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  • New guy..

    Hi everyone! Navy guy here y diagnosed 3/24/17 with stage III-a TC (non-seminoma mixed germ cell) identified as embryional and choriocarcinoma). I'm currently at the VA Hosp. starting my 3rd cycle of BEP. Had one side of lymph nodes enlarged and two tumors in the 3-4cm range along spine/aorta and down to bladder on first CT/PET. Testicles were clear Ultrasound/MRI/CT so no I/O. In < 2 weeks waiting for biopsy from VA & Hopkins it spread from just one side of my lymph nodes to both and my lungs. Markers prior to 1st cycle were HCG:103,980, LDH:435, AFP:19.9..
    Going into my 2nd cycle the HCG number dropped to 148. The VA doctors seem willing to to talk to others so I've left a message trying to setup a consult with Dr. Einhorn to ensure this is the right approach, as some say 3xBEP and they want to do 4XBEP then RPLND...

    Any advice is appreciated...

  • #2
    DRIVEHN~So sorry to welcome you here. Yes, consulting with Dr. E is a good decision in your case. Both Embroynal and Chorio are aggressive. the good thing is the drop in HCG at start of 2nd cycle. Have they done tumor markers yet for this cycle 3? Keep us updated.
    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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    • #3
      Starting 3rd cycle on Monday(5 day inpatient)...they may do markers then.

      Comment


      • #4
        Originally posted by Trekga View Post
        DRIVEHN~So sorry to welcome you here. Yes, consulting with Dr. E is a good decision in your case. Both Embroynal and Chorio are aggressive. the good thing is the drop in HCG at start of 2nd cycle. Have they done tumor markers yet for this cycle 3? Keep us updated.

        Has anyone out there heard of 4 cycles of BEP being beneficial over just 3 cycles before doing Radiation and RPLND???


        Some other symptoms which are growing more prominent with each cycle.....I'm having and wondering if associated with BEP or the cancer itself:
        1. Bloody sinuses when blowing nose.
        2. Cough fluid every 15 mins or so possibly sinus drain...
        3. Tendon weakness in knee all of sudden.
        4. Night sweats about every 2-3 hrs
        5. Wake up with headaches.
        6. Fasting Blood sugar(type 2 diabetes) has remained elevated following beginning of 2nd cycle despite double dosage of medication, now facing need for Insulin.

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        • #5
          DRIVEN~ Radiation is not use in nonseminoma. The decision to do chemo is usually made for some males by their staging. My son had 3xBEP, finsihed end of March, and post chemo his lymph nodes are still over 2cm so Dr. E says RNPLD. My son will have the surgery on Monday, 5/8. My son did have bloody nose, both bleeds and blood coming out starting end of 2nd cycle. None of the other syptoms you mention. Fatigue during cycle 3, and some nausea/vomitting every cycle despite meds.
          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


          • #6
            Thanks that explains the bloody nose. The amount of cycles depends upon size of tumors?

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            • #7
              Originally posted by driven2tri24 View Post
              Thanks that explains the bloody nose. The amount of cycles depends upon size of tumors?
              Actually it's determined by stage, with tumor size being part of staging, I believe. Stage IIIA should get3x, stage IIIB 4x. Based on your hcg i think you are actually stage IIIb or c, if I'm interpreting the NCCN guidelines correctly.

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

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              • #8
                I agree I believe I'm actually a stage 3c as well and that makes sense for the 4X. Is it correct to wait to do RPLND until after chemo is complete or in middle of it?

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                • #9
                  You are 3C according to guidelines so 4xBEP is correct.

                  RPLND after chemo if required. They should do another scan beforehand to see how the chemo has worked, with an RPLND (I believe) 6-8 weeks after chemo to allow your body to recover. But, not entirely sure on time frames so might be longer or shorter.
                  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


                  • #10
                    Thanks that explains a lot. I'm now In touch with Dr. E and he is simply awesome! He has confirmed I'm on right track provided some key info to pass onto my Oncology team and made himself available for consultation with my medical team.

                    He is an absolute Saint in my mind and I couldn't ask for someone above helping me more than the help this forum and he have been for me in the last couple of days since discovering this place...

                    Thank you guys!

                    Comment


                    • #11
                      You will only need an RPLND after chemo, if your enlarged nodes have not shrunk to under 1CM within a reasonable period post chemo.

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

                      Comment


                      • #12
                        Makes sense Dave. Does that also apply for any tumors or just lymph nodes?

                        Comment


                        • #13
                          Awaiting start of 3rd cycle and they are delaying at minimum 12 hrs to wait for CT scan results of possible sinus abscess or infection. As a precaution they are putting me on Augmentin...
                          Is any of this a problem?

                          BTW my markers have dropped
                          Prior to 3rd cycle start- Today 5/08/17
                          bHCG= 8
                          AFP= 3.1
                          LDH= 232

                          Beginning of 2nd cycle(4/17/17):
                          BHCG 148
                          AFP 5.2
                          LDH 195

                          Beginning of 1st cycle 3/2517
                          Hcg 103,980
                          AFP 19.9
                          LDH 435

                          Any advice??

                          Comment


                          • #14
                            Generally speaking, delays in BEP should be avoided as the risk from the delay ( in terms of efficacy of the treatment) is greater than the risk of pushing on. That said a 12 hour delay is probably not a problem, but I can't imagine what they think is being gained, either. Personally, I would push for taking the antibiotic and going forward with treatment as scheduled.

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

                            Comment


                            • #15
                              I am glad that Dr. Einhorn is available to your team and I hope that they use the resource. The decision to use BEPx3 or BEPx4 is based on your risk classification for advanced disease, which takes into consideration the primary tumor location, location of any metastasis and tumor markers. It is my understanding that BEPx4 would be appropriate for you given your beta-hCG levels prior to the start of cycle one and I am assuming Dr. Einhorn agreed?

                              Delaying chemotherapy for a few hours or a day or so to assess the sinus situation seems reasonable as there are some sinus infections/abscesses that can be quite serious and perhaps influence if the next round of chemo should be delayed. However, I would ask my team to run things by Dr. Einhorn if there were going to delay more than the 12 hours.

                              Most experts say that any residual masses (abdominal lymphnodes) 1 cm or larger after chemotherapy for nonseminoma will need an RPLND if the markers are normal. Others do the RPLND for smaller nodes. You will have to check with your team and again with Dr. Einhorn when the time comes. The surgery would be after chemotherapy is finished. Any residual lung masses would be worked up differently.

                              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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