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).
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Thursday, October 19 and it's time to WELCOME all of you to another online chat.
How has your week been? Mine's been rather crazy. Three days, from Sunday midmorning to Tuesday midafternoon without power or internet thanks to those heavy winds we had out here long Lake Ontario. Gosh, you forget how much you rely on having electricity. Thankfully we have a big wood stove in the farmhouse that heats the entire place and can be used to heat a kettle of water for tea or a pot soup. Now to play catch up on all the things I had to set aside. On a positive note though, I learned just how to balance a flashlight on my chest to optimize light for reading a really good book I pulled out of our library.
Wednesday I'm headed in to KGH for a biopsy of my tumor tissue. Yes, I volunteered for, yet again, another study. This one has no immediate benefit but they'll be sending my tissue to PMH to be assessed against 1500 differing bio-markers. It might benefit me for more customized treatment down the road should the upcoming chemo not do the trick. And chemo starts on the 2nd. Not looking forward to it but at least I've been through it once before so I know what to expect. Given it was pretty easy for me the first time, I'm seeing this time as more a nuisance than anything.
Well, it's just about 1pm, so let's get started. Looking forward to hearing from all of you today......
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@Readersmaven I see you got online early today. Glad you are able to join in if only for a while. Good luck with your scan tomorrow. When do you get your results?0
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@Fearless - Vol Mod...great attitude about upcoming chemo, I'm a firm believer in the power of positive thinking! Hope all goes well.1
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Hi Everyone!
Fearless your chemo is scheduled for the same day I will be discussing my CT results with my onc. I am expecting chemo is in my near future too, I will be surprised if my CT is clear, hoping for the best but preparing for the worst.1 -
Hi ladies, good to be here today.I have my 3rd chemo session tomorrow. @Readersmaven and @Fearless - Vol Modgood luck on your scan and biospy.1
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Hi @Fearless - Vol Mod.Glad to hear you are OK with the weather in ON(don't watch the news, too upsetting for me so don't know what's going on there).Thanks for sharing an update and Good Luck!I know for me the decision to participate in the trial was hard to make (I was eventually deemed not eligible due to some testing) but I do miss my clinical trial nurse .0
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@BeamBlossom hope your CT comes back with positive results!.0
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I don't see @KarenBemi on line right now but thanks to her for posting some information earlier today on Hearth House in Durham Region here in Ontario. Wonderful to know they welcome anyone to their online programs. They're a resource I wasn't aware of.
And welcome @albertan, @BeamBlossom, @Rad, @Readersmaven, @Tinazzie1 -
@Fearless - Vol Mod, scan results next Friday, week is a long time to wait, but what can we do. Like @BeamBlossom says...hoping for the best and Learning a lot about patience during this journey.0
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My update-3.5 months after surgery- I feel better physically and mentally.The anxiety is down a bit...with counselling and meditation/exercise and time...going into 4th chemo next weeek0
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Hi everyone! Sounds like some things are in the works for people re: scans and biopsies. I wish everyone well. I am currently trying to get a bit stronger and work on some personal development while I wait for my next CT scan in mid-December.1
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Question about BRCA genetic testing process/results-how did you get your results (the blood one)?Did your doc tell you or genetic counsellor?Do you think they refer patients to genetic councellor regardless of it it is positive or neg.?0
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@albertan I agree. The most disappointing part of coming off the Olaparib trial is missing the monthly connection to my trail coordinator. Ha ha...fixed that though. I had her added to our stakeholder group on a project I'm working on with some academics and clinicians at Queens U...so she can't get away from me so fast! And the new study has it's own coordinator who I'm already bonding with.1
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@Fearless - Vol Mod - will you be having 6 rounds of chemo? I'm wondering if there is ever any different treatment than more chemo for a recurrence, such as say, an estrogen blocker or a PARPi to control progressions and postpone chemo.0
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@albertan I met with genetic counseling to review results, it was a phone meeting due to covid, but she was very thorough and about 3 weeks later I had more questions and she responded to those as well. I also discussed the results with oncologist as they informed next steps.1
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@albertan - my BRCA testing was done early on when my tumor was first biopsied. My onc told me that BRCA status. I was recommended for further genetic testing and counseling due to patterns of cancer incidence in my family tree.1
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On the subject of genetic testing, I was informed that I would need to pay out of pocket if I wanted to have testing done. OHIP does not cover the cost. I wonder if this is because I have clear cell type, which typically does not have any genetic mutations?1
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@cbot check with your dr, OHIP covered my testing Stage 3 HG and my daughter has started process for testing and she will be covered ad well.
My mother had OC so that may also be a factor but worth asking.1 -
@cbot - You do have to pay unless you get recommended by a doctor.1
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Thanks @Readersmavenand @BeamBlossom. I did check with my oncologist and she confirmed that I would have to pay - I will clarify, but it seams she cannot justify recommending it based on my cell type (only 5 - 10% chance of any targetable mutations).1
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Long winded but this should address both @BeamBlossom and @albertan. First of all two ways of finding out if you're BRCA. (and Albertan, this is the Ontario process). Your oncologist/surgeon asks if you would like be genetically profiled and if you say yes, you're referred to a genetic counsellor. Blood work is taken and analyzed and she/he will go over the report with you. Or, in some cases and usually related to qualifying for a trial, a piece of your original tumor is take and analyzed for a specific bio marker. For example, I originally had my blood taken to see if I had the BRCA gene I came back negative but with two markers of unidentified origin. Later on, for the Olaparib trial I was on, they took a piece of my original tumor looking for specifically an HRD mutation and found it. If you want to determine if you are BRCA ask your oncologist or oncology navigator to help to get that done. Testing for other bio markers though is extremely expensive and I don't believe that outside of a study or trial they do that..
@BeamBlossom I'll be minimum 6 cycles of carboplatin and gemcitabine, which is what I had the first time. If the gem is impacting my red cells we'll stop it and just continue with the carboplatin. At end of 3 cycle I'll have a CT to determine if the drugs are working. If not change drugs. Otherwise continue for another 3 cycles. At end of that another CT to see if response is complete and if not more cycles up to a max of 9. Hoping 6 does it though. As far as recurrence intervention other than chemo, I don't know of anything other than the trial I was on that would replace chemo with a targeted therapy yet. Right now the standard course is chemo but perhaps followed with a PARP for maintenance. But talk to your oncologist about options available to you if you have recurred. That said, what is making you think your scan may indicate a recurrence? CA rising? Symptoms?
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That's it for me, hope everyone has a good week. Will look forward to catching up next week!0
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Thanks for your responses ladies!
Question for @Fearless - Vol Mod-how long were you on Olaparib?Was it your maintanance drug after first chemo cy.cle?What were the side effects for you?I was told I would be on it for maintanance after chemo is done.
Nuropathy-I started to feel it a bit in my fingers...I was in Walmart the other day and saw a foot cream for neuropathy for diabetics .Has anyone heard if this can be used in other cases of neuropathy?I wouldn't of course use without asking doctor about it.
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@albertan, I had genetic testing done, due to my dual diagnosis (ovarian and breast cancers). Surprisingly, I had no BRCA mutation, but one variant of unknown significance. The genetic counsellor called me with the results and like @Readersmaven, was open to me following up with questions a few weeks later. In my situation where it doesn't appear that BRCA played a role, it is concerning (to me at least) as to what to caused these 2 primary cancers.1
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Just want to ensure we don't mix up two processes. Genetic testing for BRCA and a number of other mutations that can provide a hereditary disposition to certain diseases is done through blood work and follow up through a genetic counsellor given the impact beyond the individual. But, there can be a genetic marker within the strata of the tumor itself yet doesn't exist in the individual's genetic make up. For me, other than the two weird markers that showed up but don't really have any current meaning I had nothing that could mean the disposition to OVC was passed along to me or that I could pass to my children. But within my tumor there was an HRD mutation. Confusing eh?0
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Thanks @Fearless - Vol Mod. Your explanation re: genetic testing was helpful. It sounds like testing for BRCA is more standard (but in my case, not applicable, as I have clear cell which is almost always BRCA -ve). Any other biomarker testing would be out of pocket unless I get into a study - unfortunately I just missed out on one that recently ended that could have provided genetic testing..... Not sure if it is worth going ahead and paying for it.0
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I see @KarenBemi and @kattie666 have joined us. Welcome ladies.0
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This has been a long week. I have been diagnosed with another UTI or bladder infection..... This freaked me out because I had these symptoms just before being diagnosed . I don't have my post chemo scan until November 27th. I don't know why it was scheduled so long after. (Oct.9th ) Just have to try to stay out of my head.... I was starting to feel better with the fatigue and then this hit...0
