Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
FOLR 1 testing for Elahere
Options
Has anyone dealt with a US provider to get this testing? There is no mechanism in Canada to get access to this test as Elahere has not yet been approved here. My understanding is that you go through an International Patient Program at a US medical center and the test must be requested by a US provider only. Trying to navigate the US system as a Canadian is not very easy as I am finding out. Any information would be helpful, thanks.
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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 aross@ovariancanada.org 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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I have been reading about tumour testing through Foundation One and Clarity. Clarity also offers treatment decision support.Has anyone send tumour samples to these kinds of organizations? If so was it beneficial or a waste of money?0
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@flory I had samples of my tumor sent for testing through Foundation One. The sample gets sent to Boston and is analyzed by Roche. Once I proved my insurance did not cover the cost I was given the reduced rate of about $2500 ( yes I know its pricy) My oncologist recommended the testing right at the beginning as I have one of the more rare tumor types Clear cell. I would say that for me it was well worth the money as the test showed a mutation ( PIK3CA ) for which there is targeted treatment if I need it down the road. If you have any other questions don't hesitate to ask.
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@melissa I wanted to let you know that clear cell is an indicator for the BOUQUET trial as well specifically the biomarker you have. Check it out if you want. It is being done out of PMH0
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@Strongwoman I did read about the trial. In fact, I believe they have a poster of it in my drs office. I of course didn't remember to ask about it while I was there but I went online and it says it's for the recurrence phase and it said recruitment date closed aug 1st 2023? Is PMH Princess Margaret Hospital in TO?0
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@Strongwoman I forgot to say thank you for thinking of me for the trial. Perhaps recruitment dates are not set in stone. What about you? For your LGSOC?0
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@melissa I have been referred to PMH to see about the BOUQUET trial. Will gather info and see. Other than that I have no options left. The other 2 trials out there have me excluded due to my grade 4 toxicity to Trametinib last year.
I am definitely seeking something if I can. Last month my CA 125 climbed 44 points and this past month 48 points. So something is going on. I experience abdominal pain daily that is barely tolerable. It occurs no matter what I eat or drink. I am keeping my mouth shut at home for now as I don't want the holidays to be about that. Time to enjoy and 'just be' and face what is ahead in the New Year.
Thanks for asking and hoping one of those treatment options may be open....I always say apply/ask and go from there. The worst thing that can happen is they say 'no'. I believe in the BOUQUET trial there are 2 arms that you may be eligible for.
Prior to @GloHo posting her journey I would never have looked at it. She has inspired me to do so.
Truly wonderful ladies here. ❤️2 -
@Strongwoman it makes me sad to hear you are experiencing daily severe abdominal pain : ( I hope you and your team get this under control soon.
It must be very difficult to keep how you are feeling physically from your family. Putting them ahead of yourself so very selfless and not easy to do when something like this might make us want to talk and seek comfort from our loved ones.
I can imagine how this might weigh on you, I myself have not told my mother about my diagnosis as she suffers from severe anxiety and telling her would only unburden me, and harm her. The timing of my finishing chemo and my hair growing back mean that I will not see her this Christmas ( if only it was a month away) oh well such is life.
I'm hopeful that since your team referred you to those running the bouquet trial that they are still accepting people. My fingers and tightly crossed for you.
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Merry christmas/happy holidays everyone xo0
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@melissa Thank you and thank you for your kind words. I have been improving daily. Ports out. Watching what I eat still and still fatigue easily.
Yes, I am very determined to not have them fixating on this disease more than I feel they should. Christmas was quiet and different but.....as I kept reminding them we were together.
It is difficult to carry the load and not "unload". Please make sure you do. Whether that be here or in some other form. I am a private message away if you need to "dump" anytime. My shoulders are HUGE!!!! I am of course joking in thr physical sense of that statement. More like shrinking they are. 😉
Anyhow, you have one of those fortunate/unfortunate scenarios regarding your Mom and Christmas. I wish you peace within yourself and kindness as well. Take care of you!
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Thought I would check in with those seeking this option and how things are going and where things stand. Update us when you can.0
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@Strongwoman
I saw an oncologist in Seattle on January 3rd and he will facilitate the testing for FOLR1. I don't have any results yet.
He gave me some good information about treatments that I'll be asking my oncologist about on Tuesday when I see her. I don't think it will go anywhere, but worth asking.
Good luck with your appt about the trial!0 -
@hope2022 Thought I would check in with you. You mentioned an appt on Tuesday with your Oncologist. Was that this past Tues or the one coming up?
Hope you are doing well.
Take care0 -
@Strongwoman
Still waiting on test results from testing in the US. Thanks so much for checking in.0 -
Welcome @hope20220
