A number of members have mentioned that they also live in Canada. I thought it might be helpful to have a central discussion thread where we could all share Canadian-specific information and experiences.
I live in Winnipeg and if anyone has any myeloma-related questions specific to my city, I'll be happy to help:
RECENT NEWS
November 18, 2015 - Daratumumab (Darzalex) accepted for review by Health Canada: https://myelomabeacon.org/forum/darzalex-daratumumab-review-canada-t6369.html
January 21, 2016 - Carfilzomib (Kyprolis) approved by Health Canada in combination with Revlimid (lenalidomide) and dexamethasone in patients who have had 1 to 3 prior lines of therapy:
https://myelomabeacon.org/forum/kyprolis-approved-in-canada-t6649.html
February 16, 2016: Ixazomib (Ninlaro) has been accepted for priority review by Health Canada: https://myelomabeacon.org/forum/ninlaro-ixazomib-canada-t6792.html
Forums
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Canada & multiple myeloma
Thanks Irene! . I like that you posted the latest news about daratumumab, Kyprolis, and Ninlaro! Good that you have set up a thread also.
I was in Winnipeg twice for myeloma-related reasons. Once was for a national patient seminar back in 2012 (I think). Also last November for a national 'Advocacy Day'. One of the speakers last November was a representative of Cancer Care Manitoba. He gave an overview of cancer care in Manitoba. Apparently, Manitoba is quite transparent as to the process of approval of a new cancer drug. You might want to check into that.
I've also visited Winnipeg in 2014 for a national Embroidery Association of Canada seminar with my step-Mom and my father. Hence, I have toured your beautiful city too, and enjoyed seeing the Legislature, the long oak lined streets, the older part of the city with all of the buildings built back in the 1920's. My husband and I, on the myeloma seminar trip, also went to the 'Forks' where two rivers meet, took a boat tour, and visited the marketplace near there. I have never seen so many varieties of honey for sale! I live in Calgary, and what a pleasant surprise to visit your city, three times in the last five years. I had never been there before!
I think that many Canadians do visit the Beacon online. Some of what we experience as myeloma patients is quite universal to all, but of course we do have our own national concerns too.
I was in Winnipeg twice for myeloma-related reasons. Once was for a national patient seminar back in 2012 (I think). Also last November for a national 'Advocacy Day'. One of the speakers last November was a representative of Cancer Care Manitoba. He gave an overview of cancer care in Manitoba. Apparently, Manitoba is quite transparent as to the process of approval of a new cancer drug. You might want to check into that.
I've also visited Winnipeg in 2014 for a national Embroidery Association of Canada seminar with my step-Mom and my father. Hence, I have toured your beautiful city too, and enjoyed seeing the Legislature, the long oak lined streets, the older part of the city with all of the buildings built back in the 1920's. My husband and I, on the myeloma seminar trip, also went to the 'Forks' where two rivers meet, took a boat tour, and visited the marketplace near there. I have never seen so many varieties of honey for sale! I live in Calgary, and what a pleasant surprise to visit your city, three times in the last five years. I had never been there before!
I think that many Canadians do visit the Beacon online. Some of what we experience as myeloma patients is quite universal to all, but of course we do have our own national concerns too.
Last edited by Nancy Shamanna on Fri Feb 26, 2016 9:28 am, edited 1 time in total.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Canada & multiple myeloma
Hi Nancy!
I'm glad you enjoyed your visits. I grew up in Winnipeg but lived several years each in Montreal and Toronto and then 6 years in Calgary before returning to Winnipeg. In Calgary my backyard backed onto a green space which led to Fishcreek Park. I particularly enjoyed the summers living there.
I do notice differences when I'm reading about American experiences with myeloma treatment. For example, my induction treatment was Velcade and dex only. It's my impression (and maybe it's wrong) that Revlimid in Manitoba is reserved for those who have had a stem cell transplant.
When I was diagnosed I had a skeletal survey which showed no lesions. I hear Americans talk about their PET scans, so last February I asked if I would have a PET scan to establish a base line of bone damage. My doctor said the scan wouldn't be approved by Manitoba Health because whatever the scan showed wouldn't change my treatment. I did have a CT scan in June, but that was only a result of my complaining of a shoulder blade pain that started up a couple of months prior.
I am also disappointed at the lack of clinical trials available to me here.
The myeloma support group in Winnipeg is really small, with only 2 to 8 people showing up for a monthly meeting.
I'm glad you enjoyed your visits. I grew up in Winnipeg but lived several years each in Montreal and Toronto and then 6 years in Calgary before returning to Winnipeg. In Calgary my backyard backed onto a green space which led to Fishcreek Park. I particularly enjoyed the summers living there.
I do notice differences when I'm reading about American experiences with myeloma treatment. For example, my induction treatment was Velcade and dex only. It's my impression (and maybe it's wrong) that Revlimid in Manitoba is reserved for those who have had a stem cell transplant.
When I was diagnosed I had a skeletal survey which showed no lesions. I hear Americans talk about their PET scans, so last February I asked if I would have a PET scan to establish a base line of bone damage. My doctor said the scan wouldn't be approved by Manitoba Health because whatever the scan showed wouldn't change my treatment. I did have a CT scan in June, but that was only a result of my complaining of a shoulder blade pain that started up a couple of months prior.
I am also disappointed at the lack of clinical trials available to me here.
The myeloma support group in Winnipeg is really small, with only 2 to 8 people showing up for a monthly meeting.
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Canada & multiple myeloma
Ya, each province has it's own criteria for covering PET scans; Quebec approves PET scans quite easily in cases involving cancer, other provinces do not. Here in Ontario, your haematologist must write a request to the Ministry of Health for approval for PET scan use in myeloma with some good reasons why it is needed.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Canada & multiple myeloma
Hi Irene, I checked online and Revlimid was approved for second line treatment in Manitoba on September 9, 2010. Also, Pomalyst was approved in Manitoba on April 23, 2015 (Government of Manitoba press release).
LM, thanks for your national info also. We can always learn more about our own country!
I wanted to say that if you want some sort of base line scan, apart from annual skeletal surveys, you could ask your oncologist or your family doctor for a DEXA baseline report. This scan will give a T-score and Z-score, as well as a BMD score in gm/cm squared. Basically, this is a bone density scan. I had one done in 2008 at the request of my previous family doctor (who has since retired), since at my age and being female, osteoporosis can be a problem for many reasons. That scan showed that I had a high risk of fractures within the next ten years. It was one of the first indications of myeloma.
After all of the treatments I have had, and since I do weight bearing exercise such as walking, a more recent scan actually showed improvement in that area. I think I can get those every two years, unless I need one sooner. I also think that if I needed it for any urgent reason, I could get an MRI or PET scan, but that has not been the case recently.
LM, thanks for your national info also. We can always learn more about our own country!
I wanted to say that if you want some sort of base line scan, apart from annual skeletal surveys, you could ask your oncologist or your family doctor for a DEXA baseline report. This scan will give a T-score and Z-score, as well as a BMD score in gm/cm squared. Basically, this is a bone density scan. I had one done in 2008 at the request of my previous family doctor (who has since retired), since at my age and being female, osteoporosis can be a problem for many reasons. That scan showed that I had a high risk of fractures within the next ten years. It was one of the first indications of myeloma.
After all of the treatments I have had, and since I do weight bearing exercise such as walking, a more recent scan actually showed improvement in that area. I think I can get those every two years, unless I need one sooner. I also think that if I needed it for any urgent reason, I could get an MRI or PET scan, but that has not been the case recently.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Canada & multiple myeloma
Nancy, I searched the Manitoba press releases and there was nothing for Pomalyst. In fact there were only 6 news releases in all related to myeloma and the last one was in 2011. Pomalyst was approved in New Brunswick on March 23, 2015.
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Canada & multiple myeloma
Irene, look down the page under the new drugs added to the MB pharmacare program. The press release is at this link.
April 23, 2015
Manitoba Government Adding 69 New Medications to Pharmacare Program
Three New Drugs to Support Patients Living with Hepatitis C: Minister Blady
Three drugs to support people living with hepatitis C are among 69 new drugs now covered under Manitoba’s pharmacare program, Health Minister Sharon Blady announced today.
“Manitobans need access to the latest treatments to manage their illnesses effectively,” said Minister Blady. “Adding Sovaldi, Harvoni and Ibavyr to the provincial formulary will help hepatitis C patients get the coverage they need.”
Hepatitis C is a liver disease caused by a virus spread through blood-to-blood contact.
Some of the other new drugs added to the formulary include:
“This initiative brings provincial governments together to negotiate better prices on both brand name and generic prescription drugs, making them more affordable in the long term,” said Minister Blady. “This helps us better support Manitoba families and ensure equal access to new and much-needed treatments.”
Of the 69 drugs added, 49 are generic medications. The minister noted these additions are expected to save Manitoba families $4.5 million a year. Coverage for the new drugs came into effect on Apr. 20.
Pharmacare is a universal, comprehensive prescription drug program for any Manitoban with benefits, which is based on family income. It covers 100 per cent of eligible drug costs once the income-based deductible is reached, regardless of medical condition or age.
Over the last 16 years, approximately 4,400 new drugs, including those that treat diabetes, cancer, schizophrenia and arthritis, have been added to Manitoba’s Pharmacare Program.
April 23, 2015
Manitoba Government Adding 69 New Medications to Pharmacare Program
Three New Drugs to Support Patients Living with Hepatitis C: Minister Blady
Three drugs to support people living with hepatitis C are among 69 new drugs now covered under Manitoba’s pharmacare program, Health Minister Sharon Blady announced today.
“Manitobans need access to the latest treatments to manage their illnesses effectively,” said Minister Blady. “Adding Sovaldi, Harvoni and Ibavyr to the provincial formulary will help hepatitis C patients get the coverage they need.”
Hepatitis C is a liver disease caused by a virus spread through blood-to-blood contact.
Some of the other new drugs added to the formulary include:
- Adempas for inoperable chronic thromboembolic pulmonary hypertension, when blood vessels are blocked or narrowed with recurring blood clots;
- Breo, Ellipta and Combivent Respimat for chronic obstructive pulmonary disease, when there is poor airflow in the lungs;
- three new strengths of Innohep for thromboembolism disorders, which involve blood clots;
- Dovobet Gel for psoriasis, a skin condition;
- Jetrea for symptomatic vitreomacular adhesion, a disease that affects the eye and vision; and
- Pomalyst for multiple myeloma, a type of cancer.
“This initiative brings provincial governments together to negotiate better prices on both brand name and generic prescription drugs, making them more affordable in the long term,” said Minister Blady. “This helps us better support Manitoba families and ensure equal access to new and much-needed treatments.”
Of the 69 drugs added, 49 are generic medications. The minister noted these additions are expected to save Manitoba families $4.5 million a year. Coverage for the new drugs came into effect on Apr. 20.
Pharmacare is a universal, comprehensive prescription drug program for any Manitoban with benefits, which is based on family income. It covers 100 per cent of eligible drug costs once the income-based deductible is reached, regardless of medical condition or age.
Over the last 16 years, approximately 4,400 new drugs, including those that treat diabetes, cancer, schizophrenia and arthritis, have been added to Manitoba’s Pharmacare Program.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Canada & multiple myeloma
Thank you, Nancy!
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Canada & multiple myeloma
I just thought of another difference with the U.S. In Canada I think only two provinces provide for viewing lab tests online, Ontario and B.C.
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Canada & multiple myeloma
Ontario has its Trillium program, which is a deductible-based cost-sharing system. The deductible is based on household income less any insurance plans. Once patients turn 65 many drugs are either free or at very minimal cost.
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SK1 - Name: SK
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: June 2015
- Age at diagnosis: 62