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).
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
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@bobby yes, the platform we use is not ideal to this kind of chat but we're working on improvements with the vendor for this year that should help. So in the meantime we just put up with the lag time between typing and seeing your comment and having to constantly refresh to to get new comments. So my apologies and thank you for trying to bear with us. How are you today?0
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Copy - I am fine as can be post recurrence one news and now two treatments in. Sunny but cool and windy here in GTA0
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@Strongwoman
thanks for articulating what I couldn't because I get the same issues. All I can say is thank goodness my husband has always been able to finish my sentences for me. As many of our membership here often say, it sure helps knowing you're not alone.1 -
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@Bobby how's the chemo going. Are you getting the same drugs as they used for primary treatment or something different?0
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yes - back to carbo/taxol. i was "quite responsive" per dr first time round in 2020 so hope is can knock it back for similar period again - tbc. would like it permanently knocked out out but dr's seem to dash those thoughts ...even though their are some on this site with that luck. hair starting to come out a bit earlier this time - had it cut shorter in preparation
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Hi all,
@Strongwoman amazing! Im off chemo two months now and I could not walk 10 k right now. About 5 is all I can do but can bike much further with my new e-bike! Now that is a life saver. Best investment I could have made this summer. I feel almost human again when I'm on it and I'm still getting exercise at a manageable pace.
@ToughAsTeal thoughts are with you
@Fearless_Moderatormy memory has been so poor I wondered if I was experiencing something else alongside chemo induced brain fog but this week I am actually seeing a real improvement. My biggest concern was my marked inability to use language at all. I knew what I wanted to say but simply could not get it out. Hope yours improves. I did find it an up and down thing.0 -
Hi everyone! A little late, but wanted to pop in and say hello.Sorry to hear you’re having a rough day, @ToughAsTeal, but that’s to be expected and I know you’ll get through it!
@Strongwoman, great to hear how well you did on the walk!0 -
@Bobby good. The most effective so let's hope 2nd time is the charm and if it doesn't knock it out totally a major slow down before next recurrence is in order. Have they discussed any of the maintenance drugs to follow. If I recall (no my memory didn't pull that up, I do keep a few notes for reference) you're stage 2 and I think the PARPs are only approved for advanced (stage 3 or 4) but if it hasnt' been mentioned do ask if there is anything applicable to your type and stage. And do ask to be kept in mind for applicable trials. Some oncologists don't automatically bring up those topics unless you ask....that's part of advocating for yourself to make sure nothing slips through the cracks.1
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Hey @Tinazzie I'd hoped we'd hear from you today. How are you gal?0
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@Fearless_Moderator, glad that you are continuing to do well with the treatments and sure that the CA 125 numbers will settle down again. How many more rounds of chemo do you have to complete?
As for me, some of you may recall that my recurrence is from my primary breast cancer and not the ovarian cancer, so I’ve been waiting for my referral to Medical Oncology to come thru. It did only last week and things unfortunately are crawling at a snail’s pace!0 -
I have an update on the HRD tumor test front as well that I thought might be of benefit to others so will introduce it here . There is a lot of confusion about obtaining it and frankly if it is useful. I have been reading a lot on the situation in other jurisdictions, US, UK and the more I learned the more I felt it would be an important piece of information. I wasn't sure if it would make any difference to my decision making but have decided to go with it for some specific reasons. So Juravinski Cancer Clinic contacted Myriad, in the US, sent the tumor sample and I'm waiting the results. I paid with cc $2000 US.
There is more thinking behind why we decided to do this, how and how it will impact decisions going forward but it may be better to include this in another section of the forum. I'm BRCA negative, stage 4 HGSC and will be starting Niraparib next week. CA 125 has increased to 160 from 58 in July so Im anxious to get started and hoping like hell I am HRD.1 -
@Tinazzie That is the worst! The snail pace........so hard to play the waiting game. I feel for you!
@Fearless_Moderator How are you doing and did you go to Pittsburgh yet?0 -
I watched last night’s speaker session as well. It was good, but I think I was expecting something different given the speaker was a Radiology Oncologist. However, there were all good tips and ideas on advocating for oneself0
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@Tinazzie on this Caelyx/Avastin combo there is no end date. As long as my cancer is shrinking or more so stabilizing they will keep me on it. I'm now platinum resistant after all these years so that's pretty well all the standard treatment left for me. If it stops working that's when they do into high gear on trial and whatever else might be worth another shot. Not horribly fussed. My oncologist has asked me to be her Patient-Partner on a new study she's initiating so she must expect she can keep me around a new years longer LOL.
So sorry they're moving that slow on your Medical Oncology appointment. My oncologist is a Medical Oncologist and I now she's swamped of late plus many of them are away at a conference in Europe I thiink. That latter might be part of the slow up for you to get an appointment. Be patient if you can (I know that easier to say than do) but I swear the best thing short of being cured for me was having my treatment transfered to a Medical Oncologist.2 -
Good morning everyone0
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Hello everyone,
Just waiting anxiously for results from a CT scan on Tuesday. Every time the phone rings my heart seems to skip a few beats! I've noticed after a long walk my back has been sore, so not quite sure what to make of it. Other than that feeling good, just a little more tired than usual.
It's a beautiful day here in Vancouver, so no excuse not to get out and enjoy!
Thinking of all of you strong ladies!1 -
Yes Fearless - memory is correct. I did raise drug possibility last appt and got a non response. Non committal - something about that is a separate conversation and tbd clinical trials once chemo done etc. crypto speak that takes you off in a different direction because then you wonder if there is something they are not telling you. Have to sign off as still working and have a 2 pm call - best preoccupation for me. chat next week
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@mjmck21 I too hope you're HRD. I am. I had to be tested to qualify for the clinical trial In was on for two years so the testing was free. They just ordered up a slice of my original tumor stored at PMH and analyzed it. But that testing was unique back then. I have noticed though there has been much more clinical discussion about HRD. Thought clinically are that probably half of us are and probably should be banked. I truly expect it to become as routine as testing for BRCA has become in the next year or so. Just my thinking though.0
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Good day @eileen. Too bad you're at the end of the call. We'll be shutting down shortly. Anything to share this week?0
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I got a call on Monday about the trial and she send me all info after careful consideration and speaking with my family and going onto this drugs actual website i decided that this trial isnt right for me and so i will be starting gem and avastan0
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@hope2022 we will all pray for a good CT result for you gal. I know the anxiety you feel, as do the rest of the gang here today. Back ache can be anything. But always mention something abnormal. Keep some notes on it....when you feel it, what are walking on, what have you eaten, what shoes you were wearing. You might find a pattern. For me it was new sneakers. They made me change my gait and balance so for the first week, until I broke them in (or maybe they broke me in) my back was killing me.0
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@Fearless_Moderator yes this is the way it is moving in other jurisdictions. The issue here of course is cost and uneven accessibility. It looks like knowing whether a patient is HRD or not will impact some of the research and treatments coming down the pipe so this could be an important tool in general. For me I decided that even if I am not HRD I will start Niraparib but my have an impact on my decisions if the side effects are too onerous. All in all a good decision and of course acknowledging my privilege to do so both in terms of I can afford to do so and I have an eager team who was willing to do the work to make it happen.
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Ladies, it's now after 2pm and as this is an hour chat it's time to say goodbye for another week. If you have more to share or ask you can open a discussion thread if it can't be saved to next week.
Thanks to all who've joined today. Lots of good discussion even with those who could only join for a bit.UNTIL NEXT WEEK, SO LONG FOR NOW.
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Hi @hope2022. No thats fine.
Just so everyone knows ...this is my thoughts and opinions on this trial and I am not discouraging anyone not to do the trial.
For me the study trial with durvalumab (imfinzi) with either the BA 3011 or BA 3021 i believe is just entering phase 2. I went onto imfinzi website. This drug is being tested and used for small cell lung cancer. So they are just now testing this on ovarian cancer.
I did post a discussion thread for immunotherapy. To ask if anyone has been on this drug trial.
The info sheets i received from the trial nurse in regards to both these combination drugs did not list what the drug does or even the BA3011 name of drugs or what those do or other.
So after research and going on the imfinzi website and doing some reading and such i just felt their is not enough evidence to support that this is a better option than what i am currently doing.
Yes I realize its just in early stages and this is what they are trying to access. But it was the listing of side effects they had on the actual website and they also have a video as well, that literally scared me! I ended up having a anxiety attach over this.
Plus the fact, the consent sheets that the trial nurse gave me to go over, the benefits listed on those sheets mentioned. A). only a limited amount of people and animals showed shrinkage and stable for my type of cancer and will not necessarily help me live longer and that it might not work for the 1 combination and on the other combination
.the benefits it mentioned said only a small number of people and animals showed shrinkage and stable and that again might not work for me etc.
On imfinzi website they list these severe side effects ..and a video. It even mentioned that the side effects can possibly result in fatal outcomes. It does mention that it can be mild if caught early and to report any and all side effects right away so that u can get the treatment.(Their are a few happy stories from people on their website but not for ov cancer.)
I do realize not everyone will get the side effects and yes they will treat you with pregnisone and or other meds with it. But as well until they the trial team will withold the drug until improvement. Which i am sure is all standard practice in any trials. but for me taking the chance to do the trial with the words small sum or limited amount of people???
They didnt mention percentage. Plus my immune system basically fights just about any medications these days when getting an infection with my immune system being low. I am allergic to quite a few. Like codiene. Hyrdomirphine. Sufla. Morphine. And a few more.
My family as well mentioned to me their thoughts after going over all pro and cons that if it showed better results and that it was perhaps a later phase etc. I mean in the end it was my ultimate decision.
For me i just felt it wasnt worth the risks. I literally had a panic attack and was scared to death. I guess you could say the side effects scared me.
WITH THIS SAID...
i do realize this phase 2 trial, it is still in early stages and this is what trials are for to determine whether other drugs can help other cancers. I, by no means, don't wish to discourage anyone to not consider the trial for themselves.
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@Eileen
Thank you for all the information regarding this trial. I understand that we all have to do what feels right for us after looking at the options available.
I am waiting for my ct scan results and will meet with my oncologist on October 6th to discuss options. She did tell me 2 weeks ago that she felt one of the trials was a good option. She said there were 3 open trials currently, but at this point I don't which one it would be. I have recently become platinum resistant as well. I have not looked at any of the other drugs are being used. I know that I have a lot of homework to do.
Wishing you all the success with your treatment.
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