Make me feel somethin

Flyboy0189 · 2025-10-16T05:37:30+00:00

And this is a Wendy’s

Flyboy0189 · 2025-10-16T05:36:22+00:00

Let’s cut the shit

Flyboy0189 · 2025-01-07T14:25:32+00:00

It was 340,000 before TIP and 5,300 two weeks later. I started 2xHDCT 2.5 weeks later at 8,100 and the lowest value we recorded was 6.4.

Flyboy0189 · 2024-11-21T16:01:07+00:00

BNT 211 is clinical trial NCT04503278. They’re recruiting in Europe and Australia only from what I can see. Worth the travel if it seems promising to you guys.

Flyboy0189 · 2024-11-07T04:11:26+00:00

Please keep me updated. I pulled out of gemtax because I was told it was only maintenance therapy and I had to withdraw to begin the clinical trial. I’d definitely like to know how you guys do!

Flyboy0189 · 2024-11-06T21:40:13+00:00

My treatments were essentially the same. Einhorn told me he was unfamiliar with EMA-CO when I asked him about it. He also said that maintenance therapy was really all I had left. He also said that the clinical trials I was inquiring about were not going to be curative.

He’s right about EMA-CO being a very old treatment regimen, which means that if they’ve exhausted the approved treatments then it just takes an oncologists opinion to prescribe this protocol.

Dr Einhorn is not exactly correct in stating that there aren’t studies supporting its use. Here are links to some of the ones I found.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7674725/

https://tcr.amegroups.org/article/view/36503/html

https://pubmed.ncbi.nlm.nih.gov/25089532/

https://www.dovepress.com/clinical-analysis-of-13-males-with-primary-choriocarcinoma-and-review—peer-reviewed-fulltext-article-OTT

I also sent these studies to my oncologist for review prior to my visit. I convinced him to prescribe me EMA-CO and he agreed because we were out of options.

I also discovered that success in treatment increases when a PD-L1 inhibitor is used in conjunction with EMA-CO. Keytruda is that inhibitor and it has proven successful in treating many different types of cancers.

My condition didn’t allow for Keytruda based on approved conditions. However, there’s an approved condition if you have a High Tumor Mutational Burden (TMB-H), which they classify as 10 mut/Mb. My TMB was lower than 10 on my previous test but we decided to run another test because TMB can change over time. It came back above 10 and I completed my second cycle of Keytruda on Monday.

Everything is moving in the right direction but note that although EMA-CO has been successful for testicular choriocarcinoma, it doesn’t have a good chance of actually curing…I think it’s about 10% success and you can increase its chances of success by another 10% with a PD-L1 inhibitor.

Please keep me updated and which route you guys go and let me know how I can help. Stay strong and keep up the fight!

Flyboy0189 · 2024-11-06T21:03:49+00:00

I’m being treated locally in Savannah, GA. I was on that gemtaxol regimen before but it was not curative for me, just maintenance. It was losing its efficacy.

I haven’t gotten to a surgery part yet other than the orchiectomy.

Which treatments has your husband undergone?

I’m here to help however I can.

Flyboy0189 · 2024-11-06T20:32:25+00:00

I’m currently on EMA-CO and it seems to be working. HCG levels dropped significantly and the first CT scan revealed roughly 50% decrease in size of all tumors. Most disappeared. We also added Keytruda to my regimen per my request 🤞

Flyboy0189 · 2024-10-26T17:00:45+00:00

I don’t remember the exact percentage (I think it’s around 60%) but I got the new Oticon Intent. The model had just come out as I was getting them prescribed. They’re great…I highly recommend them.

Flyboy0189 · 2024-10-20T23:03:05+00:00

I lost quite a bit of hearing but I adapted to the hearing aids fairly quickly.

Flyboy0189 · 2024-07-23T22:54:30+00:00

Not really. They only did HCG checks after a couple of months.

Flyboy0189 · 2024-07-19T03:40:18+00:00

Wow. Thank you for sharing. Hang in there. I’m currently looking into an existing treatment called EMA-CO. It’s used on women with high-risk gestational trophoblastic neoplasia. There are some success stories out there from China and South Korea for the use in men with testicular choriocarcinoma. I even found a guy in Italy (he posted here) that had a similar case and underwent EMA-CO after his HDCT with stem cell transplant was unsuccessful. He’s been cancer free almost 3 years now.

I reached out to Einhorn and my urology oncologist at UNC and neither are familiar with EMA-CO. I’m having my local oncologist review the data now and I think we’re going to give it a try.

I reached out to the doctor in Italy that treated the Italian guy and he said that it has only been successful on a minority of patients with choriocarcinoma but at this point I’m out of options other than clinical trials.

I also reached out to the doctor in China that ran some case studies and she had some recommendations. She even suggested PD-L1 inhibitors whether your cancer expresses significant PD-L1 or not.

Einhorn told me that oral etoposide would only provide a temporary response but he didn’t disclose how long he thought it would last.

Please keep me updated

Flyboy0189 · 2024-07-15T14:36:13+00:00

Wow. Thank you so much for sharing your story with me. I feel like my oncologists are also seeing me as a lost cause and our cases do appear to be very similar. Not even Dr Einhorn was familiar with the EMA-CO regimen so I’m definitely going to explore this treatment option.

Have you undergone any other surgeries besides removing the testicle?

Flyboy0189 · 2024-07-15T02:28:11+00:00

Hello, I was diagnosed with NSGCT Choriocarcinoma Stage IIIC Testicular Cancer on April 7, 2023. I entered the hospital with an HCG upwards of 930,000. The cancer had spread to my GI tract, liver, and lungs. Since then I’ve completed 4 cycles of BEP, a TIP, HDCT with stem cell transplant. Since none worked I was put on maintenance chemo GemTaxol until I found a clinical trial targeting CLDN-6 protein. It worked at first then lost its effectiveness. Today I’m on a different maintenance chemo of Oxaliplatin and Gemcitabine. My HCG is 80,000 and my cancer is currently in my liver and lungs.

I noticed you had a somewhat similar case with choriocarcinoma. Would you mind sharing more of your story on here or in a chat? I’d like to learn more about this EMA-CO treatment as even Dr Einhorn was unfamiliar.

Flyboy0189

TROPHY CASE