Intimasarcoma

Registry & research hub for intimal sarcoma — an ultra-rare vascular malignancy. Connecting patients, clinicians, researchers.

[Intimasarcoma @Intimasarcoma]

5/ And: these models came from standard DICOM exports every hospital hands out on request. Patients own this data. The data to understand a <300-case disease exists – it sits on hard drives. That’s what the registry is for: https://t.co/8JZSUVrfmt

[Intimasarcoma @Intimasarcoma]

1/ What an intimal sarcoma looks like – and what it takes to take one out. Two 3D models from one patient’s own PET/CT scans, Feb and Aug 2026. Registry case IS-001, a man in his early forties. Built with Claude from his DICOM files – nothing drawn, everything from scan data.

[Intimasarcoma @Intimasarcoma]

4/ Why we show this: tumour inside an artery looks like a clot on CT. Many patients get months of anticoagulation for “pulmonary embolism” before anyone thinks of sarcoma. A PE that doesn’t respond, sits in an odd place, or comes with rising CRP: ask for an FDG-PET.

[Intimasarcoma @Intimasarcoma]

3/ August, three months after surgery at University Hospital Zurich (Prof. Schmitt-Opitz, thoracic + cardiac surgery): left pneumonectomy. RVOT, valve and trunk replaced by a donor homograft (blue). New right PA from a tube of pericardium. Gradient: 30 mmHg. PET: no sign tumour

[Intimasarcoma @Intimasarcoma]

2/ February: the tumour (orange) grew inside the wall of the pulmonary artery – from just above the valve through the main trunk and the entire left PA, into the origin of the right one. The right ventricle was pumping against a gradient of 89 mmHg.

[Philippe Willi @philippewilli]

What has been tried when intimal sarcoma comes back?

No standard treatment, no randomised trial. We put the published evidence on one page: 35 sources, with the number of patients behind every statement.

https://t.co/LPVtpk8wPC

[Intimasarcoma @Intimasarcoma]

@sytses Thank you !

[Yannick Buccella MD @YannickBuccella]

BioNTech/Roche just pulled the plug on their personalized mRNA cancer vaccine trial in colorectal cancer. Disappointing, but the measured read matters more than the headline.
What happened: the Phase 2 of the vaccine after surgery in colorectal cancer was terminated after the safety board found an overall-survival imbalance and decided more treatment wouldn't change the result.

On safety specifically: the "imbalance" means numerically more deaths on one side, but with immature data in a small trial, that can reflect chance, the specific patients enrolled, or the cancer itself, not necessarily harm from the vaccine. It's a signal that stopped the trial, not proof the vaccine hurt people.

But here's the important context: this was always one of the longer-shot uses. These vaccines seem to work best where the immune system already engages the tumor, the same cancers where immunecheckpoint drugs work. And many colorectal cancers are "cold", which means these drugs tend not to work that well. So a broad colorectal trial was betting against the grain.

What this does and doesn't mean:
• DOESN'T mean "mRNA cancer vaccines don't work." The melanoma programme hit its Phase 3. Different cancer, different odds.
• DOES mean this technology won't work everywhere, it'll likely track the cancers that are already immune-responsive.

The trials that actually matter for this platform: pancreatic cancer (the promising early-signal one) and non-small-cell lung cancer.
So: a real miss in a hard target, not a verdict on the whole field. The technology is being sorted cancer-by-cancer, which is exactly how honest science looks. Some bets lose.

Watch the space in pancreatic and lung.

[Sid Sijbrandij @sytses]

My cancer case is n=1. I'm not holding it up as a model, because most of what I did is not specifically replicable or scaleable. But it is a proof of concept that fully personalized medicine, built around one patient's own biology, is viable in ways it simply wasn't a few years ago. I have lived a version of the future of cancer care that I think is worth aspiring to more broadly.

Many of the tools that made this future possible for me are getting better, faster, cheaper, and more accessible every year. I think what we need next is the infrastructure to deploy these tools, and the community willing to build this infrastructure, one patient at a time.

I want to help that future arrive faster. I wrote an article in The Cancer Letter https://t.co/ejel0unTvr for the physicians and researchers closest to the patients who could benefit most from this approach, who also believe in this future. If you are working towards building the systems and practices that will make personalized medicine operationally real, we want to collaborate with you too.

[Intimasarcoma @Intimasarcoma]

Launching https://t.co/cnp1xl8Ofd — a patient-driven registry for intimal sarcoma, one of the rarest vascular malignancies (<500 published cases worldwide). Built to connect patients, clinicians & researchers, and speed up data-sharing on MDM2/CDK4-amplified disease.