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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APRIL 20 AND TIME FOR ANOTHER ONLINE LIVE CHAT; OUR WEEKLY FORUM TO CONNECT, SHARE AND ENCOURAGE EACH OTHER.
Wow, this time last week we, or at least we here in southern Ontario, were basking in sunshine and warm temperatures. How quickly that reverted back to windy, cold days. It reminds me of living with OC; one minute you feel on top of the world with some great news, the next is a reminderer nothing seems to stay static for long. How do you cope best with the uncertainties?
Bumped into an old friend in front of the hospital the other day. She was there for her 5 year/all clear check up. She saw me and burst into tears....as she said a combination of joy along with wishing her news could be the news for all of us. At least, from what I see the "all clear" cases are more and more and while recurrence is still the norm, more and move are iiving longer and better lives with the disease.Enough of m y thoughts.....what's on your mind today? Anything to share with all of us? Anyt8ing we can help with?
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Hi everyone, I'm feeling better on Avastin/Taxol to consider squeezing in a trip to Europe in May or June. Planning is so different than the way I used to plan as I was a solo budget traveller even into my 50's and there are so many new things to consider I reached out to ta da! Our very own intrepid @Taita for some advice and very grateful for all her wisdom but we both thought it would be a good topic to resurrect here. The OCC webinar is no longer on the site as it is out of date now. I have checked previous threads but it does become dated quickly. So friends, are any of you traveling? How are you managing Travel Medical Insurance esp which companies are working with you while still on treatment. Do you have any trusted advisors in the business that we could speak with? Do you have any other tips and tricks to manage fatigue or other issues that came up? I am planning either a UK trip or France for about 1.5 to 2 weeks. Anything else?1
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Yes @Fearless_Moderator the wind and chill is not very pleasant for sure! We took our granddaughter for a walk to the park around the corner and even she complained!My CT showed all stable. YAY! But that darn CA125 keeps rising. We were planning on continuing with current regime but they cancelled my treatment this past Monday because my ANC (Neutrophils) was .29!! Hopefully up tomorrow and back on track Monday!!I just got a call today that they had an early opening for my cataract surgery. YAY again. May 9 which is the OC Day n the Hill I was participating in. So sorry to miss it but I want my eyesight back ASAP! Second eye June 1!! As my GP said in her referral, if you have limited time, you should at least be able to see! So grateful!! All this caused by the Dex steroid weekly pre-treatment.I have enjoyed my extra week off! Oh and our daughter just booked us all to go to Portugal in October. 😁.Hope everyone is doing well and we are all waiting for the nice weather to come back!1
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@mjmck21 what a great and helpful idea to start a "travel tips" section. Can I ask you to open a dedicated Discussion thread, topic: Travel Tips, that everyone could add to. One reason I don't travel much, if at all, myself is how complicated it all seems to be.
On a related note, don't miss Paris. Even if you focus on the UK, it's quite easy to hop over to Paris for a day or two.2 -
Hi everyone.
@mjmck21 So glad to hear you're feeling well enough to consider a European vacation! I have heard of a travel insurance broker that a few cancer patients use...MediQuote. I haven't used it yet, but would be interested to hear how it went for you if you decide to call them.
@Taita Sorry to hear about your delays. Happy to hear your cataract surgery is coming up soon. It will be wonderful to have your eyesight back again and in time for your trip to Portugal! What relief you must be feeling.
Well, I started the prescreening process for a clinical trial (ARTISTRY-7) on Monday and my biopsy is scheduled for tomorrow. My CT is scheduled for early May. I will start the trial May 8 or 15. I have met all of the clinical trial care team and they have been fabulous. It is not a blind study so I will know which treatment group I am in and there is no placebo. So I will get either both trial drugs, one trial drug alone, or one of two from the four options for standard of care drugs. Win-win...I will be getting treatment specific to my cancer no matter what.3 -
Good morning everyone. Well my ct have shown shrinkage and stable and no new. They forgot to include my ca125 blood work so i have to go in for that today.
Our weather did the same thing was warm then got cold and chilly. But alas warmer weather started up again was able to do tiny bit of backyard work yesterday.
So my oncologist is going to present my case to the surgeons again. It a long shot but its worth a try to see if they will allow second debulking. She told me 90 percent of the time they say no. But here hoping. On other hand i can do 3 more cycles of gem and Avastin for a total of 9. Never did have complete sessions my platelets always dropped after day 8. Other than that talked to my bff and her and her husband plan on visiting in June. Cannot wait.1 -
@Taita it's always so inspiring to hear you''re coming up roses again. Yipppeeee on the latest CT and don't worry about the CA125. You know how unreliable that score can be. And wow to get in so early for the first of the cataract surgeries. Absolutely that takes precedence over the OC day on the hill. You won't be doing anyone a service if you keep walking into walls LOL.
Portugal in October? I was wondering how long it would take you to commit to another trip. Gorgeous country I hear. Of course I'd only go for the Port and some nice cheese.1 -
@Fearless_Moderator you read my mind! Exactly my plan! Maybe a little Madeira too!1
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@GloHo congrats on the trial. So hope it works out for you. My clinical trial experience was nothing but positive from the oversight and communications to the actual result it achieved for me. I wish the same for you gal.
@Eileen congrats also for the current good results. Hope you get the go ahead for the second debulking if you think it's a possibility. And wonderful news about visitors. Having them come to you is almost as good as getting away yourself.0 -
If I do any travelling it will be to see this young man....my first grandchild; Sebastian. And a week or two in Tampa, where he lives, won't be that hard to swallow right now.
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Oh my goodness congrats @Fearless_Moderator. Being a grandmom is. So wonderful. My grand daughter is 11 now. On the other hand my youngest just had a miscarriage their for her first pregnancy.0
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@Eileen I totally agree re trial availability and this one is even more limited than most. I recognize that I am very fortunate to have the opportunity to participate and to have it available in my local area (so, no travelling and couch surfing in Toronto!). Fingers crossed on your negotiations for another surgery.
@Fearless_Moderator How adorable! Congratulations and I hope you get out to see him soon. Florida...warm, not too far...hmmmm...sounds like a plan.
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@Fearless_Moderator being a grandparent is the absolute best!! Congratulations!!! I expect you will move Heaven and earth for that trip to Tampa ❤️. What a cutie.1
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Ladies, I'm going to have to leave you early today. Have to do a run up to the ER to get checked out for blood clots. Last Wednesday I had 2 hours of magnesium, 2 hours of a blood transfusion, 15 minutes of lasiks and then my chemo, gemcitabine. Now my left foot especially is blown up like a balloon so it needs an ultrasound. I'm pretty confident Im fine and the cause is all the friggin' meds they have me taking.....12 every morning and 17 at night.and somethng isn't jiving positively. We'll see what they have to say.
So everyone have a wonderful week. Let's look for more spring weather. Cheers for now,
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Omg well good luck @Fearless_Moderator. Wow. Yes thats a lot of pills for sure. Well hopefully u have a good outcome.1
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Have a great week everyone.1
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Hello Ladies
I know it is early but am letting you all know I won't be joining you today.
When I went to clean my elderly Aunt's house after we found out she had C. Diff, I fell on her ice covered porch. I did something to my wrist and it has been hurting since. So much I ignored but now cannot as the even the slight change of angle to it while attempting to grab or lift something and I fear dropping it due to the pain. So I am off to a physio appt to get it looked at. Knowing me, I broke it and will need something but who knows. Will keep you posted. I hope it isn't as it is my 'wipimg' hand.🤣🤣🤣
I will say as of late I have been struggling with another friend's active dying and everything around it. For her, for myself and just this disease in general. Lots of emotions have come up. The bond we made and now more and more silence from her end. What to say and what would I want people to say to me. The bigger picture of what others go through at this time and what that looks like. It is a lot to take in. I know there is a takeaway from this and do my best every day to find it or come closer to it. It is difficult. One thing she passed on to me and I hold on to is this "Enjoy every day and every moment and live how you want to live."
So true. This is that anticipatory grief at its finest.
Today I have got my winter tires off, bought more wool to knit, gone to thrift store and will be off to a dental cleaning before my physio today.
So how are all of you? What is anyone else "sitting in" today?
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For me inBC its going to be nice and warm today. I am going to work in my garden today. I have plants I seeded and they need to get out of the greenhouse. Next week I have appts and chemo next Thursday. Also have house guest staying with 2 kids for a few days.Then my grandkids after that for a weekend.
I am going to enjoy the warm weather after all the rain we've had.
Hope everyone is well.0 -
I will try and join today but I may be napping. Lol! We are looking after our 28 month old granddaughter this week. Quite a feat considering I had chemo on Monday but she is a doll and we are doing just fine. She is busy so I like to take advantage of her nap time.My Neutrophils were still too low for Chemo this past Monday but the Dr decided to go ahead anyways. She lowered the dose slightly and we are crossing our fingers my bloodwork is good tomorrow. I have to get 3 treatments in to get my Lapelga shot which keeps those WBC’s from going in the toilet. All in all feel pretty good! Enjoying the sun because we are getting some crappy weather this weekend. So done with rain and cold! If I don’t get to the chat today, everyone have a great weekend!0
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WELCOME TO ANOTHER THURSDAY ONLINE LIVE CHAT. IT'S APRIL 27 AND TIME TO SAY HELLO AND TELL US WHAT'S ON YOUR MIND TODAY.
Please excuse any typos you may find from me today. Remember the old joke about "my dog ate my homeward"? Well today my dog ate my reading glasses. Seems he decided to wander a bit in the night and explore what was on the coffee table in the living room. Of course they had to be the only pair I have so everything is a blur to me right now.
I'm wondering if you've all seen the changes to the OCC website. All cosmetic I'm told, the functionality hasn't changed. And it is a work in progress apparently. Do let me know your thoughts on the new format if you have any. Our site here will be following with an updated format fairly soon so stay tuned.
Everyone got your taxes done? I'm such a procrastinator. Finally got everything off to my accountant yesterday. I swear he just plugs the numbers into one of those tax prep programs and then charges me through the nose ! Right now I'm looking at the Disability Tax Credit form. I'm pretty sure it applies to me but figuring out which of my myriad of health care professionals to go to to complete the form is beyond me. Has anyone had any success with the application?Well ladies, its going o 1pm and time to say hello if you want to participate today.........
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@babs272 and @Taita you ladies have your hands full between guests, projects and treatment. Babs272 so nice you can start planting. Here, the rule of thumb is nothing before May 24. We're still subject to frost up until then. I stick to it but notice I'm becoming the one who looks like she's late planting these days. Everyone else seems to just barge ahead at the first sign of good weather. Whatever the case, it just invigorates me so much watching buds on the trees open and the flowers and verggies start to poke through the earth.
Glad to hear you're both feeling pretty good,m all things considered. I missed treatment this week. My oncologist wants to wait until I"ve finished the round of antibiotics for my foot so I've been delayed to next week. Always disappointed to skip a session bur like both of you ,I feel pretty good and just anxious for the weather to settle down into real spring.0 -
@Strongwoman Hoping your wrist isn't as bad as you fear. Sounds like it hasn't slowed you down at all! What an emotional roller coaster you are on right now. Thinking of you.
@babs272 Please send some of that BC "nice and warm" this way, please! Gardening is so therapeutic...enjoy! Sounds like you have your hands full with house guests. A blessing to have the kids around...enjoy it to the fullest!
@Taita Enjoy your nap. A two-year-old can certainly be a delightful handful! I hope your numbers start to climb again...fingers crossed for you.
@Fearless_Moderator I swear I can't even think without my glasses on any more! Honestly, even if I just need to focus or think on something, I put my glasses on!
I am experiencing a little soreness in my biopsy area. I'm not sure if it's bruised from the pressure they used for the ultrasound or something else from when he was moving the local anesthetic needle around (it had that funny bone feeling - didn't really hurt, didn't really tickle). It almost feels like a muscle issue because it only happens when I turn or bend in certain ways. It's not constant and I think it may be getting a bit better. I had the biopsy last Friday and this discomfort didn't start until Monday/Tuesday. Not sure if this is normal, but I see my GP on Friday and will ask her about it. Otherwise, I'm feeling fine and am just waiting for my CT scan next Friday.
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Good Morning. Yes weather is so nice here in bc the orchard cherry trees are alrrady starting to flower here and we have tulips and stuff already flowering. Had to have more blood work done today again for my chemo today is all is ok. Still having issues with my gadtric h pylori. But i git good news that my dr that left the one practice office has now joined another médical association and as of may 1 he be up and running. So thats good i can rebook with him to figure out what our next step is try to get this acid reflux under control. I'm on rabeprazole and also doing ranitidine 300mg and at night gaviscon just to try to keep it down. Been doing that since easter weekend after my allergic reaction to the h pylori meds. The walk in dr put in a referral for a scope but that could take months. I know ranitidine lowers platlet count so hopefully not too much that i can have chemo today.0
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Good morning everyone,
It's a beautiful day here in BC, so nice to see the sun after all the April showers we have had!
I don't join in too often, as I always seem to be a step behind in the morning.
I just finished my first cyle of gemcitibine and my ca 125 went up. Feeling pretty discouraged right now. Taxol and bev only worked about 4 months. I did read that the response rate to Gem is not very good. I will complete another cycle and see where we are at after that.
Not many options left at this point. My doctor is looking for clinical trials, but nothing available here in Vancouver right now. I have thought about travelling somewhere if the right trial came up, but understand it would be a lot of work and really have to think about how I want to spend my time.
Not feeling very positive right now.. this jouney is getting so hard.
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Welcome @GloHo and @Eileen. It seems everyone today is in fairly good shape. Perhaps ir's the weather. How can you not feel positive and optimistic when the sun shines, eh? I do appreciate you all checking in today even though it doesn't sound likke anyone has any pressing issues that need help. So on that mote I'm gong to bail a bit early today. I feel so sleepy I think I should follow Taita's lead and lie down for a nap before I have to take the dog in for his annual rabies shot at 3pm.
Please go ahead without me or just have a great week. Wishing everyone who has tests or results coming best of luck. We'll all be pulling for good news. So until next week.......
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Before I sign out today, @hope2022 I'm sorry you're feeling down today. Try to be patient with the Gem a bit longer. I've been on it three times in the 7 years I've been in treatment and found that unlike the platinum based chemo where you can see almost immediate results, Gem kicks in a bit later. For me it was usually after the third cycle that I'd see any effect it was having. So perhaps it's worth continuiing a bit longer on it, especially given there aren't many alternatives right now. If Gem on stabilizes you that would at least buy time in hopes of a new trial appearing.
I'm somewhat in the same boat as you. Just finished ccyle 2 of Gem and no movement in my CA125, so hopefully it's slowing progression down. We'll see after this cycle and a new CT. Otherwise I feel pretty good outside of this dang infection I have n my left foot. It seems, for me, these days everything I get is unrelated to the cancer and ir's become the least of my worries LOL1
