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!
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Comments
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@Taita Thank you for talking about ascites. I too have wondered about it, since it's often referred to on this forum, but never in any detail. Much appreciated. Heading off to my 10th and final (for now) chemo of 2023.1
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Good Afternoon Ladies.
How has it been this week for you all? My boy and I did up a couple of trays of baked goods yesterday and started distributing them. My boys went to spend time with our 84 yr old friend while I was at Hospice and had a wonderful time. Then we went to my Uncle's house and had a great visit there too.
We dropped off a tray to my Aunt earlier in the morning. This is what I call the Holidays. The visiting and reminiscing and letting the boys interact and listen to the stories. So much fun!
Nice to be out and about again after being down and out last week. We think it was another ileus but that I caught it in time. This meaning I knew it was starting and stopped eating any more before it made me really ill. It took me longer to recover this time and that is ok.
I have been looking into some Phase II Trials for LGSC and will be looking to discuss this with my Oncologist next week. Any tips for the ladies who have brought up trial to their Oncologists....I am open to anything you may have in your toolbox in order to open up talk on this.
I am here for anyone who is ready to chat.1 -
Today is a whirlwind of a day. I am at my friend's house for a visit today and then off to do errands, home to put together some gift baskets awaiting my Mom's arrival from Belleville. Off to a dinner with my gf's and my Mom later tonight. My nephew will be coming to stay the night after he takes his family to the Farmer's Parade of Lights this evening. Then......we will ALL be up bright and early tomorrow morning getting ready to leave the house by 4:30am. We have been invited to participate in City TV's BT Spirit of the Season at Casa Loma in Toronto which starts at 6am ET. I am so excited I have no idea if I will sleep or not. Kind of like a kid waiting for something extra special. I am off to Hospice tomorrow afternoon to make an intentional candle for the season. That will be fun as well. I believe I should crash and sleep, sleep, sleep after that. Let's hope!!!2
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@Strongwoman
A couple of trials…exciting news!! Where are the trials being conducted?I can’t imagine that your oncologist would oppose your participation in a trial and you should not hesitate to discuss it with them. If you do get pushback, you can ask for a second opinion. Let them have a look and see if they see any red flags that may exclude you. Also would be a good idea to go in knowing which one is your preference…although I’m sure you would be agreeable to either. They will contact the trial leads and discuss your specific case, determine your eligibility and participation. If your oncologist isn’t a medical oncologist, they will probably consult with one at your centre as well (they are involved in trials and seem to have more knowledge on the research side of things). Are you at LHSC? LHSC has a clinical trial office that dealt with me throughout my trial…but the trial was conducted at the centre. In any case, if you need/want assistance with the process when you’ve been accepted, they may be able to help you navigate that stuff. It’s wort asking about when you get to that point. I am happy to answer any and all questions you may have (to the best of my ability).1 -
@Strongwoman
WOW! The next few days are absolutely crazy for you. Sounds very exciting though! Since I’m usually up early, I’m gonna try to catch the BT special tomorrow morning!! I love Castle Loma during the holidays!! Used to take our boys to different activities there. Can’t wait to hear more.0 -
@GloHo Thank you. I am not positive if I will go this route. I am researching to know what options I may have as currently there is not anything that I can do as I had a toxicity to Trametinib. Due to this I think it may make me exclusionary to the Ramp 201 TRIAL. This would leave the BOUQUET trial and both are out of PMH in Toronto. Gathering info now for conversations next week. I have a telephone meeting with someone tomorrow afternoon that works with trials to get a better understanding of what I am looking for. I will post anything relevant after I speak with them. As you have stated and some others as well, if we don't try the trials how will this process advance?1
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@Strongwoman
GOOD LUCK!! 🤞0 -
Thank you @GloHo
Take care all and I will check in from time to time over the next day or two should anyone post more comments.
Be kind to yourselves!!!
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@Strongwoman wow you definitely have things going on! I have City TV Toronto on time shift so I shall record BT tomorrow morning so I can watch later (not 3 a.m, my time!).
I had a couple of rough days this week. Nausea, vomiting and diarrhea. Today I feel good so I’m getting stuff done! I have an appointment with the oncologist tomorrow and next round of chemo on Monday. I will ask him about something in addition to metochlopromide for the nausea and vomiting.0 -
@JoanEG They give me Emend. I take it just before the infusion and then a lesser dose that evening and the next morning. Also a med. called Ondansetron 8 mg same frequency but also as necessary after that. Both for nausea. They have worked for me, but I don’t get nauseous very easily. I have mostly taken metochlopramide. What is BT?1
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@Hooodith BT is Breakfast Television
They have one out in BC as well as in the past they have brought co anchors onto the Toronto show. I believe they have done their best to go Nation-wide recently.0 -
Some words of encouragement for all. This is from the book entitled "How to Stop Worrying and Start Living" by Dale Carnegie
"Suppose we are so discouraged that we feel there is no hope of our ever being able to turn our lemons into lemonade--then here are two reasons why we ought to try, anyway --Two reasons why we have everything to gain and nothing to lose.
Reason one: We may succeed
Reason two: Even if we don't succeed, the mere attempt to turn our minus into a plus will cause us to look forward instead of backward; it will replace negative thoughts with positive thoughts; it will release creative energy and spur us to get so busy that we won't have either the time or the inclination to mourn over what is the past and forever gone."
How does that quote make one feel? It is a lot to ponder and reflect upon for sure. Words can be so powerful and reflective.
Hope you enjoyed my share this morning.4 -
Thank you @Strongwoman. Powerful words indeed.0
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Hi all. Just got some bad news. My niece, 61 years, has ovarian cancer. She is just 4 years younger than me - my sister is 15 years older than I am. My sister called to tell me. She has just been diagnosed so everyone is reeling. She was scheduled for a hysterectomy but they cancelled that when they discovered the cancer. She is scheduled for an MRI in Oshawa and then a full-body scan in Toronto (hoping before the end of the year). My sister’s not sure if my niece is ready to talk about it yet…and there are still a lot of unknowns. So, hoping I can support not only my niece but my sister. Devastating news that has shaken my sister pretty badly. She lost her oldest son many years ago to mesothelioma. Feeling sad. Thanks for listening.1
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@GloHo That is bad news amd am sorry to hear that you are all going through this. I am thankful that your sister felt she was able to call you and talk to you about it. A lot for your niece to take in as you well know. So much for one family for sure.
Kindly let us know how we can support you and when your niece is ready, perhaps she will join us here as well.
My thoughts are with you all.0 -
@Strongwoman @JoanEG
Thanks for your support. Just thinking that it may be a different cancer…gynaecological, no doubt. My sister may have jumped to ovarian because that is what I have. My nieces’s symptom was bleeding (post-menopause). Just hoping it’s been caught early. So, waiting to hear.
I hope I can bring some hope and positivity to my niece. I will definitely share all of the resources and supports I have found over the last 4.5 years (especially this group!) as well as help her through the medical stuff. She has a husband as well as adult children and adult grandchildren…so support should be good. It also sounds like her Dr is covering all the bases to get a clear indication of what’s going on.0 -
@GloHo
So sorry to hear this news, as we know it takes a bit of time to process. I was originally treated in Oshawa at LakeRidge with debulking surgery and my post surgery oncologist is from that hospital as well. If it provides any comfort, the two surgeons are beyond amazing and have excellent reputations. Same goes for my oncologist. She is always open to new ideas and pushing the envelope. I have always felt that they all (including the nursing team) cared a great deal and always went the extra mile. Sending big hugs. ❤️0 -
@GloHo. So sorry to hear about your niece. It makes me even more determined to nag my niece to keep up the mammograms and ultrasounds of her ovaries and tubes. Her mother died of breast cancer seven years ago, and I and her other aunt are both BC survivors, and I have OC. She is really high risk. 59 yrs old. I hate nagging her, but when I am gone, she will be the matriarch of the Canadian branch of our family. I am going to tell her that I expect her to stay alive and keep the family together.0
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@Taita
Hi Taita, I see that you are currently on Topotecan. I have been reading some of your threads and just have a few questions if you are comfortable with that. Do you know why your doctor chose Toptecan as your next line of treatment? Did they ever mention Vinorelbine as a chemo option? I live in BC and have been on Gemcitibine since March, but my recent scan showed progression. My doctor wants me to try Caelyx again and then Vinorelbine as opposed to Topotecan. She said they don't like to use Topotecan because it's 5 days for a week. I know we have a nursing shortage and I'm wondering if this has something to do with it, as Toptecan would require more nursing staff.
Also, I saw you may try carboplatin again. Can I ask why your doctor is looking at that as an option?
I hope your ascities are not too painful. Anyways, I hope this all makes sense. Just trying to look at all options available and what may have the best response rate. Oh boy, what a journey we are all on!!0 -
Today was my hump day. 3 rounds of chemo done 3 to go. I have a CT scan tomorrow and will be put on the surgery list. It was a very long day. Arrived at 9 am and didn’t get finished until 4:45. Wound up with a 2 hour delay. The nurse hung the first bag of good stuff at 11:00 bag but didn’t undo the clamp and the machine didn’t alert her that it wasn’t dripping until 2 hours later so the 3 hour drip didn’t start till 1. By the time 2nd bag was done and it was flushed I wasn’t done until 4:45. I felt bad for the nurse the weird thing is a second nurse always checks the first ones work and she didn’t notice either. The main thing is it was just a delay it did no harm.
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@hope2022
Hi. I’ve been thinking about you and wondering how you’re doing. Sorry to hear you had some progression on your last scan. Good luck with your upcoming scan results.I am also at late stage and am currently on weekly Paclitaxel. The next two standard of care drugs for me are also Gemcitibine then Topotecan. I have just requested that my oncologist add Beva to my weekly Paclitaxel treatment plan. I have a telephone appointment with her tomorrow to discuss this. In the meantime, my chemo oncologist sat down with me yesterday when she heard that I was requesting this combo treatment. She told me that my oncologist had called around to consult about what treatments I could receive at this time (my oncologist didn’t mention this when I began the treatment, so I have been second guessing her and researching other options). Anyway…it comes down to what each drug is approved for and if it is not approved for a specific use then it is NOT FUNDED for that use. There is an option to pay out of pocket but I haven’t discussed that with my oncologist yet. I’m sure the cost will be exorbitant and out of reach. Through research, I have discovered that there are combination therapies that would be good for selvage treatment…the problem is…the government hasn’t approved them for that purpose!! There is a drug formulary that lists approved drugs and what use they are funded for.Although this is an Ontario site, the formulary is for drugs approved in Canada.As you know, I really appreciated all of the drug options you listed awhile ago and have been researching and noting each one for potential use and will discuss with my oncologist.That has been my experience in Ontario. I will let @Taita share her experience. I am interested to hear more from her on this as well. It is always interesting to hear what other oncologists are recommending and willing to try for their patients at this stage in our journey.0
