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  • #16
    They have finally cleared me to start my 3rd cycle (after about 15 hours of delay) with some gentle pushing...and we are now starting everything to be about an effective 24 hour delay in completion. Dr E. said this won't be a problem...

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    • #17
      Update: Completed 4th BEP cycle yesterday.
      Prior to starting my 4th cycle on Memorial Day my markers were:
      BHCG=3.0
      AFP=1.4
      LDH=234
      My CT scan is scheduled for July 7th and I've initiated a request for a second opinion through the VA to Dr. Einhorn. Currently the VA has recommended a second opinion on the proposal of performing a Left I/O as precaution despite finding nothing in either Testicle via Ultrasound/MRI/CT/PET. The assumption is that because it was in my Left lymph nodes, it began there and probable source that we should remove soon after chemo completion.

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      • #18
        Glad to hear that chemotherapy is over for you. I would definitely reach out to Dr. Einhorn. Perhaps a repeat scrotal ultrasound would be worth doing to see if there has been any changes. Extragonadal germ cell cancer is certainly a possibility but it is a bit rare. Perhaps having a more experienced center look at the ultrasounds would help too. Although, I would think the Navy has seen their fair share of TC cases given the age of those serving. Definitely just have them give him a shout and see what he thinks the next steps need to be as far as the orchiectomy and best of luck on the CT results.

        Mike
        Oct. 2005 felt lump but waited over 7 months.
        06.15.06 "You have Cancer"
        06.26.06 Left I/O
        06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
        06.30.06 It's Official - Stage I Seminoma
        Surveillance...
        Founded the Testicular Cancer Society
        6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

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        • #19
          DRIVEN~ Congrats on finishing chemo & for your markers normalizing. Keep us updated, especially after our Ct Scan on July7th.
          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.

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          • #20
            Originally posted by driven2tri24 View Post
            Currently the VA has recommended a second opinion on the proposal of performing a Left I/O as precaution despite finding nothing in either Testicle via Ultrasound/MRI/CT/PET. The assumption is that because it was in my Left lymph nodes, it began there and probable source that we should remove soon after chemo completion.
            That assumption may be flawed. I would want an expert opinion before taking off a testicle without positive proof it needed to come out.TC can originate in areas outside of the testicles.

            Dave

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

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            • #21
              Update:
              Met Dr. E in Mid July shortly after CT scan on the 7th and have had his advice at my disposal for last few months. He recommended an RPLND but no I/O to the VA and they listened.
              Here is where I am currently...
              8/17/17 BHCG 1.0 & AFP 2.8
              8/21/17 RPLND performed removal of 10 lymph nodes and "scarred"plumbing to left testicle.
              8/28/17 BHCG up to 3.0 (AFP not taken)
              9/5/17 pathology report of lymph nodes and other material removed came back negative for teratoma or living cancer.

              -Currently scheduled
              9/14CT scan of chest to observe 3mm nodule in lung and blood draw for BHCG/AFP re-test
              9/15 for staple removal from abdomen...

              Overall I am recovering well from surgery and although concerned about slight rise in BHCG, am happy that all material taken during RPLND was dead...

              Anyones toughts on BHCG?? How significant is a rise from < 1.0 post chemo to 3.0 post RPLND??

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              • #22
                Good news on the RPLND result! What is the lab's range for normal bHCG? Each is slightly different based on their respective labs and handling procedure. I don't think a 3.0 is anything to be concerned about unless it continues to rise.
                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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                • #23
                  Accessed my medical records today and found out the previously reported 3.0 value was a mistake by doctor reading it to me. The 3.0 was the normal range and the result of my test was actually <1.0 on 8/28.
                  They took my markers again on 9/15 following my CT scan on 14th because they found a NEW 6mm nodule in my other lung(although the 3mm Met remained same size as well as all other resolved Mets). The markers were again BHCG <1.0, AFP 2.1, LDH 190....so a bit confused what this 6mm nodule is....
                  Despite markers being good.....They also want to do another MRI of my Head and CT scan of abdomen/chest on Oct 14th & 15th. The MRI is due to stabbing pains I'm having between my left temple and eye and they are concerned it could be something related. The CT is to look for other possible Mets post chemo...

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                  • #24
                    DRIVEN~ Wow! You have been through some stuff- glad no live cancer was found. Please update us after next MRI & CT Scan next month. Hope you are healing okay.
                    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


                    • #25
                      Good luck! Stress can induce some things, see if you can get yourself doing something to relieve stress. Books, exercising, walking, etc whatever works for you.
                      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!

                      Comment


                      • #26
                        Spoke with Dr. E and feel a lot better. Considering the markers are still absent I'm definitely not too convinced it's new cancer but I definitely would like to know what it is because it's kind of the "wrench" in my equation of success at this point....

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                        • #27
                          Glad Dr. E was reasuring. Anxiety really impacts those with TC, and caregivers! Don't forget to update us next month.
                          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.

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                          • #28
                            VA called to schedule appointment for Thoracic Surgeon to discuss removing the 3mm & the new 6mm nodules. They want to go in and remove them/identify them with patholgy..
                            They also want a CT of my abdomen still and MRI of head.

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                            • #29
                              CT is set for 9/25 & Surgeon Consultation 9/26...MRI isn't until Oct 17.

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                              • #30
                                Nxet week! Wishing you the best. Update when you are able.
                                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

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