deffinetely a case for real experts.
                  45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
                  Waiting...

                  Comment


                  • Originally posted by biwi View Post
                    I'm sorry to hear that also mauroeg7. Yes this is definitely a case to enlist in expert help. They will have much more experience in treating the more rare relapse cases.
                    I ive in Colombia and Im trying to get the best hands on this here. I have an appointment tomorrow with the urologist who proposed to do the full open RPLND on wednesday June 19. I have to say either do the surgery or I will not do it. I have to give him an answer.
                    39 year old diagnosed Right Mass as per U/S
                    Pre/o CT-Scan Chest Xray all Clear march 24 2017
                    Right I/O April 8th 2017
                    Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
                    Tumor Markers never elevated
                    Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
                    May 11 BHCG Mild elevated 3.1 Reference Value 2.7
                    May 25 2018 Chest CT-Scan Clear
                    May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

                    Comment


                    • Originally posted by Harxxony View Post


                      Mauro, I'm so sorry for your situation. Relapsing after BEP is a serious thing. As you didn't have elevated markers before, and now you do, is your tumor still clasified as seminoma? Did they check other testicle for primary tumor? If it is not second primary, it can be a situation that your first primary was not a pure seminoma, but seminoma with small percentage of non seminoma that was missed in PHD report. This is deffinetely a case for real experts.
                      It's still clasified as Seminoma since thats what the pathology report said. The urologist who did my orchiectomy said he will ask the pathologist to review again the pathology plates or something like that. Two of my urologists have physically checked my left testicle and both said it's fine.
                      39 year old diagnosed Right Mass as per U/S
                      Pre/o CT-Scan Chest Xray all Clear march 24 2017
                      Right I/O April 8th 2017
                      Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
                      Tumor Markers never elevated
                      Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
                      May 11 BHCG Mild elevated 3.1 Reference Value 2.7
                      May 25 2018 Chest CT-Scan Clear
                      May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

                      Comment


                      • Originally posted by mauroeg7 View Post

                        It's still clasified as Seminoma since thats what the pathology report said. The urologist who did my orchiectomy said he will ask the pathologist to review again the pathology plates or something like that. Two of my urologists have physically checked my left testicle and both said it's fine.
                        They didn't do ultrasound on remaining testicle? They should, to rule out second primary.
                        Anyway, if it's not a second primary but relapse, taking in mind that you're from the country that has low TC rate, your best chance is to get an opinion from someone like Dr. Einhorn or other world expert. If you can go there, go. If not, I'd personaly follow an opinion of an experienced local oncologist, rather than urologist, it seems that urologists have very limited experience with rare reccurence cases.
                        45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
                        Waiting...

                        Comment


                        • Originally posted by Harxxony View Post

                          They didn't do ultrasound on remaining testicle? They should, to rule out second primary.
                          Anyway, if it's not a second primary but relapse, taking in mind that you're from the country that has low TC rate, your best chance is to get an opinion from someone like Dr. Einhorn or other world expert. If you can go there, go. If not, I'd personaly follow an opinion of an experienced local oncologist, rather than urologist, it seems that urologists have very limited experience with rare reccurence cases.
                          Hello
                          I haven't had an ultrasound of my left testicle this year. I already emailed Dr.Einhorn and he is leaning towards salvage second-line chemo
                          Interestingly Dr.Einhorn didnt mention the ultrasound of the left testicle but I'm going to ask him. I'm also seeing an oncologist here. He is great oncologist, he is the one who ordered my BEPx3 but, I'm not sure if he has treated before a Seminoma relapse after BEPx3
                          I live in Colombia and I would like to travel to Indiana and be treated there but I don't have the resources..
                          Last edited by mauroeg7; 06-17-19, 06:27 PM.
                          39 year old diagnosed Right Mass as per U/S
                          Pre/o CT-Scan Chest Xray all Clear march 24 2017
                          Right I/O April 8th 2017
                          Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
                          Tumor Markers never elevated
                          Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
                          May 11 BHCG Mild elevated 3.1 Reference Value 2.7
                          May 25 2018 Chest CT-Scan Clear
                          May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

                          Comment


                          • Not everyone can get to Indiana, but everyone can follow Doc E's advice, I suggest you do so...
                            Jan, 1975: Right I/O, followed by RPLND
                            Dec, 2009: Left I/O, followed by 3xBEP

                            Comment


                            • Originally posted by Davepet View Post
                              Not everyone can get to Indiana, but everyone can follow Doc E's advice, I suggest you do so...
                              Hello Dave I know you and many here are a very educated TC Survivors. So may I ask whats usually done when there is Seminoma relapse after BEPx3 chemo.?


                              39 year old diagnosed Right Mass as per U/S
                              Pre/o CT-Scan Chest Xray all Clear march 24 2017
                              Right I/O April 8th 2017
                              Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
                              Tumor Markers never elevated
                              Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
                              May 11 BHCG Mild elevated 3.1 Reference Value 2.7
                              May 25 2018 Chest CT-Scan Clear
                              May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

                              Comment


                              • Originally posted by mauroeg7 View Post

                                Hello Dave I know you and many here are a very educated TC Survivors. So may I ask whats usually done when there is Seminoma relapse after BEPx3 chemo.?

                                You relapsed how long after BEPx3?

                                Comment

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