Sure feels like it. The regorafenib didn't work. I got the news on Wednesday. The pleural tumors grew; the largest is now 2.6cm. Three enlarged lymph nodes near the heart, and some tiny lung spots too. And I'd had my life (mostly) back. I was going to work full-time again and getting stuff done. Thankfully I got one project I was working on to a stage where I could submit a paper. Fingers crossed...
So now, I've had two treatments which are low on side effects compared to my others (regorafenib and Keytruda), and neither worked. The "classic" chemo treatments that did work were, on the other hand, harsh. Does that mean that a treatment has to be tough in order to work? I sure hope not! But I wouldn't mind that holding true now. I'm considering a few options, that I expect to be harder on me than regorafenib:
1. TK-216 clinical trial: this is one of the first drugs specifically targeted to Ewing's sarcoma. It's supposed to act on a protein produced by the EWS/FLI-1 gene fusion present in most cases of Ewing's. The downside is that it's a Phase I trial. In Phase I trials, the goal is to establish the right dose to give to human patients. So patients start at a low dose, likely to be subtherapeutic. Subsequent patients (they are organized into cohorts) get higher doses; this escalation continues until unacceptable side effects (formally referred to as dose-limiting toxicities) result. Some Phase I trials allow for dose escalation within cohorts, and some don't. I meet with the closest participating institution (UCLA) on Monday to find out all the details.
2. Vigil clinical trial: this is a Phase II trial of a vaccine made from a patient's individual tumor. The idea is to train the immune system to recognize tumors as foreign entities and kill them. Phase II means the dose has been established; the goal now is to study efficacy. In this trial, there's also a comparison arm with a chemotherapy regimen (gemcitabine/docetaxel) used to treat a number of sarcomas. Assignment to arms is at random, so there's only a 50% chance of getting the vaccine. The other issue is that surgery is required to obtain the tumor sample used for vaccine production (unless I get "lucky" and have at least 500 mL of pleural effusion handy), and surgery has had a history of causing any tumors in the vicinity of the operation to blow up and grow even more quickly (the one exception was my amputation, where the cut was made in a disease-free area and all of the tumors were removed). On top of that, I'm not sure how much local control of remaining tumors if any I'll be allowed to pursue while I'm recovering from surgery/the vaccine is being produced. The closest participating location for this trial is a sarcoma clinic in Santa Monica, which I'll also be visiting to get more details.
3. More chemo: there are a couple of drug combinations I can still try, which I can get these close to home. One in particular has shown promise in early published data; I'll be more specific if that's the route I end up pursuing.
On top of deciding between these options for systemic treatment, I'll also be looking at using radiation to kill the tumors I currently have. I think I can feel one of my pleural tumors starting to push on something, which has resulted in a feeling of heaviness/tightness on the left side of my chest near where I had my thorascopic surgeries last year. I can still breathe fine for the moment, but that won't last forever if I don't do something. Hopefully I'll have a decision in a few days.
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