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  • Another New One Here

    Hey everyone. Another new one here. I got diagnosed with stage 3c testicular cancer, a mix of seminoma/choriocarcinoma back in november. which had metastasized to my lungs, neck lymph node, and at one point, brain. Luckily there were able to clear out my brain with chemo, since it was just starting to spread there.

    First off, i'd like to say thanks. I've been lurking here since this started, but this place has given me a lot of information and hope. Much like a lot of the other member's it's been an emotional roller coaster for me. With the help of family and friends, i've managed to make it this far.

    It's been a long ride of hell. First with the usual orchie of my right testicle, then 4 rounds of BEP which brought my tumor markers (hcg) down from 200,000 to 38. The treatment reduced the size of all my masses, and cleared out my brain, but it still isn't enough yet. My oncologist went forward and now i'm doing second line treatment with TIP for 4 additional cycles. I've just completed the 2nd cycle a week ago, and my markers are now at 13. Her plan is to finish these cycles of chemo, then remove any remaining masses with surgery.

    I was wondering if anyone had Dr Einhorns email address. I've been wanting to get a second opinion, just to make sure the treatment i'm undergoing is the right choice. I know he's an expert, especially when dealing with choriocarcinoma. Any help and additional information would be greatly appreciated.






    Last edited by piccolo909; 05-07-18, 11:17 PM.

  • #2
    leinhorn@iu.edu

    That first letter is an L. Is your tumor marker actually hCG and not LDH? Second opinions are a good idea!

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    • #3
      Thanks for the fast response!

      Yeah, i keep getting those mixed up. The marker is hCG.

      Comment


      • #4
        Sounds like you have had quite the journey! Let us know what the second opinion says!
        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!
        3/29/2018 all clears up to this date!

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        • #5
          You should definitely consult with Dr Einhorn, and he'll in particular want to know about marker trends. He might want you to go to high-dose chemotherapy rather than finishing the TIPx4. He would know best! Definitely get in touch!
          Young Adult Cancer Survivorship by Steve Pake
          April is Testicular Cancer Awareness Month!
          www.stevepake.com
          Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
          My Survivorship Thread | All of my Blogs
          C
          ONTACT ME ANYTIME!

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          • #6
            Dr. Einhorn got back to me pretty quick! He seems like a humble, nice guy from what i saw in the email.

            His response surprised me. I expected him to say something about high dose chemo, but he said that i shouldn't even be doing TIP, because my markers have not risen. Instead he would have done weekly blood test to see if my HCG normalized and then take it from there. I hope that my oncologist is not going overboard, because the side effects from TIP are pretty brutal, but there's not much i can do now because i'm already halfway into it. Hopefully this will lead to a cure though!

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            • #7
              Originally posted by piccolo909 View Post
              but there's not much i can do now because i'm already halfway into it.
              Actually, you could stop therapy to avoid additional side effects, but I would want additional bloodwork showing a continued decrease in markers before doing so.

              Dave

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

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