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Any specific work with Poorly differentiated chordoma?
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Any specific work with Poorly differentiated chordoma?
Family friend is diagnosed with poorly differentiated chordoma – a rapidly growing chordoma with significantly poor prognosis.
I’m looking for any onco/integratives, or other HCPs who’ve dealt with this, using MSCC protocols.
tx!
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1 Reply
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Hi,
I am so sorry to hear about your friend.
You should immediately contact the Chordoma Foundation (https://www.chordomafoundation.org/), the patient organization for people who have been diagnosed with chordoma (and their near and dear ones). They can give advice on physicians (surgeons etc.) to contact, the specialists with the most experience specifically of chordoma etc.
Getting a chordoma diagnosis can feel dismal (my husband has chordoma) but luckily the patient organization for this particular type of cancer is amazing! They have patient navigators, and they even have their own researchers working on a cure for chordoma.
In fact, next year they will be starting a clinical trial on a new substance that specifically targets the complex protein (called brachyury) that acts as a driver for chordoma tumours. Maybe your friend could join that study as a patient.
I hope you can get help from them. Good luck!
chordomafoundation.org
Accelerating better treatments
Improving the lives of those affected by chordoma. Leading the search for a cure.
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