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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Happy Thursday back at you, @ToughAsTeal. Sorry to hear you haven't been able to secure that spot closer to home. I'm sure they'll get that organized in due course. Why the home care? She won't be administering chemo will she? But definitely hoping this new treatment protocol works as desired. Is it every week, as well. I know you were in last week for the first dose of the new chemo.0
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Yes every week. Dr put in the request for home care. Its the old LIHN.... CCAC.... it so i have someone local.. could be over the phone (can I take Claritan)... to .... can you come look at rash on my heels and knees! It will be a good thing to have in place, and something my husband is happy to have. My assigned nurse hasnt contacted me yet. I dont feel i need to be on priority when so many others need it more + nursing shortages
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@Fearless - Vol Mod
Your message could not have come at a better time for me! I went in for my usual blood work Monday (only CBC on that week) and a telephone appointment popped up for an 11:45 call with the Dr. Only ever the nurse on that week. I knew something was up. My CT showed a Lymph node that had gone from 14mm to 18mm (apparently anything over 15 is considered significant for the trial). They didn't have the rest of the results yet but all the tumours they were watching were stable. 20 minutes later the rest of the scans came up. Marginal progression.
. Trials are really strict and I am probably done with this but I will find out Monday and still holding out a wee bit of hope. They decided because the increases were so small 1.4x1.5 changed to 1.5x1.6 that they would have the trial radiologist take a look at everything for evaluation. (Overall I had a 35% reduction in the tumours they were watching). Also, something showed up that wasn't there before (they think maybe they just didn't notice it?) and my ascites has increased. No new spots (except this thing they think was there before and they missed (boggles the mind). Interesting, this CT was done on the new machine which is more powerful and does more things than the "old" ones. Maybe it is just more sensitive? I don't think that argument from me will fly. Anyways, they will have the results and a plan for me on Monday. Rough few days this week, but I remember you saying, the trial gave you over a year of quality of life you wouldn't have otherwise had and this has given me (so far) 7.5 months of excellent quality of life. Onwards and upwards as they say. But it really does SUCK!!! LOL ! I feel better now 
and the week-end will be great!!!! 0 -
That's great to have that kind of assistance. We don't get much out here. Firstly they refuse to come to the home unless you're legitimately unable to travel so have to go to the Napanee unit. Then they're only there for individual specific tasks like injecting something or clearing your port. If you have things like rashes etc. they just tell you to go to your GP or oncologist or emerg. Not at all very helpful yet, the Kingston branch do a full service offering like you're getting. Too bad I"m outside that territory. Always so frustrating with the inconsistencies across the province.0
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Hi all,
Hope you are not experiencing too many chemo side effects @ToughAsTeal. I started post surgery chemo (carbotaxel every three weeks) as of last week and I struggled with the side effects. I'm in a new phase and realize there are a number of basic details that I need to better understand so may be peppering this forum with those over the next few weeks.
The first is I struggle with low blood pressure about two days after chemo and pass out, usually when I need to have a bowel movement. I spoke to my team and they think its connected. They set up home hydration which worked last time but not this time. It was quite upsetting for both myself and my partner. I have not seen this mentioned on line or in this forum. Has anyone experienced. Passing out after chemo?
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Warm greetings from Peterborough (ON). I am new to this chat although I am not new to this disease. I am currently going through a 3rd found of chemo and it will be my 4th year since the diagnosis (Spring 2018, stage 2A high grade). I decided to join so I may share my experience with going through this disease and what has worked or not for me - 2 surgeries, chemo treatments; IP port, PARP.
Also, I would like to hear from other women who have been going through multiple rounds of chemo and how treatment plans have been modified (using different drugs, number of chemo cycles - 7-8 versus standard 6).
It is bright and sunny in Peterborough I hope it is the same for the rest of the country.1 -
Dang @taita. And yes, actually it was almost two years for the trial I was on. And each time it's looked like there was nothing more for me, they've pulled a rabbit out of the hat. Hopefully these recent events aren't going to impact your trip to Italy. But I guess the first order of business is...what's the new plan. If everything else was shrinking perhaps they can great this node thing separately and continue to positively affect the rest while they deal with it?1
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To clarify, I had four rounds of chemo prior to surgery (mar 22) and started the first of 3-4 rounds last week. Also something I have not mentioned. At diagnosis my CA-125 was over 22,000! Went down to 665 prior to surgery and 202 post surgery.0
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@mjmck21 I did only once. After the first round of Cisplatin a year ago when they switched me to it after I lost tolerance for Carboplatin. My side effects were major fatigue and bloating but on the Friday I was feeling betters so got up to take a shower and just as I was drying off I could feel a wave of something.....bowel sensation coupled with nausea and the room spinning. Thankfully got myself out of the shower and in to a sitting position and didn't actually pass out but came very close. Hydration was definitely part of the cause. After that I ensured I was hydrated well, and they gave me extra Dex for a couple of days and never experieinced that again.
@Keepcalmandbreath warm greetings back and it's so great you're here to share your own stories. We are all so different in how we respond to treatment but there are lots of commonalities for which some have been lucky to find solutions or work arounds that can benefit others in our community.0 -
Thanks @Fearless - Vol Mod . Thats the feeling exactly except I have gone down three times now. My partner needs to come to the washroom with me at night for the first few days for safety.0
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@Keepcalmandbreath
Welcome and great to meet you. I am in Cobourg so we are neighbours. I have been on this journey since January 2020. Technically Stage 4, but I was treated as Stage 3C and determined to be Platinum resistant. I am in a clinical trial (my third line). The good news is I feel great! Would love to connect at some point if you are open to that. I am very interested to hear about your journey and the options you explored.0 -
@Keepcalmandbreath welcome and so good to hear your experiences too
@mjmck21 shut the front door 22,000? How terrific to hear the lower numbers 🙂 never experienced the passing out i hope that gets resolved for you
@Taita i hope you will hear you can stay on trial
I can smell marijuana here in wait room..since we drove through downtown Hamilton lol. My bloodwork levels are on low side but have gotten the ok for treatment. Going to sign off for now but will read more later on.
Hugs and high fives to everyone
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@mjmck21 your treatment plan is pretty standard. Chemo, surgery and chemo. For some of us it was straight to surgery and then 6 rounds of chemo. All depends on type, stage, and your overall age and health of course. There is a standard of practice but each of us is treated based on any unique needs we might have. As for the high CA 125, I've yet to see any real relationship between score and amount or size of cancers. What's really important is the trending up or down...obviously down preferably. Coming from what you were at to 202 post surgery will position you well for a good response to the last rounds of chemo. Let's hope it knocks it all out of you.1
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Thanks Taita!. I wondered too. And if they were using a different measurement as I have not seen those numbers in any of my reading. But hopefully things keep moving in this direction. The plan now is hopefully to follow up with maintenance after chemo but we are still waiting for the genetics and pathology reports to know which if any PARP might be the best option for me. Team is quite optimistic at this point but I know it can and will change over the next few months and years so keeping a balanced view. And eagerly read about all of your experiences with targeted therapies.0
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@ToughAsTeal good luck with treatment today. Stay calm and kick as$% if you need to eh? They might put you on Lapelga if it's your WBC's that are low. Gem does that. Just a shot on day 3 or 4 after treatment. Worked like a dream for me to keep my immunity levels way up. Wish it had been around when I went through chemo the first time.0
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Thank you all for your warm welcome.
@mjmck21 - never experienced passing out but when it comes to hydration and what works for me best is drinking lots of water for a few days after the chemo - specifically, Evian mineral water (I am not here to promote this specific brand but I swear by it). It does promote bowel movements and gives me energy (the latter maybe in my head...)
@Taita - yes, I am certainly open to connect. Perhaps, you can call my experience somewhat conventional - standard drugs, standard treatments (I am platinum sensitive). But please feel free to message me directly (I believe there is an option via this platform).1 -
@mjmck21 you'll find lots of reading here on PARPs, both Olaparib if you test as BRCA positive and Zejula if you're not. Hopefully they will deem one or the other as suitable as maintenance for you. They really are miracle drugs when they work.0
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Thanks everyone you are all so helpful!0
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Ladies,
We're at the 2pm mark once again. It does come faster and faster it seems. @toughasteal and @taita, wonderful to have you both back again. Onward and upward for both of you. You're both very strong and resilient gals.
And @mjmck21 and @Keepcalmandbreath welcome to this forum. I do hope we'll hear more from each of you.
Signing off for this week now, but wishing everyone a wonderful week ahead and see you next week. Hugs to all,
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Good morning everyone. Bit of side effects started for me this past week. The bit of the hand foot syndrome no blistering just red dots and on toe and below. For both feet. Lots of creams. Bit if rash got that under control. Now last few days really tender sore red upper mouth. Got the magic mouthwash. Using salt and baking soda for that.0
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@Eileen I had H&S severe in Dec. reducing the percentage of Caelyx and minimal issues after that. Dr also prescribed Betaderm steroid cream which helped.0
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I can't get on call today 5/5 but read these posts and others on site on regular basis. I was diagnosed Stage 2A, "clean" surgery in June 2020 no debulking, finished traditional chemo in Nov 2020 and was living like life like I moved on . Maybe not. My CA has jumped to 42 as of yesterday's check up and dr ordering a CT asap. if it has come back, hoping is small and affectively treatable. I remain extremely heartened by all of you living well in your own journeys long after you first got your news. I am signed up for all the calls offered by OCC in May and also get on Wellspring calls now and again. I have the publications offered by OCC. I will continue to do whatever I can to get this under control...too much to live for.0
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Our first chat for May. Yes, Thursday May 5 and welcome to our community and those joining us today.
I just read @Bobby post of this morning. I'm finding we are getting more and more Sisters who aren't able to participate but taking advantage of the fact the conversations are always there to follow. That's wonderful to see and just a reminder that everyone is welcome to participate, any time. Even if you're able to participate you can join in or leave anytime within the 1 hour timeframe (1pm - 2pm ET) and you're always welcome to peruse the conversations any time at your own leisure.
As noted last week, I have consolidated the reminders about monthly events on the home page into one post (TEAL BY THE MONTH) which I will update each month on an ongoing basis as events are brought to my attention. It's not solely to share OCC events. If there is anything you're aware of, even in your own community, that you'd like to share with others let me know in a private message and I'm happy to add it in. If you look today, you'll find I recently added in a series of wonderful Lunch & Learns offered by the Cancer Cares Manitoba in partnership with OCC. They are open to anyone in our community and some great topics being addressed. Details and links are in the list I added under TEAL BY THE MONTH for the May entries.
Mother's Day is fast approaching and for those of you who are Mothers or those intending to celebrate their own Mother's any great plans to share? Out where I am a glorious sunny, mild day is forecasted just like last year when we had our first wee picnic on the lawn overlooking the lake. I couldn't have asked for anything better. This year I have Tyler home, the first Mother's Day we've been together in 10 years. So excited to spend it with him, and perhaps share another picnic on Sunday.
Lots of new members recently, and hopefully some joining us today or somewhere down the line. And some very new to this disease or awaiting diagnosis with much fear and trepidation. Do your best to offer them the support they need to help them manage their fears as you see their posts pop up with questions or they post their introduction. As I'm sure you'll all remember how scary this period is coming into the possibility of a disease you knew very little, if anything, about.
And on that note.....it's going on 1pm and time to get started. If you're new and reading this just make sure you're signed in and all you need to do is type in a comment to begin participating. Just a quick hello if you're not sure what you want to say or share initially is fine. And if you prefer just to follow the conversation and not participate that's fine too. And for those repeat "offenders" LOL, welcome back.So let's get started ladies......who wants to jump in first?........
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Hi @Fearless - Vol Mod. Not at all well today. Got a call into my oncologist. Had my avastan last monday. Wasn't sure i was going to get it. Been having severe mouth thrush. I was using magic mouthwash but it seemed it just kept getting worse. The nurse looked at it and spoke with my oncologist and she felt i was ok to go ahead with avastan. She came up afterwards and looked and said yes u have a bit of thrush looks like the nyastatin in the mouthwash isnt strong enough. She gave me fluconazole. Its only been 3 nights of taking it but it seems like it still getting worse. Having issues now swallowing because the roof of my mouth is red and white and same with my cheeks. Red white patchy. Also shaky and feel weak too. My feet on the other hand was seeming better but now last few days really hurting to walk the big toes and insides of my heel are hurting. Lots of cream dailt but i can see red big blotches that hurt.0
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Welcome @Eileen. Happy to have you back but so sorry for the news on your side effects. From what I gather, the severity of your reactions to the Avastin is not unusual. In fact, I think I'm more the exception than the rule. So many of my friends on the Caelyx/Avastin regimen reported very similar effects to you that I was totally prepared when I started but so far (knock on wood) 7 cycles in the worst I've had is some increase in the neuropathy in my feet, but that comes and goes, and a mild sore throat that is ongoing and accompanied by a hoarse voice. That said, I continue to slather on creams on my hands and feet, 'just in case'. By the way, the best cream I've found is something called Udderly Smooth. Cheap and very effective, at least for me, in keeping away the blistering skin.
Your oncologist is aware so I'm sure they'll do the best they can to mitigate the effects. Hopefully it won't mean stopping the treatment totally but may be a brief hiatus or lowering dose. Hopefully they'll get you some relief soon.0 -
Has anyone here had this expérience and if so what did u find helped? I been trying salt water rinses too
My oncologist seem to think maybe the salt was irritating it. Dont know. But all research ive done said that was the best0 -
Well @Fearless - Vol Mod my oncologist asked how i was doing and been good so far tiny bit of rash but got it cleared up a bit of red rash on the foot and heel but been pretty good. I decided a few days ago to try a luke warm salt bath for my feet. Seems like after that is when the big toes and sides of heels really started to hurt. My oncologist was saying to me that my ca levels had dropped dramatically and i was responding well to treatment. This is only my second session. Dont get blood work till next fri to see how this 2nd session went. Oh let me say i am scared right now. My mouth looks so bad.0
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Happy Thursday😀
I second that for Udderly Smooth.I am sitting waiting for bloodwork results to see if good to go for treatment. Things are moving forward for me to transfer care closer to home.Internet wifi is problem here today if I am in and out of dialogues0 -
@eileen, last year I posted a long list of side effects and treatment suggestions from a gal who'd gone through signficant issues with Caelyx and Avastin but not sure under what it's archived. I'll try to find it for you and repost. But I do recall a recommendation to stay away from salt and flavoured toothpaste. Baking soda mixed into lukewarm water as a gargle was helpful to her, as it still is for my sore throat. And she was able to get a toothpaste from her dentist that has no flavouring so didn't add to the irritation. Hands and feet...she and all of us...swear by Udderly Smooth. Walmart carry it.
Oh and if @ToughAsTeal is on today or catches up with this later on she should have some good suggestions for you.0
