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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@ToughAsTeal
My last comment and yours crossed. Welcome back and hope your wait for treatment isn't long. We have the same wifi problem in Kingston..on one minute, off the next. I use my iPhone mostly and just close down wifi and work off my data. Since I don't do that much it costs are usually contained with my regular monthly plan.
Keeping my fingers crossed that transfer comes soon...heck, maybe they have better wifi along with the signficant cut in commute time.0 -
Yes i got the order in for udderly smooth it just came in. They were out of it in the store. I got the one that has 10 percent urea. But i picked up some uremol 20 percent. Ok nurse called spoke to her. She is getting in touch with my oncologist to see what to do. She figuring that we might have to lower the dosage of caeylx0
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Hi everyone, I"m here today. Sending you encouragement @Eileen as I do not have experience with this yet. @ToughAsTeal hoping too that they will have treatment in Guelph for you soon but if you are still in Hamilton next week I will be there on Thursday morning
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@Eileen re Hand and Foot.... specifically feet. I remained off my feet except journeys to bathroom and bedtime. Thankfully it was it was over Christmas so I had lots of help. Best thing I ended up borrowing a walker. I was able to hobble to bathroom on my own screaming Fa la la la la All the way there. I was able to sit on seat and someone would wheel me back to recliner. My feet were always elevated, when when in bed. Routinely, I would "write out the alphabet" with my feet, just to keep circulation going. When i could, I would gently roll my feet over a frozen water bottle, or even just hold it in place. I did have treatment in midst of this... wore my husbands black shorty sport socks with my black Naots (like birkenstock).. my photo didnt end up on internet "would you wear this?!" That I know of haha. And when it was at its worse one day, suddenly the next was a turn for improvement and relief.0
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Yes ty @ToughAsTeal my mouth right now is just burning. My cheeks that is so painful. I have been eating porriage and spups and last night made a bit of scrambled eggs with mashed potato in a spaghettio. The last 2 nights it takes me like an hr and half just to swallow my supper down have to use a bit of water to help. Severe indigestion doesnt help either.0
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I notice a few of our newer members online today and just want to mention not to get concerned about the conversations around Caelyx and Avastin side effects. Like any toxic drugs there are a myriad of side effects that could occur. Strangely, several in the current community on that therapy have a tendency to respond with some difficulty to chemo so they are experiencing some of the worst of what could happen. Others, like myself, are fortunate to experience much less or almost no discomfort. These drugs are generally used for those who are or have become resistant to traditional platinum based therapies like Carbo and Cisplatin. Caelyx is an old treatment but has been modified to become easier to tolerate for most. So use care in googling it. It will pop up some horrible stories but they tend to relate to the old versions of Caelyx, commonly known as the red devil years ago. it is chemotherapy. Avastin is a newer treatment only recently approved in Canada for use in the past five years. It is an targeted immunotherapy that is used more as a maintenance tool. And like all treatment plans, the drugs work very effectively for some, less effectively for others. Again, I've been fortunate that my cancer is shrinking once again and starting from a CA125 of 7500 6 cycles ago that's no mean feat! For others who do suffer significant discomfort , that is not unusual and the cancer care community is well aware of the difficulties so they are very attuned to helping the best they can to make it as tolerable as possible. If that's ever the case for you, I do recommend using trying everything suggested until you find a mix that works for you.2
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I did research caeylx and avastan on here and did find some remedies that was posted.1
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@Eileen yes yes that too, reducing caelyx and no issues.@mjmck21 i believe today is my last at juravinski. I need to take next week off, to give my body a break. The week after will be my intake at Grand River Regional Cancer Centre. I already sense a "hand off" when I have had to cal JCC with some questions. I feel at least in control of what has been not in my control, by making decision to switch.I have been assigned to a local palliative care dr now. He came for a home visit. Wasnt personality plus thats for sure. Did tell me he makes many visits to folks on our street. Cool. So i am just another stop. Ya that makes me feel awesome! (That was my inside voice. Really, what i wanted to do was lop off his man bun).1
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@eileen, I was having some discomfort from the Caelyx in the first two cycles. For me that was more indigestion, belly bloating, some constipation. They lowered my dose by a measly 15% and it all but disappeared after that. Yet my CA still declines dramatically and the last scan showed more shrinkage. The tendency is to start you off on the highest dose and then adjust from there for most of the drugs we take so don't be concerned if they do recommend lowering it. They won't do anything so drastic as to negate the effects.0
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Hi - made it back from my meeting to say hi and thanks Fearless for advising we can join anytime if only for a few minutes0
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@ToughAsTeal, wow you have your own personal 'man bun' to attend to you. LOL I too just hate those things. I list them along with the knee level crotched pants, and shirts unbuttoned low enough that the mass of chains around the neck just about blind you. Hopefully his level of skill is not on par with his personality.
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@ToughAsTeal happy this is happening, sorry I missed connecting with you last and glad to know you here. This forum really is a life saver and I want to thank all of you for being here! I'm still working through a lot and struggling with the post op reality of life with chronic cancer so will be connecting more and more as I go on.0
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@Bobby welcome and so glad you could make it. Yes, our gals drop in and out as their time and interest permits. So wonderful you could drop by today. Hope to see you back again.0
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Ty @Fearless - Vol Mod
Yes the nurse mentioned the dosage is probably to high. Just keep using magic mouthwash and my fluconazole until i hear back from my oncologist. My immune system being low sure doesnt help. But on the other side my son also caught covid last week so he is staying at home isolating.
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@fearless LOL!!!! Jason Mamoa is the only one who is allowed to have man-bun that I can think of!Am signing out....and am going to tune into some happy rockabilly while I wait
Here is to celebrating all of is this Sunday. Have a best possible week tealers!0 -
Lol @ToughAsTeal my happy song is wagonwheel. Have a great week everyone sorry i wasnt a happy camper today. But i guess everyone does have their off days and today was defentily mine1
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@mjmck21 so glad you're finding this forum valuable. We're always here to help with answers, suggestion and support as you wrestle with this disease and the journey ahead. In time I'm sure you'll find that like most of us, you're far more resilient and strong than you'd ever thought.
@eileen I do hope your son recovers from Covid easily and like most these days. Seems harder to avoid but easier to get through it most of the time, at least for those who''ve been vaxed, so that's a good thing.1 -
Ty @Fearless - Vol Mod. Yes. I always worry about catching it a second time. Being that my immune system is low. So i dont go nowheres. All online shopping. Except dr and cancer clinic.0
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Ladies it's just past 2:00 so time to say goodbye for another week. So I'll leave you with this thought......have a great week and remember we're here 24/7 when not live online if you need any help or support or just wish to share your thoughts.
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Good afternoon...it is a beautiful sunny day here.0
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Anyone here today?
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Hi, I have been trying to figure out how this works. I'm not sure what we share or what happens here.0
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Hello @MadBel. This is a live chat from 1 - 2. We can talk about anything!! It looks like the sunny day has kept most ladies outside and not here. Is there anything you want to talk about?2
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I was diagnosed with ovarian cancer in Dec 2019 and had my surgery and chemo in 2020. I just had my 2 year appt and continue to be NED..no evidence of cancer. I am so happy to have made it to 2 years.1
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I was diagnosed in April 2020 and finished chemo end of September 2020. I'm on olaprib now. It makes me tired but I'm not anemic. I'm currently sitting outside because it's 10 degrees although the sun is behind clouds now. I'm looking forward to sunny days. 🌞0
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@madbel please come back next week and hopefully more ladies will be here. Our talks are quite interesting. Last week it looks like 6 ladies were in the discussion. Every week it varies.2
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@CountryLiving you said it's sunny where you are, what's the temperature?0
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I live west of Toronto. It is 25! Where are you located.0
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@CountryLiving in northern Alberta our snow finally melted. 😁 25 would be lovely!0
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Ahhh I love Calgary and Banff. Thinking about heading there this summer for another visit.
Well it is almost 2.. I must go as I have an appt at the bank re my moms finances. Lets connect next Thursday..same time. Hope your week will be good!1
