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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@BeamBlossom, I may also be facing the choice of Caelyx/Avastin or Taxol/Avastin, or possibly Topotecan (spelling). The Taxol concerns me re: neuropathy. I'm also really skeptical about the effectiveness of any of this for my clear cell histology. Also looking into clinical trials but they are limited for clear cell.0
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@KarenBemi I think most of us would agree that surveillance practices seem very inconsistent, not just province to province but doctor to doctor. When I went through first-line treatment I had my CA125's once per cycle. No scans, even at the end. Then put on a four month follow up cycle which consisted only of a CA and a sit down...no scans, no internals. First scan I had was a year and half later when I raised some symptoms of concern and then after waiting for 2 months of CA125's to see it also rising. So was my surveillance particularly effective...NOPE. Learned from that not to assume what i was getting was sufficient and to advocate for what I felt was appropriate..and demand an answer if the response was NO. After recurrence I had very very close scrutiny but because I was on a trial drug for two years and the trial demanded that level of surveillance and reporting. But out of that I inherited the medical oncologist who was supervising my trial and it's just her nature to surveillance intensely which suits me just fine. In a nutshell, if you feel you should be getting more than you are, ask for it. Often if they realize your expectations are more than the basic or minimum they'll give it to you.1
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I'm also waiting to hear about trials, there are two coming up in January that I will be suitable for, I'm just waiting for my medical team to call with the details about them so I can consider all of my options. i know some people who have chosen Caelyx as 2nd line treatment, if it failed, then put them on Taxol, so I'm sort of thinking it might make sense to just start with that one in the first place.0
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@Fearless - Vol Mod I've had some back pain, even pre cancer, but it really got bad after the hysterectomy. So, I don't think it is was a result of the chemo, although the chemo seems to have weakened the layers protecting the nerves and that's why the pain is so severe now and feels more like a radiating pain through the full back and not just one area. It may also be scoliosis which was the reason for me finally getting a referral for the scan. Will see my family doc early Jan and the Gyne Onc team shortly after...
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@cbot - I read recently that the mechanism for cell death is entirely different for Caelyx than for Taxol. If it isn't working, the will quickly switch you to another drug.0
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Well Ladies, I must get back to work but before I go, I want to say. Thanks to you all. While many of your ladies are currently in your fight or have started to fight again, it is inspirational to hear you. Even though you maybe having issues, I still feel there is hope in your statements. So...Stay Strong and Stay Positive. I hope to see nothing but good things next week.0
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To all you ladies going through treatment or dealing with new new diagnosis my thoughts and prayers are with each of you, stay positive and hope everyone has a great weekend!0
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Thanks for the info on Caelyx, @BeamBlossom. Next time around, I will advocate for more frequent checks of effectiveness. I don't want to go through another full series of chemo with all of the side effects, only to find that it is not working.0
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Thanks ladies, CBOT, Fearless & Rad, I wish you good strength to enjoy the holiday preparations just ahead.0
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So my friends, it's that time again. Thanks to everyone for joining us today and lots of invaluable sharing.
If anyone is wondering, we will continue our live chats through the holidays...or at least I'll be here for those who may need to connect. And given current circumstances for some of you, if anyone needs to make immediate connection you can always feel free to private message me or any of our sisters. Please don't hesitate if I can be of help, even if only to listen.
So many of us going through a rough time all of a sudden. My thoughts and prayers we will all have the strength and resilience to enjoy the holidays and turn our thoughts to the so many things we still have to be grateful for in our lives, despite this disease.
Until next week ladies......
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@Cbot - I was told there would be a scan check after 3 infusions.0
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@Fearless - Vol Mod - well said! I am thankful that Christmas is here to distract me.0
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Thanks to everyone, for your encouragement. Until next time!0
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Have a good week ladies.
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December 17th ladies and WELCOME TO TODAY'S LIVE CHAT.....
For anyone new today, ensure you sign in so you can participate. You don't need to sign in if you only want to follow the discussion threads and not comment.
Well, the holiday season, no matter which holiday you celebrate, is officially here. I know I'm not really ready; at least like I used to be. The tree is up. The lights are on. But the ornaments are still in boxes in the basement. No shopping done.....and I am starting to be concerned about going out to pick up a smallish fresh turkey...if there are any left. With Covid numbers rising in the Kingston region where I usually shop, I'll either stick to heading north to Napanee or west into Prince Edward County I guess.
But I'm not really fussed being this disorganized. It's just Wayne and me this year. Tyler is busy in Edmonton with the World Junior Hockey championship. And I've just finished the first of six cycles of chemo and I'm tired. So we'll stay in our personal bubble...maybe take Christmas eve to put on a little mood music and finish the tree. Then Christmas day do a major Zoom with the lad to top off the day since I've already had my gifts....my CA is down 560 points already and I'm not back in chemo until the 30th....two of so many things, that despite this disease and Covid, I have to be grateful for.
So how is everyone else today? Let's get started...........
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@Fearless - Vol Mod happy holidays! I'm excited to read about the downward trend of thor CA, good news indeed.
We are also planning a very quiet holiday. Our daughter lives just 10 minutes from us, however, a parent of a child in my grand son's class has just tested positive for covid so, we won't be seeing them. Zoom Xmas dinner for us!0 -
Hi @Readersmaven Nice to have you with us today. How are you?0
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Hello Readersmaven and Fearless
So happy to here of your dropping CA Fearless, as tired as you are your efforts are paying off! That is such a good feeling I'm sure.0 -
@Readersmaven yes, I was delighted to see my blood work results the other day and the indication the chemo has already started working. I don't place a lot of reliance on CA scores but it is the only benchmark available other than the scan and I won't be getting one of those for another month or so...so I"ll take any good news I can get!
Sorry you can't get together with your daughter and grandson but better safe than sorry eh. We used Zoom at Thanksgiving with our son and it was quite fun and a novel approach to connecting. Can't believe we timed our cooking so accurately that we actually were able to eat together. We'll also be Zooming on Christmas day.0 -
Today my mother is getting her biopsies. I am to pick her up in 1 hour. She is still quite uncomfortable due to pleural effusion and ascites. Trying to trust the doctors0
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@Fearless - Vol Mod, I'm good! I did a couple of mediation classes (online) this week and it's helped me to get a sense of contentment. That is really my goal as I wait for another scan in January. I've decided that the "spot" on last month's scan can't be anything because physical I feel very good.0
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Hey @BeamBlossom, thanks and great to hear from you today too.
@prayersformom I see you're with us today. How are you and your mom feeling....hopefully more optimistic? Have we all been helpful?0 -
@prayersformom sorry to hear about the ascites, I had it (looked 9 months pregnant) and was ago uncomfortable until it was drained. Hopefully your mom will get relief soon.0
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@Readersmaven - nice to hear of your finding contentment, that's sometimes a hard substance to get ahold of, where on line do you access the mediation classes?
Fwiw, I had a "spot" on my liver as per each CT since day one, when it didn't change through chemo, it was assumed to not be cancer. The surgeon examined my liver at my debulking surgery and found nothing, yet on subsequesnt CT the spot returns. Maybe its dust on their lense lol0 -
My mom is much more positive then I am which I feel terrible about. I am just really scared. This forum is very very helpful. I think I might feel better when there is a plan. She just seems so uncomfortable and that’s hard0
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@prayersformom - your Mom will certainly feel relief when treatment gets underway, I felt better 60 minutes into my first chemo infusion. I hope that you can find a sense of joy and hopefulness too, there is so much to be grateful for with the new treatments available for ovc, its not a wonderful ride by any means, but there is good news coming to us all the time and people are living longer and longer nowadays.0
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@prayersformom Let's all hope the results of the biopsy are more positive than you expect. Are they still not talking about draining her effusion though? If she's having difficulty breathing that should be attended to and it's not a complicated procedure. Some times you have to advocate a bit to get things moving in the direction you want or to speed things up a bit. So don't shy away from raising the issue with her medical support if it's not being addressed and she's in discomfort.
@Readersmaven great attitude. I totally agree. No point in worrying about something until there's something to worry about. Meditation is such a great way of putting your entire self into balance and perspective. I try to do 15 minutes every day and when I miss it, I really feel it.0 -
@BeamBlossom our local cancer support centre, Hopespring, has online yoga and meditation, as well my city (Kitchener) offers online classes (sign up on Facebook). I just keep searching for a range of online opportunities.
@prayersformom getting plan is important. Once you know next steps both you and your mom will feel more in control.0 -
Thanks @Readersmaven - I am determined to get to Hopespring in the New Year for sure. It has been a hectic Decmeber with coping with my Mother's death a few weeks ago and then learning of my recurrence five days after that, I could sure use some meditation training.0
