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  • New Member Introduction

    Hello everyone,

    I'm Colin Egan, a 22 year old posting to meet other TC/ patients/survivors. I was initially diagnosed with stage 2c nonseminoma, with multiple, large lymph nodes affected. Despite this advanced stage, my prognosis was initially quite good, classified as good risk. HCG and LDH were initially elevated, but within the good risk range. Histology was 10% embryonal, 90% teratoma. Seemed like a layup TC case, with 3x BEP prescribed.

    During BEP, markers fell very rapidly. Had fairly bad nausea but escaped side effects quite well (not even any neuropathy). However, BEP failed, indicated by an HCG above prechemo levels (still in good risk territory) with some lymph nodes shrinking and others growing. Consulted with Einhorn, apparently that kind of failure is only 1-2% of cases.

    So, moving onto high dose chemo. Einhorn gave me dismal odds (40%). Read a lot of papers, found a really interesting couple of studies by Dr. Yago Nieto of MD Anderson. Turns out he's been doing a novel high dose chemotherapy regimen for the past 5+ years out of MD Anderson, and it's doing a lot better than the TI-CE plan by Einhorn, esp for refractory patients. If anyone has a really bad TC case (platinum refractory, multiple recurrances, several lines of chemo etc) you should really get in contact with him (I'd be happy to pass on his email address). I emailed him and out of the blue he calls me and tells me he's quite optimistic after we discuss my case. So, I'm flying down to Houston soon to give it a try.

    Anyways, I'm just posting to make new friends, and to hear about people's experiences on TIP and High Dose chemo, as I'll be having two cycles of each. BEP was no fun, but it seems like TIP + HDCT (plus an eventual RPLND) will make that feel pretty easy. I plan to be on quite a bit of Marijuana the whole time, so hopefully THC + compazine + zofran does the trick haha. However my kidneys are perfect, and I'm going into it with 0 neuropathy, so I feel like my body can handle another beating.

  • #2
    Hello Colin,

    Welcome to the forum. I'm sorry to hear BEP didn't work out favourably for you. However, it seems you have your next treatment figured out and arranged and you seem like quite the fighter. You are young and you mention you aced BEP like a champion, so I'm pretty confident you can take on the challenge that is HDCT.

    I was never aware of Dr. Yago Nieto's work so I did some reading after I read your post. If I'm not mistaken, he's doing a HDCT consisting of one cycle GemDMC and one cycle ICE with bevacizumab during both cycles. If that's what you're going for - it sounds very interesting and quite promising. Within testis primary and intermetiate prognosis groups the success rates are something like 66-70% despite a substansial number of patients had failed multiple lines of treatment.

    Yes, HDCT is definately more challenging than BEP and the protocol you've chosen is quite toxic, as mine was. But your body can handle it, as nasty as it might be at times. And after the HDCT you'd be amazed how rapidly your body can heal from the damage. I hope you're going into this with optimism, as high dose chemo is a very potent weapon against TC.

    Stay strong, Colin.
    Pure choriocarcinoma stage 3c - testis primary, mets to lungs, 4 lymph nodes >2 cm
    Left I/O 08/18
    BEPx4 10/18
    round 1 hcg - 225 000, down to 642 then rising
    round 2 hcg - 830, down to 40 then rising
    round 3 hcg - 72, down to 15 then rising
    round 4 hcg - 542, down to 7
    HDC regimen SWENOTECA IV 03/19
    round 1 hcg ~1500, down to 1.14 then rising
    round 2 hcg ~100, down to <0.1
    All clear 06/19. Remission.

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    • #3
      Hi Axel,

      Thanks for the support. I read your story and wow, you had a really bad case and were successful. 1.5 years in remission is an incredible accomplishment.

      Yes, that was the paper that caused me to contact Dr. Nieto. However, they've continued to tweak the treatment, for example they removed the bevacizumab and have added 2xTIP prior to the tandem stem cell transplants. This, combined with how Dr. Nieto tells me that the cure rates are now higher than the last published data, makes me hopeful.

      I will say that my optimism has been much greater upon finding this new treatment, as 40% odds with TI-CE felt more like 0% so it seems like things have changed quite a bit for the better. It's definitely hard mentally at times, but I guess I'm grateful for a good chance at cure, and loved ones that I can look forward to spending time with.

      What was your recovery from HDC like? I'm glad to hear that your recovery was suprisingly good.

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