Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Community Champion. 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 Community Champion. 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).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Gathering information on Targeted therapies such as MTOR, PARP, CDK and Monoclonal Antibodies in Can
Hi Fellow Teal Sisters
I have had a lot of bad luck on my journey with stage 3C inoperable, incurable, platinum-resistant cancer, so I am constantly researching for hopeful options for myself. If you have had a discussion about any of the targeted therapies see definitions here: https://www.cancercouncil.com.au/cancer-information/cancer-treatment/targeted-therapy/types-of-targeted-therapy/ please share what you learned and what your oncologist told you about their 'allowed' use in Canada (I am in Ontario). Did your oncologist prescribe some of these directly or only put you on an approved trial? I read about a doctor in the USA (Dr. William Li) who did a deep dive on his mom's advanced endometrial cancer tumor type, found a targeted treatment and got her to complete remission in months after 3 rounds of the treatment. Meanwhile, I am on weekly Avastin and Taxol - taking a weekly beating basically. It seems to be halting growth so far although my next CT scan and CA blood test are in 2 weeks, so we will see. As an end-user, I think to myself- they did the deep dive on my tumors and found a CDK and and NF1 mutation - how I would love a 3 - 6 months and done treatment instead of this long, drawn out process week after week waiting to see when it will stop helping me with lots of side-effects like blurry vision issues etc. I know that our responses to these targeted treatments are individual with no guarantees, but it just seems backwards to me. Why not try to 'cure' me in 3 months with a drug targeted to my mutations rather than week after week of 'maybe it will, maybe it won't' generic treatments? Is it all about the cost of these targeted drugs? Is it too dangerous to hope they pick the right drug (the cancer could spread in the meantime)? Anyhow, I will discuss it with my oncologist, but I'm always interested in the experiences of others in Canada to compare notes. If you did get one of the drugs in the cancercouncil article, was it a last resort treatment after others no longer worked? My oncologist got me on Avastin (bevacizumab) even though he told me directly he didn't think he could get it approved for me as I didn't exactly fit the 'approved' criteria. My private insurance foots most of the bill though - probably why he got it approved. Which tells me the rules are not cast in stone. However, it horrifies me that they may have said no and my cancer would have likely continued to spread and grow - how is that even an ethical possibility in Canada? Did the manufacturing drug company, OHIP or you pay for your targeted drugs? The rules and what treatments are/are not approved in Canada are constantly changing so I'm trying to keep up and advocate for myself. BTW - I am very happy to still be here - given 'months to live' in spring of 2022!
I have had a lot of bad luck on my journey with stage 3C inoperable, incurable, platinum-resistant cancer, so I am constantly researching for hopeful options for myself. If you have had a discussion about any of the targeted therapies see definitions here: https://www.cancercouncil.com.au/cancer-information/cancer-treatment/targeted-therapy/types-of-targeted-therapy/ please share what you learned and what your oncologist told you about their 'allowed' use in Canada (I am in Ontario). Did your oncologist prescribe some of these directly or only put you on an approved trial? I read about a doctor in the USA (Dr. William Li) who did a deep dive on his mom's advanced endometrial cancer tumor type, found a targeted treatment and got her to complete remission in months after 3 rounds of the treatment. Meanwhile, I am on weekly Avastin and Taxol - taking a weekly beating basically. It seems to be halting growth so far although my next CT scan and CA blood test are in 2 weeks, so we will see. As an end-user, I think to myself- they did the deep dive on my tumors and found a CDK and and NF1 mutation - how I would love a 3 - 6 months and done treatment instead of this long, drawn out process week after week waiting to see when it will stop helping me with lots of side-effects like blurry vision issues etc. I know that our responses to these targeted treatments are individual with no guarantees, but it just seems backwards to me. Why not try to 'cure' me in 3 months with a drug targeted to my mutations rather than week after week of 'maybe it will, maybe it won't' generic treatments? Is it all about the cost of these targeted drugs? Is it too dangerous to hope they pick the right drug (the cancer could spread in the meantime)? Anyhow, I will discuss it with my oncologist, but I'm always interested in the experiences of others in Canada to compare notes. If you did get one of the drugs in the cancercouncil article, was it a last resort treatment after others no longer worked? My oncologist got me on Avastin (bevacizumab) even though he told me directly he didn't think he could get it approved for me as I didn't exactly fit the 'approved' criteria. My private insurance foots most of the bill though - probably why he got it approved. Which tells me the rules are not cast in stone. However, it horrifies me that they may have said no and my cancer would have likely continued to spread and grow - how is that even an ethical possibility in Canada? Did the manufacturing drug company, OHIP or you pay for your targeted drugs? The rules and what treatments are/are not approved in Canada are constantly changing so I'm trying to keep up and advocate for myself. BTW - I am very happy to still be here - given 'months to live' in spring of 2022!
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@BellaDonna1959
You ask a lot of questions to which I do not believe there is any "one" answer to nor "one size fits all". Emotions can get all of us and understandably so while we go through the physical part of our journeys. I feel for you and everything you are going through.
I understand you are undergoing treatment and from you have wrote, you are having what the medical environment would say "success" with the current treatment you are on (absent a current CT scan as you indicated). It is understandable that you and many others including me would like a "speedier expited way of getting through treatment" but it is not the reality of it. Despite there being known treatments and outcomes to specific types of Ovarian Cancer there is no guarantee that your case, someone else's case or my own fits into that little box. Science is not as exact as you think and there are many factors, variants etc that can change it just that slight amount that will affect the outcome of "the known" or "median".
Some of this unfortunately comes down to something none of us actually want to admit....."money". It takes money for studies to happen to pay the people who are making these advances. It takes money for the drug companies to assist in trials and allow those trials to come to fruition and to meet the standards to qualify for them to go on. When trials or medications are "approved" and "covered" someone somewhere is paying for it and/or we all are in some way.
There is no guarantee at all that just because you go on a drug and/or trial that it is (a) the one for you (b) you won't be met with side effects mild or severe or (c) it will actually succeed and meet the expected outcome in each and every person that goes on it. It is just does not make sense medically. It is the hope and the greatly expected outcome but by no means a guarantee.
These health care professionals would love that should that be the case that everything was successful. I don't imagine for one minute that it is the top part of their job description that they took on that one of the things they look forward to is telling a cancer patient or anyone else terminal or otherwise this "I am sorry there are no more options and there is nothing more we can do for you." It is not a reality. They work hard at what they do and how they deliver those messages and it must weigh on them immensely when they have to have that conversation.
Medicine is not an exact science, is not the answer for everything and is definitely not always the outcome they want to achieve from it.
So many of our bodies can react differently (good or bad, positive or negative) to any ONE medication or in combination with another. Point in case, my latest "medical find" and the "reality". I was approved for a trial drug called Trametinib to be used in combination with my current medication Letrozole. Both are oral medications. I was on Trametinib for 2 wks and the side effects (mainly chemo acneic rash) was so severe for myself that I took myself off it before I spoke with my doctor. This side effect was and still is physically hurting (my face especially) that it is not worth it taking it compared to the quality of life I had prior to it. I want to go for a walk but can't as the wind will hurt it. Even a face mask hurts it and causes bleeding from it same with blowing my nose. I wanted the outcome to be better but it is not the reality of it. This drug is currently the ONLY other treatment out there known for LGSC besides Letrozole. If I can't take one and the other stops working, I am aware of trajectory I am on and where it leads. I don't want it to be that way but there is nothing I can do. My body does not like drugs period and I am thankful when it cooperates and has mild side effects that still give me quality of life to be in the present with my family.
I, personally, do not possess the information of "where to go to" in order to see if you qualify for one medication (trial or not) over another. I believe it is the medical professional that makes this decision based on a case to case basis.
I know none of this may give you the answers you want nor the desired outcome. It is hard to keep in mind all those other factors as we face our own cases, outcomes from treatment and mortality. The latter is the hardest of all for us to grasp, understand and accept (some never do).
If you have not already, speak to your team, speak to or ask to speak with a psychologist or social worker as they may be able to help you through this part of things. Although I am "steering my own ship", I have to face the fact that "there are some waters that are not navigable" and so I must tread in the ones that are.
I wish for you that your current treatment continues to work for you as indicated, side effects stay minimal and that your CT scan shows some stability/no new growth/ or minimal growth/shrinkage.
Take care0 -
Thanks - I appreciate your comments. One thing I've learned on this journey so far is advocating for myself gets results (like the deep dive on my tumors) and that the rules can be broken, so I'm always searching for all options, not just the ones my team decides to present to me. The tumor deep dive wasn't offered, even though it's so helpful. I found out about it and pushed for it. I will ask for and push for anything that might give me more time with my loved ones. I have come to terms with a possible early death and am not afraid of dying - death can be painless and peaceful these days quite easily. I am only afraid of missing out on the life I love and looked forward to - especially now I'm a grandma - and of being the cause of so much grief for my loved ones. A lot of interesting and useful facts have come to light due to learning about what others are doing/trying so I'm always gathering information to ask my oncologist about. I hope to get more responses to this post.0
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@BellaDonna1959
I'm much earlier on in my treatment journey than you are, but am avidly interested in the topic. I know that it is highly likely that I will be in some version of the difficult position that you are in right now re: access to medication in the maintenance/recurrence phase of this disease and am doing a lot of research on the different options.
Thank you for posting your question and for being a role model for self-advocacy.
I'm currently on round 2 of neo-adjuvant chemo prior to debulking surgery, and am planning on paying out of pocket for genomic testing of the surgical tissue samples so that I can get as much information as possible about the genetics, biomarkers etc prior to decision making after the post-surgery phase of chemo.
I will definitely post any information I find about clinical trials, new drugs and avenues for advocacy.
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Thanks Petra. Ask your oncologist if the Bio Diva study at Princess Margaret Hospital is still running -they will do the testing for you at no cost. They send your tumor samples to them and can meet with you on video chat- you may not need to travel there if out of province. The lead researcher is Dr. Oza. Good luck. Thanks for sharing any info you gather - it is appreciated.
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