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!
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
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It sounds like you have a busy week coming up, @Fearless - Vol Mod . Hope all goes well and that cycle 4 remains on course for next week. I do have to sign out, but will keep in touch.
@ToughAsTeal, hope you feel better and that the steroid creams work well. Take care.
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I think pharmacy is one reason why I am hesitant to debate a switch to getting chemo at local hosp. I could walk 15 if needed. I still just feel more confident going to Hamilton.0
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@Tinazzie have a great week😀🌻0
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Thanks @Tinazzie
It was great to hear from you again and wishing you continued success in your recovery. Have a great week and stay well.
@ToughAsTeal
I too am going to sign out for this week. I feel the buzzing of my headache raising it's ugly head again and feel the need to lie down. Sure am hopeful next week will see some resolution to how I"ve been feeling the last month or so. We'll see, eh. Good luck to you. I hope the change in dose and the new meds will help your side effects. Have a good week and see you next Thursday again I'm sure.0 -
@Fearless - Vol Mod re the headaches. And was it last week talk of how avastin does a number on sinuses? I sleep (or fall asleep) in a propped position because of sinuses lately. By morning pillows are thrown about on the floor lol. But nose has been very dry as well as stuffed up. Humidity level doesnt seem to make difference.0
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@hope some relief for headaches for you. Hope rest of the week goes well.
keep moving forward.0 -
Hi not sure if the discussion is still going on. Im Eileen and its great to be able to speak with others for support0
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@Eileen
So sorry you missed the chat on Thursday. We usually wind up right at 2pm EST although on occasion the discussion goes on a bit longer. Very happy to welcome you to the Thursday calls. Hopefully you can connect in when we're still 'chatting' which is generally anytime between 1pm and 2pm EST. In the meantime if there is anything you need please don't hesitate to reach out. Otherwise looking forward to welcoming you on Thursday next.
Cheers for now,
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THURSDAY FEBRUARY 3 AND WELCOME TO OUR WEEKLY LIVE ONLINE CHAT.
The recorded version of last week's Speaker Session on Oncology Pharmacy support is now posted the Ovarian Cancer Canada website. I haven't had a chance to listen yet, but intend to check it out when time permits.
OCC has also posted a link to a petition asking for equal access to home based remedies that many of us are not made aware of or able to be dispensed on that basis. You can find more information and the link to sign in support in the more recent OCC Facebook postings and their other social media avenues.
February schedule for the monthly Teal Teas (zoom platform) is also up along with links to register on the OCC website.
Hopefully this past week found all, if not most of you, doing well; whether it be with treatments or tests or just adjusting to your new norm. Love to here your stories. I'm sure you all have something to share. So let's get going......
WELCOME to all.....repeat "customers" (LOL) and those new to OVdialogue or this particular session. Say hello...tell us what's on your mind......
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@Fearless - Vol Mod
Good afternoon! It is a bit of a gloomy day out there, staying inside so I decided to get my tax stuff together!! The mundane things in life still have to get done! Besides with travelling back and forth to treatments, I will get a nice tax return from my deductions
. Always a positive! 1 -
Every year i promise myself to be better at keeping tax receipts in one good place! Every year at tax time i realize i have lots of good spaces and cant remember which "one" i used!Overcast here today but snow makes it brighter.
question.. side effect? How do i know if i am getting acid reflux? This past week, soon after i eat, i will have what seems like a hiccup, but its not a hiccup really.0 -
@ToughAsTeal
I suffered from terrible acid reflux before I was diagnosed. In my experience it is more of an upwards pressure and sometimes a bit of stinging from what comes "up". I never had hiccups. But yes mostly after I ate. I would sometimes take Gaviscon tablets before I ate and that helped.0 -
Upward pressure is good description. Hiccup was all i could relate it too. Was i eating too fast? Chemo related? I will note it with dr, and try gaviscon. "because it works"
happy to say hand and foot has been less so far. My chemo was reduced to 75%, plus i have used the steroid cream. feeling of nausea increased a bit this treatment. And very little energy.How is everyone doing?0 -
Hi @Taita and @ToughAsTeal Welcome to today' s chat.
Taita, ah yes tax season is upon us already and like you I'm amazed at the credits due to this disease that I accumulate over the year. Even my drive back and forth for any appointments at my cancer centre are tax deductible as the trip is just over the minimum allowable each way. Somehow though if I could trade paying more in taxes and being 100% healthy or what my circumstance is I think I'll take the former LOL.
ToughAsTeal, no idea if you have acid reflux. A hiccup without any other symptoms is likely just a hiccup. I have reflux and it can manifest as severe heartburn, or a feeing in the esophagus that a hot knife is sliding down it, to reflux of food especially when you bend over. I've had it for years and take a prescription drug called Pantaprazole twice daily that keeps it in check generally. I just treat the very occasional breakthrough symptom with a Pepcid AC chewable. That said, if you're concerned and it's persistent and not getting better or even getting worse then do let your doctor know. Always helps to journal each day and see if a symptom can be tied to something you're doing or something you've consumed.0 -
Definitely no burning sensation. Yes i should and will start journalling it, when it happens, eating, not eating, time of day etc. dogs loving the snow i bet?!0
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Oh, and gloomy day here too. We just had a mini flurry and now just left with some dirty snow that's accumulated the past week, gray sky and that damp cold that just seems to eat right to the bone. Gee, aren't I a great advertisement for people to travel here LOL.
Did my bloodwork on Monday. All good. Even my CA went back down the 200 pts it was up the previous tests. Got my first CT results on Tuesday....and doing a happy dance. My oncologist reminded me Caelyx/Avastin is slower to show impact but after three cycles she was really hoping to see everything stablizing. Instead she bounced in to tell me everything was shrinking. Not impossible but an unexpected impact. So we were both doing the happy dance. But with the good always seems to come something not so good...or in this case annoying. My chemo this week has been delayed while they try another echocardiogram on my heart. Apparently the flow rate of blood going out of my heart in in normal range but the rate itself dropped about 10% so they want to be sure it's not the Caelyx causing a problem and only difficulty reading my echos since twice now they haven't been able to inject contrast. So back I go at 8am on Monday to have another done and a promise to have an IV specialist on call to get an IV in me this time. If that's ok then I' m back on track for Wednesday. Of course I refuse to entertain wihat that means if there is really a problem with the flow rate. We'll just cross that bridge if we come to it.
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Had by visit with the doctor Monday and my bigger blood work. Good news is my numbers remain good to continue treatments. Only real side effects are inflammation the moves around, plantar fascitis and being tired by the end of the day so pretty good. My CA125 is creeping up and I know the Avastin can do that and I try not to stress of course. It went up 8 to 70. The doctors aren't worried so I not going to be. On another front, had a mamogram Tuesday and my breast cancer tumour has shrunk a little. Going in the right direction for sure. CT Scan on the 22nd. 0
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@ToughAsTeal
yes, the pups are loving the snow. They are truly outdoor dogs and bounding in and out of the snow drifts helps channel that energy they have. Or course being Brittany's they are birders so it's really quite funny watching them as they begin to see birds on the property or the geese flying overhead.1 -
@Fearless - Vol Mod
That really is good news! Unfortunately Caelyx didn't work for me. I had five treatments but didn't have Avastin with it, so maybe that is the trick. So glad your CA125 went back down and your tumours are shrinking after three treatments! This is such a crazy roller coaster ride but as long as we are on it, we are doing well!0 -
@taita, you're truly a walking miracle. So glad things are heading in the right direction so consistently. As for the CA, you're right not not to fuss. Anything can set it off.....it does respond any type of abdominal inflammation, much of which is generally of no concern. I use the same rule of thumb as you.....if my oncologist doesn't seem fussed, I just follow their lead. Good luck with the CT on the 22nd. I know when my oncologist showed me my CT report that said the largest mass I have was down to 3.5cm in thickness versus 5.5 before I felt so uplifted. Side effects recently have been rougher than usual so always nice to hear it's all for a good cause. That said, you can't change the Avastin dose so she's going to drop the Caelyx 15% in hopes that alleviates the worst of the effects. She did start me at 100% which she doesn't do normally but we thought we go with full gusto since I have a very high tolerance for discomfort.1
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We (OVdialogue) got a nice shout-out on the OCC social media sites today promoting our community. I find it interesting that members come to us in so many ways. Some hear about us through OCC of course. But many come via friends, support groups, google. So few come through referral from the cancer centres though and that really should be the first line of awareness we, and OCC, exist.1
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Do you suppose our oncologists have a similar chat room haha in a parallel universe to ours?@fearless hope reduction makes same difference for you as it has for me😀 @taita gaviscon, and its gone! Is that the commercial slogan?! I will give it a try.If not watching curling, new netflix show called murderville looks hillarious!Hope for a good week all!
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@Fearless - Vol Mod
I am with you! Go for the gusto and adjust as we go!!! So good that we have doctors who think like we do. Hope your symptoms slow down and you are good to go for your next treatment. Have a great week-end and stay warm!0 -
Take care ladies. Thanks for joining in today and hoping our trajectories all continue to move forward.
Stay strong, stay positive and never give up hope.....until next week, big hugs
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IT'S ONLY THURSDAY FEBRUARY 10 SO I'M FOUR DAYS EARLY WISHING YOU ALL HAPPY VALENTINE'S DAY.
No matter your current situation I do hope it's day to think of and thank those loved ones who have so generously and lovingly been with you in your journey day by day. BUT YES, IT'S 1PM AND TIME TO GATHER ON LINE FOR OUR WEEKLY ONLINE CHAT.
Has anyone else noticed a real uptake in questions and discussions around the PARP's (mostly Zejula) and Neuropathy? I think those two topics might be very useful Speaker Series topics for this year's schedule. What are your thoughts? Perhaps they've already been covered sufficiently and I just need to redirect our members to particular videos or other information on the OCC site for which my very inefficient brain these days has forgotten.
Reminders...other than Valentine's Day which doesn't need one...other than to remind my husband I expect the house to be overwhelmed with red tulips on Monday.....just a reminder of the upcoming Teal Teas next week. Go to the Events tab on the OCC website for more information and to register to participate. And a new Speak Series session The 411 on sexual changes after cancer, on Wednesday, February 23 at 4 p.m. PT / 7 p.m. ET.This free event will be hosted on Zoom and led by Dr. Anne Katz, Certified Sexuality Counselor and Clinical Nurse Specialist at CancerCare Manitoba.
During this session, Dr. Katz will discuss a wide range of topics for women living with ovarian cancer including sexuality after diagnosis, effective communication with yourself, your partner, and your health care provider, common barriers to sexual activity and how to overcome them, and dealing with symptoms of menopause. Go to the OCC website for more information and to register to participate.
Have questions for Dr. Katz? A question-and-answer period will follow the presentation. You can submit your questions in advance to speakerseries@ovariancanada.org.
So on those notes....let's get started. Wonderful to have you join us today (new or old..not literally of course...members)...please say hello and tell us what's on your mind or feel free to just sit back and follow today's discussions.
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Happy Thursday😀 had avastin tx on tuesday. I think the reduction caelyx has been good re side effects lessened hand and foot. Stupid tired today. Have been managing very short, husband escorted walks around block. Enjoying olympics. How are you?1
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Hey Fearless!
Interesting you should mention neuropathy, I was just thinking of you this morning and was wondering how it is that you have neuropathy if you didn't have taxol? I though it was the taxol that causes it.0 -
Hi @ToughAsTeal. So glad to hear the drop in dose of the Caelyx is helping those awful side effects you've been experiencing. The walks might help too if only to keep your heart pumping. Another good old Caelyx effect some can develop.
My chemo last week was delayed. Had to have another echo for my heart. This time they were able to inject the contrast so they finally have a good quality base line and fortunately the flow rate was still in normal range. I think the drop from October they noted was lack of exercise of any kind on my part during the time the fatigue was just killing me. Did have my chemo yesterday too though. For me, the Caelyx and Avastin and she did drop my Caelyx dose by 15% in hopes that would address the fatigue. Must have helped, didn't sleep a wink last night and lots of energy so far today...but that's the Dex talking. We'll see what the next few days bring. Still no hand or foot rashes or blistering though so thankful for that and hope it stays that way.0 -
Hi Tough as Teal, that's great that you are getting out even for short walks, you are ahead of me, I was taken off the Caelyx Avastin because it wasn't working for me. I start Carboplatin with Gemzar next week. I expect it will be brutal.0
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Hey @BeamBlossom welcome back. I've never received any reliable answers to questions about neuropathy but the cause can't be limited to a side effect of paclitaxel only since, you're right, I've only had one drop of it before they realized they had to switch me to the Gem because of intolerence. That said, my mother, who was healthy as a horse otherwise, had neuropathy in her lower legs and feet just like me so perhaps mine isn't drug induced but hereditary...or the drugs just exacerbate a pre-existing heredity condition. Something does set it off though since I notice a definite increase in intensity when I'm in chemo and improvement when I've been off for any extended period.
I've already sent a note to OCC about including the topic in their Speaker sessions. Would love to hear from a neurologist on the subject.
How are you feeling today? When is the chemo to start?0
