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!
I keep hitting back luck - so hard right now to stay positive.
Ovarian 3C first surgery aborted. Carbo Taxol didn't work. Weekly Taxol 20% chance of working. 2nd opinion today -they can't do the surgery because it's on my small bowel- too hard to operate safely. Can't live w/o a small bowel apparently. Anyone else in these shoes? How do you cope with the endless bad news? Thanks.
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@BellaDonna1959
Sorry to hear your news. Have you reached out to your team regarding the despair you are feeling? Perhaps they can set you up with someone to talk to.
I, for one, have faith in my team, keep looking ahead while being realistic and planning should things not work out. I take it one day at a time, enjoy every day for what it is and who I have in my life.
I am not sure if you read my update but I don't have a clear picture currently other than I have to take Letrozole as it is my only option currently for if I don't, my kidneys will stop functioning. So, despite the side effects of it and who knows the outcome. I have no idea what the percentages are for the efficacy of the drug.....nor do I want to know.
I am awaiting to see if they can do surgery or not (as my recurrence is in multiple areas), whether there are any trials for my type of cancer and if I am even a candidate for them.
I thank my lucky stars every day for every moment I have with my 2 sons, husband, family and friends/supports. They are what propel me forward as I show my brave face to all of them.
Not sure if that helps or not but that is how I function daily.0 -
Thanks. I have certainly been positive with the family so far, but today just set me back quite a bit - I will probably bounce back tomorrow though. Thanks for the comments. Every day is precious that's for sure.0
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@BellaDonna1959
We all navigate and process things differently as we go through the progressions of our own unique journey with our disease.
It is good to remember that your team is there for you and can offer you supports/resources should you need them. All you have to do is reach out and ask. There are some things/thoughts that are difficult to share with family but that a professional is better able to receive and assist you through.
We are all allowed to have our down days or "dark" thoughts, it is important to be able to recognize when these thoughts are becoming all consuming so that your team can direct you as to either medications to assist or resources to help you navigate through it. It is very difficult to be "positive" all the time.
Having some hobbies to divert your attention or journalling some of your thoughts may help. Even if you journal then burn them can be very therapeutic.
Hopefully you had a good night's sleep and if you aren't sleeping, tell your team. Lack of sleep does not help us in any way.
Wishing you a better day today and in the days to come.💕0 -
Thanks.0
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@BellaDonna1959
How are you doing this week?0 -
colonoscopy clear so they are adding avastin soon. trying to stay positive. Thanks for reaching out.0
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@BellaDonna1959
Glad to hear you are feeling more hopeful (?) this week. Not sure if that would be a correct word for this situation.
As for the small bowel comment, no you can't live without it. I am experiencing issues in the same area and the risks don't outweigh the benefits to do anything about it. As one doctor indicated, some of the risks to operate in this area include bowel perforation and high rate of infection. So, it is of my opinion, it would have to be very very serious before they would even explore doing anything in this area.
It is one day at a time, glad to hear you will on something soon and as I continue to do.....have faith in your team and ask any questions you have along the way.
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Thanks. What regime are you on now?0
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@BellaDonna1959
Good morning. Currently the only treatment available to me is Letrozole. I get body aches from it but they are manageable.
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Is that chemo or immunotherapy?
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@BellaDonna1959
Actually neither. It ia classified as an aromatase inhibitor.0 -
Can you tell me more about that and how/why they prescribed it for you - I would like to know if I would qualify down the road too. I am ovarian 3C high grade serous cancer.0
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@BellaDonna1959
I am.low grade serous stage 3C, recurrent and palliative to date.
LGSC does not responsive to chemo upon recurrence and is why it is off the table.
In basic terms, it is supposed to starve the tumor and either stop/shrink, stop/stabilize or there will be no effect.
LGSC affects less than 10% of the population and is why there isn't as much research being conducted compared to HGSC.
The other piece they are looking at are which genetic mutations in particular are present to see if there is a clinical trial that I may qualify for. These types of mutations affect what is called a MEK pathway. Some can be classified as a KRAS or BRAF mutation and could even be what they call a wild-type. Those answers I don't know.
I do know that for HGSC that you have, there is a lot of research, options and many ladies (from what I have read) have many episodes of recurrence and try anything "in the toolbox".
Does this help any?
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@BellaDonna1959
I also want to mention that LGSC typically is slow growing and has a better overall survival rate than HGSC. In my case, it isn't acting that way and is being more aggressive for whatever reason.
And one correction.....that is a MAPk pathway not MEK.1 -
Thanks for the info. Seems we have similar challengers. Hope they keep finding answers for you and me both.0
