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FOLR 1 testing for Elahere
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@Strongwoman
Thank you for passing my question along to admin. I appreciate it. I'm hoping to get more clarification from a provider in Bellingham, WA on Monday.
Also, a big thanks for all you do for this forum!!0 -
@GloHo Your welcome. Who knows it may also help someone else on this forum either now or in the future. If you would like to share your info/clarification you obtain on Monday, that would be fantastic!
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@Strongwoman
Absolutely, I'd be more than happy to share any information I find out this week.0 -
Hi @hope2022,
I have inquired about your questions and I hope this reaches you before your appointment.
As far as we know, this testing is not available in Canada (which, from your message above, you already knew). We have heard that a woman from our community has had testing done at the Mayo Clinic.
The best place to start is to talk with your healthcare team to ensure that this is a good option for you. If it is, you can reach out to any American hospital that will accept Canadian patients (like the Mayo Clinic for example).
Something else you could speak to your team about is Health Canada’s Special Access Program (SAP). From what we can tell, physicians fill out a request to Health Canada to have their patient granted special access to drugs not available in Canada. Presumably Elahere would be such an example, however at this time we can’t be 100% sure. My colleague Alison Ross has reached out to the SAP directly and is awaiting information back.
If you'd like to reach out to Alison to chat more about this, you can reach her by email at [email protected] or you can call her at: 1 (877) 413-7970 ext. 2370 -
@mfallis
Thanks so much for your reply. It was my oncologist at the BCCA that suggested this drug as a possible option for me.
I have spoken to the cancer center in Bellingham, WA that will facilitate the testing process. The first step is meeting with a doctor from the center, so I am currently waiting for an appointment time to start the process.
I was aware of Canada's Special Access Program and will talk to my doctor about it when I see her next week.
The first step is just getting tested to see if I am FRa positive and have a high enough expression to be eligible for the drug.
Thank you again for looking into this for me, I really appreciate it.1 -
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@Strongwoman
Thanks so much.. I did see the new discussion posted. I decided to go through a larger cancer centre in Seattle, as opposed to the smaller center in Bellingham. Currently waiting to see if a I am even eligible to access the test as a Canadian resident. Always a waiting game with this disease, isn't it???
That was a lovely picture of you and your boys that you posted!!
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