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  • Markers nearly doubled since Monday!!!! Help!

    My son was diagnosed with 100% embryonal Carcinoma and had a radical orchiectomy. Before surgery all his markers were negative and there was a clear tumor margin. 6 weeks after diagnosis we decided to do surveillance, but the dr drew his markers again just in case. The next day (this Tuesday) she called and said they were elevated. His values Monday were AFP 109.2, hcg 85.4. She scheduled a bunch more tests and we are in the process of getting them done. She redrew his markers yesterday and they are now AFP 154, Hcg 143.2. His CTs after surgery were fine. What is going on? Can it be that it's just in the lymph nodes? He had a brain MRI yesterday and a bone scan today. Repeating CTs today as well. Someone please talk to me about markers and tumor burden. I can't find anything on the internet. We don't see the doctor again until next Thursday!

  • #2
    He is stage 1s. He will require 3 x BEP or 4 x EP. It is likely in his lymph nodes in the retroperitoneum. I've seen many cases where the markers start to increase quickly a few weeks after orchiectomy. Good thing is, he'll very likely be cured with the chemotherapy.
    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

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    • #3
      I have to agree with RJKD. Rising markers at this point indicate that the tumor is not gone yet, even if the CT does not show it. Chemo is the best option to kill the cancer. I know it sucks, but that is the best option for a cure.

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

      Comment


      • #4
        I have to agree with RJKD. Rising markers at this point indicate that the tumor is not gone yet, even if the CT does not show it. Chemo is the best option to kill the cancer. I know it sucks, but that is the best option for a cure.

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

        Comment


        • #5
          Not sure if this is common, but it did happen to me. My markers almost doubled every 4-5 days after orchiectomy. Scary, but I did the 4xEP and had a PC-RPLND and am doing well now. Almost one year since my first diagnosis
          Dx March 21 2016
          Right Orchiectomy march 25 2016
          60% embryonal 35% yolk sac 5% seminoma
          positive node on CT 1.4X1.3cm stage 2a markers rising, HCG 2300 AFP 25
          Started 4xEP april 2016
          Finished chemo July 2016, markers normal, complete radiographic remission
          RPLND MSKCC Aug 2016, removed something like 60 nodes all negative but one with teratoma
          Surveillance

          Comment


          • #6
            Hey,

            Chemo will be needed, as said, either BEP x 3 or EP x 4.

            100 % EC typically spreads quickly, usually in the lymph nodes.

            But 100 % EC is very sensible to chemotherapy and we can expect about 90 % complete response with chemotherapy only.

            Good luck with chemo,

            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


            • #7
              Brain and bone both clear, but it is in mediastinal lymph nodes and the right lobe of his lungs toward the midline. 6 weeks ago his CTs were clear. He gets his port Friday. Starts treatment on Monday. The tumor board will review his case Wednesday. What changes should I expect, if any? I mean as far as his treatment. Thought we were dealing with IA then IS, now it looks like IIIA! He hasn't been scared up until now. I don't know if it's because of the minion of it being in his lungs or because it's getting closer to time for treatment...

              Comment


              • #8
                Originally posted by jonahsmom View Post
                Brain and bone both clear, but it is in mediastinal lymph nodes and the right lobe of his lungs toward the midline. 6 weeks ago his CTs were clear. He gets his port Friday. Starts treatment on Monday. The tumor board will review his case Wednesday. What changes should I expect, if any? I mean as far as his treatment. Thought we were dealing with IA then IS, now it looks like IIIA! He hasn't been scared up until now. I don't know if it's because of the minion of it being in his lungs or because it's getting closer to time for treatment...

                Very similar to my staging, I went from 1A, to 1S, to 2B/3B in about 6 weeks. First CT was clear, then my second 5 weeks later showed 1 abdo node.

                Don't be too alarmed, it does happen. It's quite hard to take as your head gets set on one thing then it changes, but just focus on moving forward. Will he be getting 3xBEP? If so it should hopefully sort it out. Not sure if you've done it or not, but sperm banking and lung tests etc should be done also.
                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


                • #9
                  Originally posted by jonahsmom View Post
                  Brain and bone both clear, but it is in mediastinal lymph nodes and the right lobe of his lungs toward the midline. 6 weeks ago his CTs were clear. He gets his port Friday. Starts treatment on Monday. The tumor board will review his case Wednesday. What changes should I expect, if any? I mean as far as his treatment. Thought we were dealing with IA then IS, now it looks like IIIA! He hasn't been scared up until now. I don't know if it's because of the minion of it being in his lungs or because it's getting closer to time for treatment...

                  This is similar to my scenario as well. I was stage IB at orchiectomy, then was no evidence of disease, then was stage 3A (nodules in lungs) on my first surveillance bloodwork/scans two months later. It's scary, but he will get through this.

                  Comment


                  • #10
                    Originally posted by Nish115 View Post


                    Very similar to my staging, I went from 1A, to 1S, to 2B/3B in about 6 weeks. First CT was clear, then my second 5 weeks later showed 1 abdo node.

                    Don't be too alarmed, it does happen. It's quite hard to take as your head gets set on one thing then it changes, but just focus on moving forward. Will he be getting 3xBEP? If so it should hopefully sort it out. Not sure if you've done it or not, but sperm banking and lung tests etc should be done also.

                    It was discovered at stage 1. So his survival rate is right in line with those that caught it at stage 1, even though it is stage III now. Doctors regularly do surveillance on stage 1 patients, knowing that a significant proportion of them will relapse to stage 2 or 3 and require treatment, all the while knowing that their survival odds do not change with this strategy. The good thing is that this relapse was caught super early and he'll beat this.
                    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


                    • #11
                      JONAHSMOM: Take a deep breath! Even now your son has a really good chance.
                      17 year old son Grant dx 12/21/16
                      pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                      pre/o CT Scan 12/22/16 normal
                      r/o 12/22/16
                      Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                      PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                      -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                      2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                      BEP x 3 1/27/17
                      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


                      • #12
                        The tumor board didn't meet because too many doctors were out on spring break. They will review his case next Wednesday. We banked semen and he had his pulmonary function test today. He gets his port Monday and will be admitted after to start chemo. He is doing BEPx3. They said he will get fluids Monday, BEP Tuesday, EP Wednesday and Thursday, fluids on Friday, then home on Saturday, hopefully. I was upset about them canceling tumor board, but what would be the point if they weren't there to review his case? Thanks for all your replies! I'm sure you'll be hearing from me again!

                        Comment


                        • #13
                          Originally posted by jonahsmom View Post
                          The tumor board didn't meet because too many doctors were out on spring break. They will review his case next Wednesday. We banked semen and he had his pulmonary function test today. He gets his port Monday and will be admitted after to start chemo. He is doing BEPx3. They said he will get fluids Monday, BEP Tuesday, EP Wednesday and Thursday, fluids on Friday, then home on Saturday, hopefully. I was upset about them canceling tumor board, but what would be the point if they weren't there to review his case? Thanks for all your replies! I'm sure you'll be hearing from me again!

                          Like I said, your son's situation sounds very similar to what I went through. 3xBEP is tough (to say the least), but it will likely take care of this cancer for good.

                          Comment


                          • #14
                            Originally posted by jonahsmom View Post
                            The tumor board didn't meet because too many doctors were out on spring break. They will review his case next Wednesday. We banked semen and he had his pulmonary function test today. He gets his port Monday and will be admitted after to start chemo. He is doing BEPx3. They said he will get fluids Monday, BEP Tuesday, EP Wednesday and Thursday, fluids on Friday, then home on Saturday, hopefully. I was upset about them canceling tumor board, but what would be the point if they weren't there to review his case? Thanks for all your replies! I'm sure you'll be hearing from me again!
                            Are you in Europe? Typically in the USA chemo is done over 5 days, but in Europe it seems to be common to do it over 3 days.
                            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!
                            9/18/2017 all clears up to this date!

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