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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LOL 😆
Interesting when I was informed the radiologists decided as a whole it wasn't necessary. Probably differs from province to province???
I didn't mind drinking that stuff (as long as it was cold) compared to colonoscopy clean out stuff.
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@Strongwoman that reminds me of something one of my friends sent me One of my WW members sent me this“Just remember “you are not your hair and you are not you skin…you are the soul that lives within”.1
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@JoanEG, sorry to hear about the vomiting. Did you get all the anti- nausea meds they gave me? I had three different ones. The one I use mostly is Metroclopromide. What they told me is to pre- medicate with the anti- nausea pills, not wait until you are feeling ill. Hope you are feeling better.1
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@Strongwoman, @melissa. We don’t have to drink anything except afterwards, water, to flush out the kidneys. We get the contrast through an IV.1
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Hi everyone. I’m going to weigh in on the contrast debate. I am in Ontario also, but I do drink the contrast before every scan. I had been sent for a CT a couple of times without direction for the drink, only to get there and have the technician tell me that I needed the drink for the type of scan I was getting (abdomen/lungs/pelvic). So I had to sit there and drink two jumbo cups of the stuff and wait two hours before they would scan me. Now I just stop by the hospital and pick up the EZCat drink to prep prior to my appointment. It requires you to drink one cup the evening before and a cup two hours and one hour before the scan. Then I just go in and they hook up the IV to my port for the IV contrast. I actually don’t mind the drink - it has a lemony flavour. I’m not sure if the main centre requires the drink because I always ask them to book my appointment at my local hospital.Not sure if it’s a small town thing, but my reports are complete and accessible on my health portal within hours of my appointment. So, if I have a scan in the morning…I’m checking my report that same afternoon! I’m pretty sure that’s not true for the main cancer centre because my oncologist didn’t believe mine were ready that quickly and made me wait a few days for our telephone appointment to review the results.Interesting how different the rules are. I just looked it up and it says the double contrast shows your digestive track better.0
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@GloHo That is what I would think as well but the hospital I am at, no one gets it at all anymore. Only the contrast that goes in the IV. I would welcome drinking it, if it showed things better. I have found the last few months that my reports have been lacking of info. Like how does one go from having mild hydroureternephrosis on the left to mild to moderate and now moderate? Those are changes in my eyes.
So odd about this contrast debate. I would welcome the return of it. Wait and see what happens is all I can do. Thanks for weighing in. When I go next, I will mention different experiences from other peers and see what they say.
I can also see my results online once the report has been completed. I love that feature.
Thanks for weighing in @GloHo0 -
I am getting the weekly Paclitaxel treatment and am also preparing for hair loss again. I just got my hair cut short this time instead of shaved like the first two times. I’ll wait to see how it starts thinning before I decide on the shave. I usually wear a scarf because there are so many different colours and ways you can wrap them and they feel a bit dressier when you’re going out. I do have a couple of hats that I also like to wear. The bonus for me with hair loss is not having to shave my legs!! HAHA🤣
@JoanEG Love the quote!!1 -
I was amazed at all the hair I lost on treatment. Legs, arms, underarms, etc Then surprised at the downy hair returning noticeably on face and arms. Something I hardly noticed before.1
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@Strongwoman
I really don’t understand the rationalization behind it…probably cost!!Like you, we are heading away this weekend. Going to Michigan. Will see our local hockey team (GO KNIGHTS!) and will sightsee Frankenmuth (BEAUTIFUL German village), visit Bronner’s Christmas Wonderland (BIGGEST Xmas store I have ever seen!) and, of course, check out cross-border shopping at Burch Run. It’s been many years since we’ve been there and are really looking forward to it.Have a great time in Niagara-on-the-lake…it is also a wonderful place to visit at this time of year.1 -
@GloHo we have been to Frankenmuth and did all those things. It's beautiful and magical all at the same time.
Wishing you a wonderful weekend away.
Packing now and making sure I don't forget any meds!1 -
So this morning I woke up with a sore throat. Home kit says covid.... Sigh. Husbands making me go to ER fingers crossed I'm not neutropenic it's been 17 days since chemo2
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Oh @melissa sorry to hear that. I hope that all is good, they give you paxlovid and you go home to get over it. Thinking of you. Update us when you feel better and up to it.0
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Hi ladies,
I'm back home from the hospital. My labs were good except my neutrophils were mildly low at 1.2 but they weren't concerned. Normally by day 20 they are normal. They did an ultrasound of my lungs which were clear as well as x-ray. @Strongwoman they did in fact write me a prescription for paxlovid I'm going to go pick it up. I don't feel too bad, still with the sore throat and now fatigue. Hopefully the drugs work!1 -
@melissa I am thankful that you have that prescription. I will continue to have faith that everything will stay mild (symptoms) for you. Glad you are home to heal as well.
Take care1 -
Hi ladies
So quick covid update. I have been taking the paxlovid since Sunday morning and I have not developed any new symptoms. Suffice it to say the stuff works. As well, my sore throat is gone.
@Strongwoman I hope you enjoyed your trip to Niagara on the lake!
Some more good news today. Dr said my scans are clear NED!!! And am in remission!!!2 -
@melissa. What wonderful news! NED! In remission! WooHoo! And no worsening Covid symptoms too. This is to celebrate for. Got some wine? I am so happy for you. Hope you can soon be up and about and enjoying this midwinter season. Does Montreal do anything memorable and special that you look forward to? I have never been there but my son tells me it is a beautiful city. He almost moved there permanently.1
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@JoanEG thank you!!!
@Hooodith Montreal has tons and tons to do I wouldn't even know where to start. Great food, museums, shows, theatre etc. I think what I would like to do is drive around and look at all the homes lit with Christmas lights. A friend of mine suggested celebrating with champagne , might just do that soon! If you've never been to Montreal it is a well worth visiting one day1 -
OMG @melissa What a wonderfully positive day for you! Being informed you are NED is exhilarating. Are you on an emotional high with the news? I am happy for you and that the medication is working. Enjoy how it makes you feel and go with it. Thank you for sharing your news with all of us.
Yes, my trip was wonderful. Thank you for asking.2 -
@melissa Your thought process is similar to mine when I was deemed NED. I did my best to think of all the things I wanted to do and could do especially without worrying about how I was feeling. Live every day to the most and know a new one begins tomorrow. I believe we are all "hyper aware" of our bodies now and you will for sure know if there is something up. In the meantime, go enjoy it all. So happy for you! Wonderful news indeed!!!
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Hello Ladies. Apologies for not getting this started earlier.
I am going through something right now that we can't pinpoint. I feel like I normally do when I have an ileus but this time no nausea or vomiting. I have my IM ports in and mainly using the Hydromorph due to the abdominal pain. Yesterday my palliative doc told me to double my sleeping pill and go to bed. I did. I can have sips of water but no more than that. Feel extremely bloated. Have passed gas and had BM yesterday and this morning. Burping a lot. Fatigue/tired with hardly any energy. So I am resting and chilling.
How are the rest of you?
I had a wonderful time away and will share a couple of pics.
This is what the lounge area to the spa looked like.
What is today looking like for you?
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@Strongwoman rest and take care of yourself! It is the only way to let our body heal. ❤️I am sitting in the chair getting my fourth infusion of Topeocan this week. Tomorrow I will be done until my bloodwork and check up on the 29th. Extra week off because of Christmas. Two weeks ago I was so sick and literally stayed in bed for a week. Some Dex pre meds this time and lots of hydration seem to be doing the trick this time and feeling quite good!As an update my CA125 was at 1800 (after the Gemcitabine didn’t work) and had lots of ascities. Drains of 5.5l and 7.5l each week. Part of why I got so sick with the last round of treatment. Well it went down a touch to 1600 in November after my first round of Topeocan but last week after my second really rough round it went down to 487!!! And the ascities isn’t nearly as bad!! So I just had to share the good news!!I
I am so excited for those who are NED or possibly getting there but for me it has never been a option. We think this will probably be my last Christmas but if things keep going my way it will be a wonderful one!!On another note for those of you who don’t know, I am former Member of Parliament and was championing Ovarian Cancer before I knew I had it. Long story short, in addition to the $10M in federal research funding OCC received in the 2019 budget for research and clinical trials (first time ever) , this week they were just awarded $3M in additional research funds! There was lots of strong competition for the funds but OCC had a strong and stellar application and prevailed. More hope for the future we all need to hang on to. Have a wonderful weekend everyone!3 -
Good morning everyone. Well I am at home now from hospital. Yeah they managed to do that colonoscopy and get those clips in place for my radiation 1 time treatment. I cannot believe within 2 months that new tumor infiltrated my colon and is now almost totally closed off. So hoping that 1 treatment will help. I had a meeting with my oncologist. She then spoke to my main 2nd in command oncologist, who took over as my normal oncologist is away on a semantically for 3 months. She is very supportive of me moving forward and restarting my chemo today. But my stomach is now non stop bloated and pressure. Looks like I'm pregnant. I can feel 1 of my tumors in my left lower side that's been constantly hurting. It feels like the size of maybe a mandarin orange. I know it's not going to get better but I'm grateful that I hope chemo abraxane will help to some extend. I do know I know cannot do blood thinners because of my severe gi bleed that ended me up in the hospital the last time. So moving forward the Dr placed a vena clava filter in so this way no blood clots that form from the legs will go up to my heart or lungs. I keep asking what about the already existing one u guys thought I had over a month ago that first put me in the hospital
They say oh it not mentioned in the last 2 CT. Well no they only did abdominal one pelvis not chest and abdomanal and pelvis.
I hope this makes some kind of sense. Not good with words. Just getting ready now have to go for my blood work and chemo within the hr and half. On the other hand my gf from Alberta came back down here and has now decided to stay with me. So I got a permanent roommate for now. So nice to not be alone in all of this. Sure my kids been coming and calling more now since she showed up. I'm like oh yeah what happened to when I was by myself you guys only maybe called 1 a week. But I guess after my
hospital Dr spoke to my daughter and said hey this is what going on this is what we got to do. Do I think they finally realized oh I guess mom right this is getting worse.
But my sister coming in again for a longer visit this Tues. So this is really nice.
OK got to go for my blood work and then chemo. They are doing abraxane 1 a week for 3 weeks then 1 week off then back to the 3 weeks etc. They feel the last time I switched to this I can handle this better.2
