Posts by Elizabeth Perez76

Angela Wright said:The primary tumor usually shrinks during therapy, which makes it much easier to surgically remove later on. That could definitely be the reason.

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That’s what we’re all praying for! The extra layer of worry is the metastases in the spine. I actually remember reading about a case involving Ewing sarcoma where those retreated too after they did the neoadjuvant chemo.

Hey everyone,
My father-in-law was just diagnosed with metastatic colon cancer, and it's spread to his liver. It seems like things are progressing pretty quickly because his markers have spiked, so we're just waiting on the CT scan results to confirm everything. Regardless of what the scan shows, he’s been running a fever up to 100.4°F for over ten days now. We tried antibiotics, but they didn't seem to touch it, and he's already dropped about 11 pounds in a single week. He isn't a candidate for Megostat since he's dealt with issues from the CDC before, and the doctors haven't really offered any other alternatives yet. Right now, he's just stuck at home fighting this fever, and they won't let him start chemo until his temperature settles down. If anyone has been through something similar, I’d really appreciate some advice.

Thanks!

Angela Wright said:For all types of sarcomas, surgical removal is really the best way to go—whenever and wherever it's possible.
If you're looking for the top sarcoma specialist in Europe, Dr. Casali in Milan is the guy. It’s probably best to reach out to him as soon as you can.
https://www.medifind.com/doctors/pao...asali/17903153

When it comes to rib sarcomas, Herceg and Šantek are the big names to know. I'd say Šantek is a bit easier to talk to, though; he's very open when it comes to discussing different clinical trials.

Thanks for getting back to me! I thought I’d get an email notification when there was a reply, so sorry for the delay.
A friend of mine actually went to a private clinic in Vienna after they first made contact. They ended up starting the first round of chemo there because the doctors felt they couldn't wait—they wanted to jump on treatment immediately, even before he had finished his PhD. It seemed a little unusual to everyone, but the family agreed, probably out of fear or just wanting to take action. Dr. Simetić was kept in the loop on everything. Now that he's finished his PhD back in New York, he’ll be continuing the remaining chemo cycles there. It seems like they decided surgery wasn't an option right now, maybe due to metastasis?
Anyway, Dr. Herceg is familiar with the case, but Dr. Simetić is still the main one handling everything. They were told that they work closely together, so hopefully, he's in good hands.

Sending big, warm, empowering greetings to everyone here

I’ve been following this group for about a year now, searching for answers and finding comfort in all the experiences you share.

Why reach out now? Well, while I've been learning about metastatic colorectal cancer over this past year, we just hit another tough diagnosis—one where, unfortunately (or maybe luckily?), I can't find much information online.

It involves someone very close to me, a young person (born in 1991), who was diagnosed with a sarcoma in their sternum with metastases spread along several points of the spine. They've done multiple biopsies, but it seems to be a really rare type because they've only confirmed it's a sarcoma; they aren't certain of the specific subtype yet, though they suspect it might be Ewing sarcoma.

I know some of you here have fought through sarcomas yourselves, alongside your family members, so I was hoping to hear about your experiences.

A friend has an appointment this Monday with an oncologist, Dr. Smith, at the major city hospital, and in the meantime, the family is trying to get in touch with specialist centers elsewhere to send over samples for a second opinion.

Thanks in advance to anyone who can find the time and heart to reply!