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He just wrapped up his sixth cycle. Before he can actually start radiation, we need to get a high-precision scan so the oncologist knows exactly how much SSGA we're dealing with. Right now, a PET/CT scan is the only way to go. To be honest, the PET scans here at the Mayo Clinic aren't up to par—at least, that’s what the oncologists there have told us. They aren't quite reliable enough. Apparently, they've ordered four new machines, but there is absolutely no way they'll arrive before the end of the year.
The closest, most reliable option currently is over in Denver. As for Budapest, this is actually the first I'm hearing that they offer that service there. Personally, I’m leaning toward Denver, if only because it makes the communication a bit easier. 😬
Does anyone happen to have the latest details on getting a PET/CT scan done over in Denver? I’m looking for phone numbers, an address, an email—pretty much anything you can dig up. I recall some discussion earlier regarding the search process itself, and there was talk about booking appointments through Salt Lake City, but apparently, they aren't accepting our patients anymore. That leaves us stuck looking at the Denver option for now. Thanks in advance, 🙏
Charles Edwards8 said:Angela Wright explained everything perfectly.👍
I have my own heavy story to share—something I touched on briefly back in the early '90s when my son was diagnosed with synovial sarcoma. We went through surgery and radiation, and everything seemed fine until just last year.
In December, things took a turn for the worse: an amputation of his right hand and forearm. It turns out the tumor was malignant (sarcoma), though they still haven't pinned down the exact type. I’m still sitting here waiting for the "final" pathology report before we can even start the right kind of chemotherapy.👎
Forgive me if I'm being intrusive, but you're the only person I've come across who has dealt with synovial sarcoma. If you don't mind me asking, where was the tumor located for you, and which specialists are you seeing? Did you end up needing chemo?
My husband is actually heading into his sixth cycle right now; he's on Doxorubicin (Adriamycin) and Ifosfamide (Holoxan). His situation is quite grim—the tumor is in the mediastinum. He's currently being treated at Mayo Clinic under Dr. Smith.
I support this thread with everything I have. My husband is fighting synovial sarcoma in his mediastinum. I still remember back in October of last year when he had his surgery; we were sitting there, hearts in our mouths, just waiting for the pathology report. Then, to make matters worse, a nurse called us with the wrong diagnosis entirely. When we finally sat down with the surgeon to figure out our next move, he basically just shrugged and said, "Just find an oncologist somewhere..."
In the US, there are only two doctors who actually know what they’re doing regarding this specific type of sarcoma.
Those days spent hunting for a competent doctor were made even more miserable because there was absolutely zero information available about this disease—unless you were scouring American websites.
Anyway, we’ve managed to hold our own. He’s heading in for his sixth round of chemo this week. There’s been some progress, albeit small; the tumor has shrunk, and I’m praying it disappears completely. As for alternative therapies, we’re trying just about everything—bioenergy, Rife methods, and most importantly, plenty of laughter, love, and sex. 😍