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Hi! 4xBEP done but lymph nodes didn't shrink

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  • #16
    Hey Mate, glad to hear you're okay. 1 down and 1 to go!

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    • #17
      It's been a few months since I posted but thought it was worthwhile to update on my situation because I have a significant thank you for this board too.

      I had an RPLND in June and after five hours, they decided to discontinue due to a couple of severe bleeds. They told me my teratoma encased too many veins and was inoperable. My condition was terminal.

      I spent a month thinking about dying, planning for dying, and trying to avoid thinking about dying!

      But having had the recommendation from Mike to contact a testicular cancer expert in Australia rather than just use my local oncologist I thought I should do that myself this time (I had previously requested this via my own oncologist) - nothing to lose, right.

      To my surprise and despite living in a different state 800+km away they got back to me within a week and had appointments for me in two weeks, and another week after that a surgeon was telling me he thought it was worth attempting my RPLND again due to having greater experience on these particularly difficult ones.

      By this stage my teratoma had grown throughout my chest, abdomen and pelvis. It was hitting my duodenum pretty hard leaving me able to eat only the smallest amounts (I vomited from overeating after a normal bowl of soup), had given me an almost pregnant looking belly, and caused retroejaculation.

      That RPLND was a week ago (two and a half months since the first one) and to my total wonder, I've been told they've removed all my teratoma and have every chance of a long life ahead.

      To me this is the perfect example of the importance of seeking out the best, most experienced people when it comes to the complex cases of testicular cancer. I still can't believe one group of expert surgeons can remove 0% of my tumour and another can remove 100%.

      To Mike, thank you, I may not have sought a second opinion - and got a second chance at life - without your recommendations.

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      • #18
        That's amazing news! I am so happy for you! Here's to many many more years for you and all us survivors!
        3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT scan clear, AFP was 19. 8/16/17 AFP drops to 10. Doctor pleased ALL CLEAR!

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        • #19
          That is amazing, congratulations!!! What expert did you reach out to?

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          • #20
            And a huge thanks to Mike - good on you for being such a supporter around here!!

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            • #21
              Great to hear!!! I think this forum has helped many folks and likely saved a number of lives because of recommendations and support. It is a fantastic resource.
              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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              • #22
                Thanks for the responses! It's still surreal to have such a change in fortune.

                JoeTheAstronaut, it was Guy Toner at the Peter Mac in Melbourne, Australia and he referred me to surgeon Jeremy Goad at St Vincent's who has saved my life.

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                • #23
                  AUSSIEDAN~ Wow! So grateful you sought out TC EXPERTS. Are you healing okay? Post Chemo RPNLD is not a simple operationl and you had it twice, and the other surgery on your neck!!!
                  Wishing you the best as you continue to recover.
                  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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                  • #24
                    Great to hear!!!
                    6/2016 - Right I/O; 35% Yolk Sac, 35% Teratoma, 10%EC, 20% Seminoma with LVI; AFP elevated; CT scan clean
                    7/2016 - markers normal; confirmed Stage 1B; surveillance
                    8/2016 - markers normal
                    9/2016 - markers normal
                    10/2016 - markers normal; CT scan revealed 3mm lung nodule
                    12/2016 - markers normal
                    2/2017- markers normal; CT scan confirmed lung nodule grew to 14mm; confirmed relapse
                    3/2017 - 3xBEP
                    5/2017 - finished 3xBEP
                    6/2017 - markers normal; no size reduction in lung nodule
                    8/2017 - VATS and markers normal; continue to surveillance

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                    • #25
                      This is such awesome news to hear. I am so sorry I am just now getting to the post and after wiping a few happy tears am getting the chance to reply. I am so happy for you and so glad that you reached out to Dr Toner. I had no idea that they told you with the first RPLND that there was nothing more that they could do. There are only a few surgeons that I would accept that answer from and in fact have heard an expert say that if you hear that kind of answer about an RPLND to find a more experienced surgeon until you find the most experienced surgeon in the world. Again, I am so ecstatic for you.

                      You may find this interesting, it was published in the last few weeks; Practice Makes Perfect: The Rest of the Story in Testicular Cancer as a Model Curable Neoplasm http://ascopubs.org/doi/pdf/10.1200/JCO.2017.73.4723 and Dr. Grimison (the other doctor I mentioned to you is one of the co-authors).

                      I am going to sleep a happy man tonight and am so glad that you reached out and also updated us.

                      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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