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 ([email protected]).
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 ([email protected]).
Homologous Recombination Deficiency (HRD) Testing
I am BRCA negative. I have been told I have a 50% chance of benefitting from PARP inhibitors. I have been on Zejula for 4 months and it has been difficult to adjust to it. I am taking 3 other medications of offset side effects. I have been told HRD testing is what I need to know if I will actually benefit. Does anyone know where you can get this type of test in Canada. Thanks.
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@jmbarrhaven
I am HRD positive. For me the test was a requirement to qualify for the Olaparib clinical trial I was on two years ago. In order to assess that a piece of my original tumor tissue was used. So that was ordered up from PMH where my original surgery was done and where the tissue is stored, and then sent off to wherever for assessment. Your oncologist should be able to tell you how to go about getting the testing done, if, in fact, it can be done on request. I expect there is a cost associated though. Certainly any medical oncologist who is involved in clinical trials would know he process.0 -
Thanks for your input Fearless. Unfortunately my oncologist has not been very forthcoming with much information on anything. At the time I was advised to go on Zejula, I was told that I only had a 50% chance of it working. The genetic testing to confirm it would be at my expense. When I told them I was willing to pay, they backed off and just gave me a website. It was up to me to get the testing. When I went to the website, it was an American company that did limited testing in Canada. On further examination, they indicated that they only dealt with doctors. When I told my oncologist, she basically shrugged. The recent genetic webinar I participated in has reignited my interest in pursuing this. However, I don't know where to begin.0
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I talked to another oncologist yesterday. She said that currently you can only get HRD genetic testing in Canada as part of a research trial. She said it is a great frustration for oncologist in Canada that it is not generally available and very needed.0
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@jmbarrhaven
The advice from the second oncologist seems in line with my own experience getting tested. For me it was needed to qualify me for a clinical trial. I recall my own oncologist suggesting there were lots more out there with the HRD and knowing that would help them when prescribing treatment or considering trial candidates but that up until then (which was two years ago) the testing was not done routine. Unlike with the original approval for use of Olaprib, Zejula's sister drug, where you had to be BRCA positive, I've never heard of any prerequisite genetically related to Zejula. So at a loss for what your oncologist is suggesting.
Any of our current community been told anything similar to what jmbarrhaven has? Please comment if you have.0
