Finally checked my MRI results for cancer recurrence.
It appears that the hysterectomy I had in 2002 didn't take. "Uterus and ovaries appear normal." Or these organs grew back.
No chordoma recurrence found. That's a win.
It appears that the hysterectomy I had in 2002 didn't take. "Uterus and ovaries appear normal." Or these organs grew back.
No chordoma recurrence found. That's a win.
December 27, 2025 at 1:35 PM
Finally checked my MRI results for cancer recurrence.
It appears that the hysterectomy I had in 2002 didn't take. "Uterus and ovaries appear normal." Or these organs grew back.
No chordoma recurrence found. That's a win.
It appears that the hysterectomy I had in 2002 didn't take. "Uterus and ovaries appear normal." Or these organs grew back.
No chordoma recurrence found. That's a win.
April 18, 2024 at 7:05 AM
Extra-axial conventional chordoma of an interphalangeal joint. Sure, why not- it’s Friday. You can also get poorly differentiated, SMARCB1-deficient chordoma in joints, most often the left knee. I have no idea why. pubmed.ncbi.nlm.nih.gov/39577663/
Extraaxial Poorly Differentiated Chordoma: Clinicopathologic and Molecular Genetic Characterization - PubMed
Poorly differentiated chordoma (PDC) is an aggressive subtype of chordoma characterized by SMARCB1 (INI1) loss and a dismal prognosis. It typically involves the axial skeleton, most commonly the skull...
pubmed.ncbi.nlm.nih.gov
March 14, 2025 at 7:11 PM
Extra-axial conventional chordoma of an interphalangeal joint. Sure, why not- it’s Friday. You can also get poorly differentiated, SMARCB1-deficient chordoma in joints, most often the left knee. I have no idea why. pubmed.ncbi.nlm.nih.gov/39577663/
Some tumor look-a-likes on this Friday:
Chordoid meningioma and chordoma can share similar features of cords of cells in a myxoid background. Chordoma shows diffuse nuclear Brachyury expression whereas chordoid meningioma is positive for SSTR2 helping to differentiate the two 🧠 #pathsky #neuropath
Chordoid meningioma and chordoma can share similar features of cords of cells in a myxoid background. Chordoma shows diffuse nuclear Brachyury expression whereas chordoid meningioma is positive for SSTR2 helping to differentiate the two 🧠 #pathsky #neuropath
December 6, 2024 at 5:46 PM
Some tumor look-a-likes on this Friday:
Chordoid meningioma and chordoma can share similar features of cords of cells in a myxoid background. Chordoma shows diffuse nuclear Brachyury expression whereas chordoid meningioma is positive for SSTR2 helping to differentiate the two 🧠 #pathsky #neuropath
Chordoid meningioma and chordoma can share similar features of cords of cells in a myxoid background. Chordoma shows diffuse nuclear Brachyury expression whereas chordoid meningioma is positive for SSTR2 helping to differentiate the two 🧠 #pathsky #neuropath
Scientist makes a ‘thrilling’ breakthrough for chordoma, the cancer that killed his mother.
New research points to a potential route to tackle the previously undruggable transcription factor brachyury, & so beat the disease.
Link to paper below. 🧪🧬
www.theguardian.com/science/2025...
New research points to a potential route to tackle the previously undruggable transcription factor brachyury, & so beat the disease.
Link to paper below. 🧪🧬
www.theguardian.com/science/2025...
British professor makes ‘thrilling’ breakthrough for cancer that killed his mother
Paul Workman has researched untreatable chordoma for years. Now new technology points towards to a potential drug to beat it
www.theguardian.com
February 16, 2025 at 10:34 AM
Scientist makes a ‘thrilling’ breakthrough for chordoma, the cancer that killed his mother.
New research points to a potential route to tackle the previously undruggable transcription factor brachyury, & so beat the disease.
Link to paper below. 🧪🧬
www.theguardian.com/science/2025...
New research points to a potential route to tackle the previously undruggable transcription factor brachyury, & so beat the disease.
Link to paper below. 🧪🧬
www.theguardian.com/science/2025...
Actor and philanthropist Gary Sinise has lost his son Mac to Chordoma, a very rare cancer.
He wrote a very moving essay about his son’s life which you can read here:
www.garysinisefoundation.org/mac-tribute
He wrote a very moving essay about his son’s life which you can read here:
www.garysinisefoundation.org/mac-tribute
February 28, 2024 at 4:45 AM
Actor and philanthropist Gary Sinise has lost his son Mac to Chordoma, a very rare cancer.
He wrote a very moving essay about his son’s life which you can read here:
www.garysinisefoundation.org/mac-tribute
He wrote a very moving essay about his son’s life which you can read here:
www.garysinisefoundation.org/mac-tribute
We were recently nominated for a podcast award for this episode with Matt Forde, not long after he finished his treatment for a chordoma. Have a listen. It’s quite something:
callybeaton.com/podcast/
🎙️ 🙏🏻
@cflabsresearch.bsky.social
callybeaton.com/podcast/
🎙️ 🙏🏻
@cflabsresearch.bsky.social
May 8, 2025 at 6:05 PM
We were recently nominated for a podcast award for this episode with Matt Forde, not long after he finished his treatment for a chordoma. Have a listen. It’s quite something:
callybeaton.com/podcast/
🎙️ 🙏🏻
@cflabsresearch.bsky.social
callybeaton.com/podcast/
🎙️ 🙏🏻
@cflabsresearch.bsky.social
Rare disease day. I have chordoma, a one in a million cancer. 300 new cases a year. My husband died of neuroendocrine cancer, 10,000 new cases a year.
i note the steep cuts to the National Cancer Institute budget.
i note the steep cuts to the National Cancer Institute budget.
February 28, 2026 at 10:10 PM
Rare disease day. I have chordoma, a one in a million cancer. 300 new cases a year. My husband died of neuroendocrine cancer, 10,000 new cases a year.
i note the steep cuts to the National Cancer Institute budget.
i note the steep cuts to the National Cancer Institute budget.
📰 Prof Paul Workman, our former CEO, along with his team in our Centre for Cancer Drug Discovery, have made a breakthrough that could lead to new drugs for #chordoma — a rare #BoneCancer that led to the death of his mother.
Read more in @theguardian.com ⤵️
www.theguardian.com/science/2025...
Read more in @theguardian.com ⤵️
www.theguardian.com/science/2025...
British professor makes ‘thrilling’ breakthrough for cancer that killed his mother
Paul Workman has researched untreatable chordoma for years. Now new technology points towards to a potential drug to beat it
www.theguardian.com
February 15, 2025 at 5:38 PM
📰 Prof Paul Workman, our former CEO, along with his team in our Centre for Cancer Drug Discovery, have made a breakthrough that could lead to new drugs for #chordoma — a rare #BoneCancer that led to the death of his mother.
Read more in @theguardian.com ⤵️
www.theguardian.com/science/2025...
Read more in @theguardian.com ⤵️
www.theguardian.com/science/2025...
It was so lovely to meet @matt-forde.bsky.social tonight. His show had me crying with laughter - both his political jokes and his personal story of chordoma
We raised a decent bit of cash for
Bone Cancer research too
@bcrt-uk.bsky.social
We raised a decent bit of cash for
Bone Cancer research too
@bcrt-uk.bsky.social
February 26, 2025 at 10:15 PM
It was so lovely to meet @matt-forde.bsky.social tonight. His show had me crying with laughter - both his political jokes and his personal story of chordoma
We raised a decent bit of cash for
Bone Cancer research too
@bcrt-uk.bsky.social
We raised a decent bit of cash for
Bone Cancer research too
@bcrt-uk.bsky.social
New Preprint Alert! 🚨 Targeting Metabolic Stress in Chordoma - with @AdamCribbs
Could glutamyl-prolyl-tRNA synthetase (EPRS) inhibition be a new therapeutic avenue for #chordoma?
Read our preprint here: www.biorxiv.org/content/10.1...
Could glutamyl-prolyl-tRNA synthetase (EPRS) inhibition be a new therapeutic avenue for #chordoma?
Read our preprint here: www.biorxiv.org/content/10.1...
ATF4-Mediated Metabolic Stress Response as a Therapeutic Vulnerability in Chordoma
Chordoma, a rare primary bone malignancy, currently lacks effective targeted therapies. Despite surgical resection and adjuvant radiotherapy, prognosis remains poor. Recent preclinical studies have hi...
www.biorxiv.org
March 16, 2025 at 11:37 AM
New Preprint Alert! 🚨 Targeting Metabolic Stress in Chordoma - with @AdamCribbs
Could glutamyl-prolyl-tRNA synthetase (EPRS) inhibition be a new therapeutic avenue for #chordoma?
Read our preprint here: www.biorxiv.org/content/10.1...
Could glutamyl-prolyl-tRNA synthetase (EPRS) inhibition be a new therapeutic avenue for #chordoma?
Read our preprint here: www.biorxiv.org/content/10.1...
I'm around a half million thus far. Just to get the tumor out. No idea what the price tag will be for proton radiation if the tumor returns. Or if they find a drug that works for chordoma.
And if it returns, haven't calculated the cost of nursing home care.
And if it returns, haven't calculated the cost of nursing home care.
May 8, 2025 at 1:11 PM
I'm around a half million thus far. Just to get the tumor out. No idea what the price tag will be for proton radiation if the tumor returns. Or if they find a drug that works for chordoma.
And if it returns, haven't calculated the cost of nursing home care.
And if it returns, haven't calculated the cost of nursing home care.
It is my MRI. Not any patients that I know of here in Southern IL with this rare cancer. The DX code is correct and so is the language about my missing tailbone and partial sacrum.
This cancer is that rare. One in a million chance of getting chordoma. One in 100,000 that anyone inherits it.
This cancer is that rare. One in a million chance of getting chordoma. One in 100,000 that anyone inherits it.
December 27, 2025 at 3:14 PM
It is my MRI. Not any patients that I know of here in Southern IL with this rare cancer. The DX code is correct and so is the language about my missing tailbone and partial sacrum.
This cancer is that rare. One in a million chance of getting chordoma. One in 100,000 that anyone inherits it.
This cancer is that rare. One in a million chance of getting chordoma. One in 100,000 that anyone inherits it.
CHORDOMA RELEASE "CHORDOMA"
musicextreme666.blogspot.com/2025/01/chor...
#metal #deathmetal #brutaldeathmetal #musicextreme #mosh #guitar #extrememusic #headbang #mosh #metalhead #metalmusic #MetalSky
musicextreme666.blogspot.com/2025/01/chor...
#metal #deathmetal #brutaldeathmetal #musicextreme #mosh #guitar #extrememusic #headbang #mosh #metalhead #metalmusic #MetalSky
CHORDOMA RELEASE "CHORDOMA"
PRESS RELEASE: CHORDOMA – CHORDOMA EP LABEL: COMATOSE MUSIC RELEASE DATE: MARCH 7th 2025 I lean over your bed and stare down into those fr...
musicextreme666.blogspot.com
January 7, 2025 at 1:52 PM
Photo is Jeannie in Boston in September 1993 at a march to end the silence on chemical carcinogens and their role in women’s cancers.
Jeannie herself had been diagnosed in her 20s with chordoma, a rare type of spinal cancer.
Jeannie herself had been diagnosed in her 20s with chordoma, a rare type of spinal cancer.
April 8, 2025 at 3:27 PM
Photo is Jeannie in Boston in September 1993 at a march to end the silence on chemical carcinogens and their role in women’s cancers.
Jeannie herself had been diagnosed in her 20s with chordoma, a rare type of spinal cancer.
Jeannie herself had been diagnosed in her 20s with chordoma, a rare type of spinal cancer.
If you enjoy brutal death and missed this EP back in February, get on it. It’s an ass-beater
April 6, 2025 at 3:10 PM
If you enjoy brutal death and missed this EP back in February, get on it. It’s an ass-beater
My (sacral) chordoma has a different set of issues, but here's a rundown of what clival chordoma does to your life
#chordoma #mentalhealth
I want to write a little bit about my experience with chordoma. So that other people who suffer from it, or maybe their friends & families, might find this & be able to read it to better understand about this rare condition & how it affects paitents.
1/?
I want to write a little bit about my experience with chordoma. So that other people who suffer from it, or maybe their friends & families, might find this & be able to read it to better understand about this rare condition & how it affects paitents.
1/?
January 22, 2025 at 11:50 AM
My (sacral) chordoma has a different set of issues, but here's a rundown of what clival chordoma does to your life
Its #PortfolioDay!
I am an Australian artist. 🦘
Following and supporting creative people! 💕
Living with Chordoma. 💀
Digital illustration & Nature photography are my main media. I draw mostly fanart and take photos of clouds, insects, and plants. ☁️🐛🌱
#illustration #art #artistsupport #artshare
I am an Australian artist. 🦘
Following and supporting creative people! 💕
Living with Chordoma. 💀
Digital illustration & Nature photography are my main media. I draw mostly fanart and take photos of clouds, insects, and plants. ☁️🐛🌱
#illustration #art #artistsupport #artshare
January 14, 2025 at 12:22 PM
Its #PortfolioDay!
I am an Australian artist. 🦘
Following and supporting creative people! 💕
Living with Chordoma. 💀
Digital illustration & Nature photography are my main media. I draw mostly fanart and take photos of clouds, insects, and plants. ☁️🐛🌱
#illustration #art #artistsupport #artshare
I am an Australian artist. 🦘
Following and supporting creative people! 💕
Living with Chordoma. 💀
Digital illustration & Nature photography are my main media. I draw mostly fanart and take photos of clouds, insects, and plants. ☁️🐛🌱
#illustration #art #artistsupport #artshare
October 11, 2025 at 11:49 AM
#artist #illustration #photography
I am an Australian artist.
Following and supporting creative people.
Living with Chordoma.
Digital illustration & photography are my main media.
Photos of nature, clouds, & Fanart.
You can view more of my fanart works here: www.pixiv.net/en/users/114...
I am an Australian artist.
Following and supporting creative people.
Living with Chordoma.
Digital illustration & photography are my main media.
Photos of nature, clouds, & Fanart.
You can view more of my fanart works here: www.pixiv.net/en/users/114...
December 12, 2024 at 6:45 AM
#artist #illustration #photography
I am an Australian artist.
Following and supporting creative people.
Living with Chordoma.
Digital illustration & photography are my main media.
Photos of nature, clouds, & Fanart.
You can view more of my fanart works here: www.pixiv.net/en/users/114...
I am an Australian artist.
Following and supporting creative people.
Living with Chordoma.
Digital illustration & photography are my main media.
Photos of nature, clouds, & Fanart.
You can view more of my fanart works here: www.pixiv.net/en/users/114...
He's awesome!
He also set up a charity in honor of his son who died from the rare cancer I have.
www.chordomafoundation.org/path-to-cure...
He also set up a charity in honor of his son who died from the rare cancer I have.
www.chordomafoundation.org/path-to-cure...
Moving Ahead for Cures (MAC) Fund: The Mac Sinise Fund to Accelerate…
Donors to this fund are enabling us to bring new, more effective treatments to chordoma patients as quickly as possible.
www.chordomafoundation.org
September 18, 2026 at 1:49 PM
He's awesome!
He also set up a charity in honor of his son who died from the rare cancer I have.
www.chordomafoundation.org/path-to-cure...
He also set up a charity in honor of his son who died from the rare cancer I have.
www.chordomafoundation.org/path-to-cure...
and there is such a huge difference between common and rare tumors. my colon biopsy was like 34 pages long with the anomalies and what chemo would be effective, my spine was 1 page that was pretty much "yup it's chordoma like we thought"
September 1, 2026 at 6:30 PM
and there is such a huge difference between common and rare tumors. my colon biopsy was like 34 pages long with the anomalies and what chemo would be effective, my spine was 1 page that was pretty much "yup it's chordoma like we thought"
The desperate effort that my late husband and I went through to maintain his access to pain medication to treat late stage chordoma-a type of sarcoma- which is unbelievably painful then- at times destroyed his quality of life, so close to the end of life. And I am still traumatized by it.
December 9, 2024 at 9:15 PM
The desperate effort that my late husband and I went through to maintain his access to pain medication to treat late stage chordoma-a type of sarcoma- which is unbelievably painful then- at times destroyed his quality of life, so close to the end of life. And I am still traumatized by it.