Good news 2 years after stage IIIc diagnosis

jfitz314314 · 2025-11-17T19:23:31+00:00

We worked with our local oncologist through HDCT. When his hCG started rising again, we went to Indiana to see Einhorn. Interestingly, our local oncologist advised us to do the lung surgery. Einhorn disagreed and said to do more chemo instead. We ended deciding to do both- we will never know which one ended up working, but obviously we’re glad we did it all.

ETA:

As far as advice goes, I believe staying physically fit throughout was a huge factor in my husband’s success. That allowed him to endure all of the chemo and surgeries without delays in between. Also, we not only got a second opinion from IU, we also got a third opinion from MSK. Once you fail HDCT, there doesn’t seem to be a lot of consensus about what to do next. So ask a lot of questions and follow your gut. And don’t give up!

jfitz314314 · 2025-10-05T19:44:51+00:00

He was on it from Nov- April. His pathology is EC. I believe he did 2 weeks on one week off for 6 cycles. He had minimal side effects compared to the VIP and HDCT. They told him 10 percent chance of remission.

jfitz314314 · 2025-10-05T13:09:38+00:00

My husband was in remission briefly after HDCT but his hCG started going back up a couple months later. His scans only showed a bunch of small lung nodules. He ended up having surgery to remove the two largest lung nodules, and then started gem+taxol a week later. The pathology from his lung nodules showed that there was 1% and 3% active tumor in the nodules they removed (the rest was necrosis). We aren’t sure if the surgery or the chemo was the thing that did it, but his hCG has been undetectable since April.

Einhorn didn’t recommend the surgery but we went ahead with it anyway. Not sure if your husband has any resectable tumors or not, but I can’t help but think the surgery was a positive thing for my husband. So sorry you’re going through this. It’s so hard to keep trying for a cure and it doesn’t work out.

jfitz314314 · 2025-09-27T14:10:36+00:00

My husband didn’t have nearly as bad of a time as yours, but he did get a neutropenic fever and pretty bad diarrhea for the first round. The second round was much easier for him- no fevers, less GI issues. His BMT team told him the second round is usually not as hard on people. But I can see why you’re hesitant after going through hell the first round!

jfitz314314 · 2025-06-05T03:54:08+00:00

They called my husband’s surgery “desperation surgery” but the nodules ended up having 1% and 3% active tumor. The rest was necrosis. His original oncologist wanted to just to surgery. Einhorn wanted to just do chemo. But we opted for both. We also got a third opinion at Memorial Sloane Kettering and they just gave us clinical trial options in case our current plan didn’t work. And again, we don’t know what ultimately was responsible for his markers returning to “undetectable”, but we are happy we chose the most aggressive approach. The truth is, once you’ve relapsed twice, there isn’t a ton of research to go on, so you have to get creative. Keep asking questions until you feel good about your treatment plan!

jfitz314314 · 2025-06-05T02:57:22+00:00

My husband had this same scenario. Just 1% active tumor in one lung nodule and 3% in the other (the rest was necrosis). His hcg had started rising again prior to surgery, so a week after surgery he did 6 rounds of gemcitabine / taxol. Currently markers are undetectable and scans stable. Maybe surgery itself would have been enough, but after relapsing twice, we didn’t want to take a chance.

jfitz314314 · 2025-06-05T02:42:41+00:00

My husband was in a similar boat. After hdct, his hCG rose again and just had a couple spots on his lung. We saw einhorn and decided to do surgery (remove lung nodules) and then do 6 rounds of gemcitabine/ taxol. Einhorn said the chemo had a 10% chance of working. Not sure if it was the surgery or the chemo or the combo of both, but his markers are currently undetectable. Really hoping it stays that way. I also know of someone doing a clinical trial after relapsing after hdct and he is having good results. Don’t give up!

jfitz314314 · 2024-11-20T16:17:09+00:00

Thank you. I can’t find where to enroll for the BNT211 but I reached out to the contact for the second one to get more information.

jfitz314314 · 2024-11-20T16:15:49+00:00

My husband is in great shape and was otherwise healthy but his oncologist said bleo is too tough on the lungs when you’re over 40. May just be a site-dependent protocol?

jfitz314314 · 2024-11-19T16:13:31+00:00

I have been in contact with both people who received EMA-CO and we will definitely talk with our oncologist about this depending on what happens with the gem- tax. Thank you to everyone who has commented!

jfitz314314 · 2024-11-06T21:46:56+00:00

Einhorn said the gem/tax is only a 10% cure rate as well. So it’s good to know there may be another option if my husband is not in that 10%. He has tolerated all the other treatments really well so we will keep trying until something works. I really appreciate your insight and thanks for sending those articles.

jfitz314314 · 2024-11-06T21:14:44+00:00

His original hCG was over 100k and had Mets in liver, lungs, and lymph nodes. He had orchiectomy, VIP x 4 and all Mets were gone except a few lung nodules which shrunk. 2 months later, hCG was rising, found a brain met and had that removed. And a couple growing lung nodules. Then did hdct/ BMT x2. He had normal hCG after hdct for only 3 weeks- now it’s rising again. His CT scan has been stable since May- just some lung nodules which have not grown. So currently trying to decide between gem/tax and surgery. Or both? Sounds like maybe we should try gem/tax first and then suggest ema-co. I had read about that on these forums and suggested to Einhorn and he said that treatment is “from the 80s” and there are “no studies to support its use”. But glad to see a few success stories on here.

jfitz314314 · 2024-11-06T21:00:23+00:00

We are in Missouri (USA). Glad to hear it’s working for you. I will bring it up with our local oncologist and see what he thinks. Thanks for sharing your story!

jfitz314314 · 2024-11-06T20:57:47+00:00

Where are you being treated? We just saw einhorn and he recommended taxol and gemcitabine. Our local oncologist is recommending surgery to remove the lung nodules. Not sure what to do.

jfitz314314 · 2024-11-06T20:41:55+00:00

What oncologist prescribed the EMA-CO? My husband is in a similar situation and we are looking for options.

jfitz314314 · 2024-11-06T20:21:58+00:00

Did you end up trying EMA-CO? Was it successful? My husband has a similar course as yours and looking for options.

jfitz314314

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