Resize Your Font
Patients & Caregivers
Resize Your Font
Thank You To Our Sponsors!
News
December 3, 2024
Today, Cynthia Oxman kindly shared tips and strategies with CHCC to help people manage grief over the holidays. A video of her presentation is available below and on our Youtube channel.
Cynthia Oxman, MSW, is a retired social worker who spent many years with palliative care patients on the oncology unit at the Red Deer Regional Hospital Centre in Red Deer, Alberta, Canada. In her capacity, she supported both patients and family members.
Cynthia Oxman, MSW, is a retired social worker who spent many years with palliative care patients on the oncology unit at the Red Deer Regional Hospital Centre in Red Deer, Alberta, Canada. In her capacity, she supported both patients and family members.
November 22, 2024
[Patient Voice] The dawn of a new era for Canadians living with cholangiocarcinoma
In the lush foothills south of Calgary, with the Rockies towering at her doorstep and her husband, rescue dogs, and horses at her side, Jennifer Nielsen is planning to live a good long time. At 56, she can easily picture herself still strong and vibrant at 90. There’s only one thing standing in her way: a rare, aggressive form of biliary tract cancer. Jennifer, however, is certain that cancer is just one chapter in the story of her life. And there’s a lot of book left to write.
[Read the full article]
In the lush foothills south of Calgary, with the Rockies towering at her doorstep and her husband, rescue dogs, and horses at her side, Jennifer Nielsen is planning to live a good long time. At 56, she can easily picture herself still strong and vibrant at 90. There’s only one thing standing in her way: a rare, aggressive form of biliary tract cancer. Jennifer, however, is certain that cancer is just one chapter in the story of her life. And there’s a lot of book left to write.
[Read the full article]
November 21, 2024
[YorkRegion.com] Cancer patient’s victory over meds highlights battle over what drugs are covered under OHIP
A Newmarket woman suffering from a rare cancer is thrilled the provincial government has finally agreed to pay for her needed medication.
Heather Trombley is also keeping her fingers crossed that OHIP will soon cover everyone needing the drug, or at least approve coverage on a case-by-case basis.
In June 2022, Trombley was diagnosed with intrahepatic cholangiocarcinoma cancer, or bile duct cancer. About 400 Canadians are diagnosed every year.
[Read the full article]
A Newmarket woman suffering from a rare cancer is thrilled the provincial government has finally agreed to pay for her needed medication.
Heather Trombley is also keeping her fingers crossed that OHIP will soon cover everyone needing the drug, or at least approve coverage on a case-by-case basis.
In June 2022, Trombley was diagnosed with intrahepatic cholangiocarcinoma cancer, or bile duct cancer. About 400 Canadians are diagnosed every year.
[Read the full article]
November 13, 2024
[CTV News] Kitchener, Ont. woman with incurable cancer dies, fight continues to get provincial funding for expensive drug treatment
The fight to save the life of a young Kitchener, Ont. woman has come to a sad end.
Noor Ayesha died Sunday after battling the rare and deadly cholangiocarcinoma, better known as bile duct cancer.
The 26-year-old gave birth in February 2023, shortly after her Stage 4 diagnosis. Ayesha had hoped to extend her life so she could spend as much time as possible with her baby daughter. A drug, called Pemigatinib and sold under the brand name Pemazyre, was key to achieving that.
[Read the full article]
The fight to save the life of a young Kitchener, Ont. woman has come to a sad end.
Noor Ayesha died Sunday after battling the rare and deadly cholangiocarcinoma, better known as bile duct cancer.
The 26-year-old gave birth in February 2023, shortly after her Stage 4 diagnosis. Ayesha had hoped to extend her life so she could spend as much time as possible with her baby daughter. A drug, called Pemigatinib and sold under the brand name Pemazyre, was key to achieving that.
[Read the full article]
November 6, 2024
[CTV News] Promising treatment gives fresh hope to patients with rare, deadly cancer
There is fresh hope for patients with a rare, deadly form of cancer most commonly found in younger adults.
Some Albertans are part of the fight for approval of a promising new treatment.
Golfing and planning visits with family and friends were not possible while Jennifer Nielsen was going through chemotherapy.
But that changed when she started a new treatment in September.
[Read the full article]
There is fresh hope for patients with a rare, deadly form of cancer most commonly found in younger adults.
Some Albertans are part of the fight for approval of a promising new treatment.
Golfing and planning visits with family and friends were not possible while Jennifer Nielsen was going through chemotherapy.
But that changed when she started a new treatment in September.
[Read the full article]
October 27, 2024
Are you a locally advanced or metastatic biliary tract cancer patient who has received or is receiving Pemazyre (Pemigatinib)?
If so, we really need your help!
Pemazyre (pemigatinib) is currently under a funding review in Canada for the treatment of locally advanced unresectable or metastatic (stage IV) biliary tract cancer.
Cholangio-Hepatocellular Carcinoma Canada (CHCC) is leading a patient evidence re-submission for this first line targeted treatment of adult patients diagnosed with locally advanced unresectable or metastatic biliary tract cancer and who have the FGFR2 fusion mutation (biomarker).
We are looking for biliary tract cancer patients (or their caregivers) with firsthand experience with this therapy, who are willing to share their valuable story via phone or Zoom. The patient’s perspective will help to inform our patient input submission and provide the expert committees in Canada with this important insight as they prepare to issue their funding recommendation for this drug in Canada.
The patients (or caregivers) who participate in the interview process will have their privacy and confidentiality respected and maintained at all times. Their input will be completely anonymized in the submission. The telephone interview will last approximately 60 minutes and while there is no guarantee, it may help to get this drug funded throughout Canada.
Patients and caregivers may consent to have their contact information (name, phone # and email address) sent to Brenda Clayton, and, in turn, the patient/caregiver will be contacted with an appointment time and date for participation in the telephone interview.
Alternatively, the patient/caregiver may contact Brenda directly ASAP to advise of their willingness to participate in a telephone or Zoom interview to help form the patient input submission to make a meaningful impact:
Brenda Clayton, pemazyre@mychcc.ca; local: 403-701-7017 or toll free: 1-877-694-0314
Please contact Brenda ASAP to schedule the phone interview.
Cholangio-Hepatocellular Carcinoma Canada (CHCC) is leading a patient evidence re-submission for this first line targeted treatment of adult patients diagnosed with locally advanced unresectable or metastatic biliary tract cancer and who have the FGFR2 fusion mutation (biomarker).
We are looking for biliary tract cancer patients (or their caregivers) with firsthand experience with this therapy, who are willing to share their valuable story via phone or Zoom. The patient’s perspective will help to inform our patient input submission and provide the expert committees in Canada with this important insight as they prepare to issue their funding recommendation for this drug in Canada.
The patients (or caregivers) who participate in the interview process will have their privacy and confidentiality respected and maintained at all times. Their input will be completely anonymized in the submission. The telephone interview will last approximately 60 minutes and while there is no guarantee, it may help to get this drug funded throughout Canada.
Patients and caregivers may consent to have their contact information (name, phone # and email address) sent to Brenda Clayton, and, in turn, the patient/caregiver will be contacted with an appointment time and date for participation in the telephone interview.
Alternatively, the patient/caregiver may contact Brenda directly ASAP to advise of their willingness to participate in a telephone or Zoom interview to help form the patient input submission to make a meaningful impact:
Brenda Clayton, pemazyre@mychcc.ca; local: 403-701-7017 or toll free: 1-877-694-0314
Please contact Brenda ASAP to schedule the phone interview.
Thank you for making a difference in the lives of biliary tract cancer patients and their families!
We look forward to hearing from you.
We look forward to hearing from you.
[Contact us]
October 10, 2024
[CHCH-TV] Costly drugs push man with cancer to apply for medically assisted death
An Ontario family says they are at an unimaginable crossroads – pay $40,000 a month for medication, or be faced with their loved ones’ death.
The family says a drug could prolong Ted Sewerynek’s life but it’s not funded in this province and time is running out.
[Read the full article]
An Ontario family says they are at an unimaginable crossroads – pay $40,000 a month for medication, or be faced with their loved ones’ death.
The family says a drug could prolong Ted Sewerynek’s life but it’s not funded in this province and time is running out.
[Read the full article]
September 24, 2024
[Yahoo!Life] Ontario mother with rare cancer seeks $15,000 a month treatment: 'I want a chance to do more'
Noor Ayesha was hopeful when she learned she was pregnant for the second time in May 2022. Her first child, a daughter, had been born prematurely at seven months and lived for just nine hours — leaving Ayesha and her family heartbroken. Despite her grief, she was optimistic that everything would go smoothly for her second pregnancy. However five months later, she was rushed to a hospital in Kitchener, Ont. with intense abdominal pain.
[Read the full article]
Noor Ayesha was hopeful when she learned she was pregnant for the second time in May 2022. Her first child, a daughter, had been born prematurely at seven months and lived for just nine hours — leaving Ayesha and her family heartbroken. Despite her grief, she was optimistic that everything would go smoothly for her second pregnancy. However five months later, she was rushed to a hospital in Kitchener, Ont. with intense abdominal pain.
[Read the full article]
August 6, 2024
[CCA] CADTH recommends public drug plans reimburse Pembrolizumab (Keytruda), if certain conditions are met
Pembrolizumab (Keytruda), a checkpoint immune inhibitor, has been approved for first line therapy in combination with gem/cis (chemotherapy) with locally advanced metastatic or unresectable biliary tract carcinoma (BTC). (This is an alternative to gem/cis/durva.) This can only be ordered by physicians with expertise in treating BTC.
Attached is the full recommendation.
[Read the CADTH document]
Pembrolizumab (Keytruda), a checkpoint immune inhibitor, has been approved for first line therapy in combination with gem/cis (chemotherapy) with locally advanced metastatic or unresectable biliary tract carcinoma (BTC). (This is an alternative to gem/cis/durva.) This can only be ordered by physicians with expertise in treating BTC.
Attached is the full recommendation.
[Read the CADTH document]
July 31, 2024
[CCA] Health Canada NOC for two indications of TIBSOVO (ivosidenib)
Good news for cholangiocarcinoma patients. Another second line targeted therapy has been approved by Health Canada.
Servier Canada received the notice of compliance (NOC) from Health Canada for two indications of TIBSOVO (ivosidenib) on July 19, 2024. These indications are to treat IDH1 mutation with acute myeloid leukemia (AML) and metastatic cholangiocarcinoma. The company is currently securing the stock product in Canada. Once that is done, they are planning to provide a patient support program once ivosidenib (TIBSOVO) is commercially available.
[Read the Health Canada document]
Good news for cholangiocarcinoma patients. Another second line targeted therapy has been approved by Health Canada.
Servier Canada received the notice of compliance (NOC) from Health Canada for two indications of TIBSOVO (ivosidenib) on July 19, 2024. These indications are to treat IDH1 mutation with acute myeloid leukemia (AML) and metastatic cholangiocarcinoma. The company is currently securing the stock product in Canada. Once that is done, they are planning to provide a patient support program once ivosidenib (TIBSOVO) is commercially available.
[Read the Health Canada document]
July 28, 2024
World Hepatitis Day is July 28. Hepatitis is the leading cause of liver cancer. As well as the leading cause of liver cancer, hepatitis (especially Hepatitis B and C) is a common cause for cirrhosis of the liver and other viral hepatitis-related deaths. According to the World Health Organization (WHO), 354 million people globally live with Hepatitis B or C. Vaccination programs are available for Hepatitis A and B. There is no vaccination presently for Hepatitis C.
The colours for hepatitis awareness are green (hepatitis B), yellow and red (hepatitis C), and purple and yellow (autoimmune hepatitis).
Reference: World Health Organization (2023). Retrieved from www.who.int.
The colours for hepatitis awareness are green (hepatitis B), yellow and red (hepatitis C), and purple and yellow (autoimmune hepatitis).
Reference: World Health Organization (2023). Retrieved from www.who.int.
July 23, 2024
[CTV News] Kitchener woman hopes Ont. follows other provinces in covering rare cancer drug
A 25-year-old Kitchener, Ont. woman is continuing the fight of her life.
As Noor Ayesha battles a rare and aggressive form of cancer, she is pushing the province to fund an expensive drug, which could extend her life.
She has seen improvements in her health since first sharing her story with CTV News.
[Read the full article]
A 25-year-old Kitchener, Ont. woman is continuing the fight of her life.
As Noor Ayesha battles a rare and aggressive form of cancer, she is pushing the province to fund an expensive drug, which could extend her life.
She has seen improvements in her health since first sharing her story with CTV News.
[Read the full article]
July 23, 2024
The Green Party's Mike Morrice, M.P. for Kitchener Centre, ON, and Minister of Health Mark Holland discuss coverage of Pemigatinib (Pemazyre), a therapy used to treat cholangiocarcinoma (bile duct cancer).
Sitting No. 320 House of Commons. West Block - Chamber. May 29, 2024. 14:00 - 23:50.
Sitting No. 320 House of Commons. West Block - Chamber. May 29, 2024. 14:00 - 23:50.
June 20, 2024
Dr. Faisal M. Khan was kind enough to hold a Zoom meeting with CHCC to discuss biomarkers and their connection to cholangiocarcinoma. A video of the meeting is available below and on our Youtube channel.
Dr. Faisal M. Khan is a Professor at the University of Calgary. Dr. Khan is co-founder and CEO of OncoHelix Inc., an organization that specializes in providing esoteric cancer genomic and immunology testing.
Dr. Faisal M. Khan is a Professor at the University of Calgary. Dr. Khan is co-founder and CEO of OncoHelix Inc., an organization that specializes in providing esoteric cancer genomic and immunology testing.
June 13, 2024
June 13 is Global Fatty Liver Day. On this day, buildings across Canada are lit green to raise awareness about fatty liver disease.
June 13, 2024
[CTV News] Alberta's coverage of new treatment for rare cancer providing hope for patients
A new dad from the Calgary area is feeling hopeful after the Government of Alberta agreed to cover the cost of a new cancer treatment that might improve his chances of seeing his daughter grow up.
Bile duct cancer, or cholangiocarcinoma (CCA), is a rare, aggressive cancer that was only previously treated in Alberta by one drug.
"I’m very excited. It draws out my time and hopefully something else comes along in that time," said Chris Dyment, who was diagnosed with bile duct cancer in April 2023.
[Read the full article]
A new dad from the Calgary area is feeling hopeful after the Government of Alberta agreed to cover the cost of a new cancer treatment that might improve his chances of seeing his daughter grow up.
Bile duct cancer, or cholangiocarcinoma (CCA), is a rare, aggressive cancer that was only previously treated in Alberta by one drug.
"I’m very excited. It draws out my time and hopefully something else comes along in that time," said Chris Dyment, who was diagnosed with bile duct cancer in April 2023.
[Read the full article]
June 5, 2024
[CFJC Today] Kamloops woman with stage 4 bile duct cancer pushing for coverage of expensive treatment
A Kamloops woman is hoping the province will make an exemption to ensure the steep cost of her cancer care medication is covered.
Kenda Brown is one of a small number of people in Canada with stage four cholangiocarcinoma, a form of bile duct cancer. She was diagnosed with the rare cancer a year-and-a-half ago.
“They usually give you six months to a year, once you’re diagnosed,” she explains, saying at this stage, the cancer has also spread throughout her liver and lungs.
[Read the full article]
A Kamloops woman is hoping the province will make an exemption to ensure the steep cost of her cancer care medication is covered.
Kenda Brown is one of a small number of people in Canada with stage four cholangiocarcinoma, a form of bile duct cancer. She was diagnosed with the rare cancer a year-and-a-half ago.
“They usually give you six months to a year, once you’re diagnosed,” she explains, saying at this stage, the cancer has also spread throughout her liver and lungs.
[Read the full article]
May 28, 2024
[CTV News] Kitchener, Ont. woman with incurable cancer pushing province to cover rare cancer drug
A Kitchener, Ont. woman and her family are pushing the provincial government to fund a rare cancer treatment.
Noor Ayesha, 25, is a new mother but she’s facing a greater challenge than motherhood.
She has been diagnosed with cholangiocarcinoma, a rare form of cancer that originates in the bile ducts of the liver.
[Read the full article]
A Kitchener, Ont. woman and her family are pushing the provincial government to fund a rare cancer treatment.
Noor Ayesha, 25, is a new mother but she’s facing a greater challenge than motherhood.
She has been diagnosed with cholangiocarcinoma, a rare form of cancer that originates in the bile ducts of the liver.
[Read the full article]
April 19, 2024
World Liver Day is observed every year on April 19. Facilities across Canada lit up green. This is a day to promote global health awareness about the importance of liver health and early detection of liver diseases.
March 28, 2024
[CTV News] 'This has to change': New dad, grieving mom fighting for Alberta to cover rare cancer treatment
A new dad from the Calgary area is pressing the province to fund a new cancer treatment that might improve his chances of seeing his daughter grow up.
Chris Dyment was diagnosed with bile duct cancer in April 2023 and after 12 rounds of chemotherapy, his treatment will soon end.
[Read the full article]
A new dad from the Calgary area is pressing the province to fund a new cancer treatment that might improve his chances of seeing his daughter grow up.
Chris Dyment was diagnosed with bile duct cancer in April 2023 and after 12 rounds of chemotherapy, his treatment will soon end.
[Read the full article]
February 15, 2024
On February 15, 2024, structures across Canada were lit green to recognize World Cholangiocarcinoma Day, and raise awareness about cholangiocarcinoma.
Thank You To Our Sponsors!
Disclaimer: The information on this website is for educational purposes only. Please consult your doctor for professional medical advice.
©2024 Cholangio-Hepatocellular Carcinoma Canada
Charitable Registration Number 709631014 RR 0001
©2024 Cholangio-Hepatocellular Carcinoma Canada
Charitable Registration Number 709631014 RR 0001