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 - that sounds very interesting, is it a phase 3 trial?0
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Happy new year to you too @Tinazzie and everyone else. And good for you @ToughAsTeal for getting a walker. I'm trying to think about what would help me be more connected to my family and grandkids as far as mobility aids. Last year we went on donut walks/rides every weekend. I like in a very hilly part of north vancouver but maybe a wheelchair would get me out there.0
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@ToughAsTeal - I have found the Caelyx slowing my mobility as well, don't have a walker but kind of wanted one at one point. First it was my hip in pain, then on the 2nd infusion, it was my knee. Who knows how yesterday's will go, maybe gentler when not combined with the Avastin.
I had a CT scan just before Christmas, after only 2 infusions. It unfortunately did not show promising results, pretty much everything unchanged except for 3 new bone mets. So, next is a biopsy of those to confirm that they are actually ovc, before assuming the treatment regime is not working.
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Welcome @ToughAsTeal and @gaylestorm
ToughAsTeal, how are the feet? Still immobile with the blistering or is it beginning to subside now? My next Caelyx/Avastin (good bloodwork permitting) is Wednesday. My schedule actually called for it yesterday but my oncologist gave me a pass to enjoy my son's visit.
Gaylestorm you have some really unique weather out there this year. Wow, snow for Christmas! Not being a winter-person I never thought I'd say it but lucky you. No snow here again this year. and I do miss those beautiful Christmas eve snowfalls and waking up to the white blanket. But weather unpredicable everywhere these days. My son will arrive in Calgary tomorrow to minus 27 and then Saturday it's supposed to be plus 1 and plus 5 by Sunday....apparently the benefits of the chinooks.0 -
Good Day Ladies!! Cant believe a new year is approaching. @Taita at my last oncology appt I was so excited to see that PM now has Starbucks and a small bistro for food. Makes the waiting a little better.1
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@gaylestorm I have been concerned about family and friends we have in BC with all the crazy weather. Glad to hear you are ok and have a warm electric blanket.
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@Taita - i added urisec inaddition to udderly smooth.nthank you for mentioning that cream😀
@BeamBlossom - i have had 3 caelyx and 5? Avastin. CT on Jan 6. Results the following week.@Fearless - Vol Mod - just drink lots of water before and after airport tomorrow to stay hydrated? 😢
Really dissappointed world juniors cancelled.0 -
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Sorry to hear about all the treatments going on in the midst of the holidays - but in a way it's good to hear that Covid isn't completely taking over the health care system.
My husband went for a blood collection appointment that was confirmed a month ago, but was turned away today, as it was not urgent enough due to the abundance of Covid tests that are in the labs at the moment. I get that. Resources are finite.
@ToughAsTeal, the description of your tan brought a smile to my face. Your sense of humour is a blessing and strength indeed!
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@Fearless - Vol Mod thank you for your new year wishes. Glad to hear your son was able to make it out for a wonderful Christmas.
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@ToughAsTeal - that's great to hear that you are half way done, best of luck with your CT scan next week, hope you have good results.
My cancer center recommends a product called "Bag Balm" for the hands and feet. It has only 3 ingredients, Petroleum, Lanolin and water. It is intended for chapped teets on cattle, so it is easiest to get at farmer supply stores, I got mine at Lee Valley Tools.
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@ToughAsTeal yes, we were shocked to hear they'd had to cancel the World Juniors. Kept teasing my son that if he'd opted to stay with Hockey Canada another year to manage operations again that wouldn't have happened. Sad for all those young players now missing out on participating.1
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For those ladies in treatment I found this little saying I hope helps...
Keep Going
Because you did
not come this far
just to come this
far.
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@BeamBlossom it is Phase 2 for platinum resistance. It is randomized. I got the new drug. Yay! The other side is taxol so I still have that one on the table. It has caused dry eye as well but drops keep it manageable. Avastin has raised the blood pressure but also manageable. There are women who started it 2.5 years ago and who are still on it. I am hopeful!1
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Re getting walker. My family had been helpping me hobble, sometimes they had to slide my feet forward to get to bathroom. Accidently hurting me was very upsetting for is all. On short notice, thankfully, family member had a walker i could borrow. Until a few days ago i could only manage one way, then i would sit on walker and they would wheel me back to recliner. Was screamingswearing in pain even with percocet. I changed it to a scream version of Deck the Halls. am sure neighbours could hear. Slow steady improvement last few days. Rash is spreading to areas and clearing up in others. Have been taking lots of photos to "measure" changes, and be able to show my dr. Hands still bad, with knitting in the corner teasing me. Gettingg up once and hour for a loop down hallway and back to livingroom.1
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@Taita - Wow! that is encouraging, always great when you get the trial drug. Do they monitor effectiveness via CT or is your CA125 giving you good feedback?1
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Let's all hope 2022 brings lots of new developments in treatments and trials.1
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@BeamBlossom - the cream you mentioned, reminded me of what my nurses had recommended when I was in chemo. It's a product that new mothers put around their nipples while still breastfeeding. It's called Lanoline HPA, can be found in drug stores in the pediatric section. It worked really well for me.0
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@ToughAsTeal I empathize with you. Your description sounds like me when going through treatment. It does get better after and improvement is slow but I am sure you will get your 'legs' back. For me it meant joining an cancer exercise group where I worked on my strength.0
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@BeamBlossom ..i am afraid if i send my husband to lee valley, he will come home with alot more than bag balm! Lol
@CountryLiving i need that keep going quote posted everywhere! Great words, thank you !1 -
@BeamBlossom yes they do. I am on a four week cycle. Local blood work and call with nurse on week 1-3 (so only at PM for one day) and in person visit week 4 with lots of blood work andCA125 (which means two days that week). Treatment is every week so it keeps me busy. CT scan every 2 cycles (8 weeks) last one showed 25% reduction. CA125 went from 180 to 56 after 4 weeks and held steady. Next week will be CA125 and CT Scan results. 🤞🤞🤞. Main thing is I feel good!2
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@ToughAsTeal - but I'd give him full credit for going into any store and requesting that product, lol!
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@Taita as Christopher Reeves said, 'Once you choose hope, anything is possible".
A friend made me a teal coloured bracelet with the cancer ribbon on it saying 'Hope'. My oncologist loves it and knows that's what helped me on my journey.
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@ToughAsTeal while the Caelyx/Avastin has yet (knock on wood) to cause the issues you have, the Gout I developed and associated pain was truly unbearable so I totally get how you feel. Since the Gout only seems to hit one food at a time, a cane has worked for me. They've now added a uric acid count to my regular blood work at my GPs request. What that shows will help determine if a drug called Allopurinol will help decrease the build up of uric crystals in my toe joints. In the meantime he's provide me a prescription for the Prednisone and Hydromorphone that I can keep handy and avoid the agony of a trip to emerg if it hits again. It's especially hard to feel an attack oncoming given the neuropathy in my big toes. That pain mirrors the gout pain.0
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@Fearless - Vol Mod YES big toes!!!!!!!!! I found walk backwards easier because i wasnt bending at ball of foot as much. Thought i was losing my mind!0
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@Taita - that's awesome that you are getting those encouraging results. Sounds like a new treatment will be available from this trial maybe in about 5 years time.
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Here's wishing you all happiness in the new year. Hope all goes well with treatments, scans and appointments coming up in the next little while!
Hugs!1 -
I wish each all of you peace, joy and miracles in 2022.0
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So long everyone, all the best is 2022!1
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I am reading everyones posts and updates and i look forward to the Thursdays and reading everyones updates and suggestions. For those in tx, visualize a cocktail of different sorts at your next infusion. Here's to a new year, new goals, successes and supports. 🌻🍸🌻🍸🌻🍸😀1
