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.
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.
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