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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@ToughAsTeal I am so sorry you have Covid. I am just getting over mine (we avoided it for 3 years). Definitely not my idea of a fun time! All I can say is rest and more rest. I am finding my shortness of breath worse and it has turned into a full blown cold. Having said that I am feeling much better. Hang in there!!0
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@Fearless_Moderator so glad you are on your way to feeling better. Sounds like you are being well taken care of and monitored. Seems like there is never a dull moment in our lives!! My friend Penny who didn’t think she would like a full month in Mexico booked the condo for next year and I plan to go! 🤞
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Hey @Strongwoman you ask a good question and one that pops up very frequently about scans and the like showing nothing new but pain or discomfort suddenly appearing with now no explanation. And waiting for answers can be pretty frustrating. All I can say is that despite our reliance on them, scans and ultrasounds and the like don't always show the entire picture so it's the right thing to push for answers in the absence of any clarity available in those reports. There are also adhesions/scar tissue which doesn't normally show up on scans. I used to get pockets of discomfort from time to time and the feeling was as if an adhesion was pulling, which actually was the cause. But definitely try not to lose sleep until yur visit next week. Try to dwell on the good news you did receive and you can deal with whatever the cause of the ongoing discomfort when you have more information.2
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Hi ALL.
Sorry to hear Covid has been making the rounds. Take care of yourselves.
It appears that I now have drug-induced high blood pressure. The chemo Dr suggested I get in touch with my GP to discuss...do something about it. I am going to do close monitoring for a few days before I call my GP to see if there is a pattern. The first reading is quite high, but then it goes down...not to normal, but not too bad. Not sure what that means. Has anyone else had to start blood pressure meds as a result of chemo? Will the situation correct itself once a particular chemo/med is discontinued?0 -
@Strongwoman
i am reading your latest symptoms and have to say I have been stressing because I am feeling the same. I blame it on Covid and all the coughing, nose blowing and diarrhea that goes with it. Lol!! But seriously, symptoms like that are always worrisome. It is so hard to drill down when so many things are happening at once. The best we can do is monitor and keep checking. Overwhelming sometimes.0 -
@Fearless_Moderator
Thank you and no, I am not losing sleep over it....just had 2 weird dreams in a row but last night was good. I keep my mind off of things by working on my Legacy projects and then normal stuff like cleaning, laundry etc. Still writing as well which helps...rn I am watching a no mind show called "Unbreakable Kimmy Schmidt" while knitting. Dinner in oven.
@GloHo I did not have high blood pressure while in chemo but recently I have been put on a blood pressure medication due to it being high. This may be a result of the reduced kidney function or something totally different. I was put on a calcium channel blocker. I have found that for myself, my blood pressure is low (more normal range) when I wake up and then it increases throughout the day. I mark down things I have been doing before I take it as well. Like if I was vacuuming, laundry, having an emotional day, etc as they can raise it slightly too and jogs my memory when asked about it in an appt. I have a black book that the fam knows has all that stuff in it, just in case they have to call my nurses. They can look at it and answer questions they may have if I am unable to and when I last took meds etc.0 -
@GloHo welcome. Glad you're with us today and yes I now have ongoing BP issues as a result of a combination of chemo and anxiety. Over time my chemo has been changed but there's been no effect on my BP. Looks like I"ll be on BP meds forever. The anxiety is new though. For some reason every time I go into chemo my BP shoots up way out of normal and they either can't get it down or sitting and mellowing for a half hour works to get it down. Don't fool with it too long though gal. You may be like me where it goes up and down like a yo yo or like others where it's constantly up. Either way you need to get it stabilized. Although I have to warn you the process to get the right med and dose can be a real pain. Your GP should be the source of answers to your questions though. I"m only speaking from my personal experience which may be entirely different from what you're experiencing.1
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@GloHo Good to hear from you. Yes many of us get chemo induced high blood pressure. Mine is mostly from Avastin but other drugs can cause it as well. I bought a BP machine for home and travel and took readings twice a day till we got it stable. It has been stable for a couple of years now. My husband now uses my machine because he has developed high BP which I am sure I have caused. 😂.They are are a handy thing to have and give some peace of mind. I would ask your doctor about it.0
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@Taita
I am sorry to hear you are having the same symptoms as well. The other thing I have been noticing is my bowel movements have changed. So I will be mentioning that when I go on Monday as well.
As I do my writing, it is one thing that I am expanding on is how it feels to be 'one of us' on a day to day basis. Things like....a washroom trip is not just a washroom trip. For many of us it is stressful. Is there any change in our urine, colour, flow etc. Bowel movements are analyzed as well. Things many of us used to take for granted pre-diagnosis. These are things that people don't see and do not have any idea we go through daily. Of all the books I have read on death and dying and grief related to cancer or terminal illness, I find that type of thing is what is missing. It is for me cathartic but I also am hoping that something will be done with it somewhere down the road.1 -
Hi @Taita. Good ot see you on with us although I"m sure you'd much rather be on that trip you had to cancel. Covid sure is making the rounds for all of us all of a sudden. LIke you this was my first attack. So strange though that my husband, who was allowed to be with me at the hospital and visited every day didn't get it. Then again maybe he did but was asymptomatic.1
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@Strongwoman
You make a very good point about preparedness to live with this disease. Like you and many others the seriousness of urine and bowel functions, breathing and other normal functions often comes as a surprise. I can recall finishing first line treatment and deciding to go on a diet to lose a few pounds so joined Weight Watchers. After two months I noticed my bowel function changing significantly only to find out from a nutritionist our systems don't tolerate high fibre diets that well.1 -
@Fearless_Moderator
So true about not tolerating high fibre diets.
@Bojenka You with us today? How are you doing?
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@Strongwoman
Good points. I like your idea about keeping the notebook, as well. I keep all of my notes in my phone...which is absolutely no use to anyone but me. I'll have to look at starting a daily diary with key points that would be useful in an emergency.
@Fearless_Moderator
Yes...yo-yoing sounds about right! My husband went through the blood pressure stuff years ago and I recall the process he went through. So have some knowledge and will prepare myself best I can. I was also just thinking that I have not been exercising since I had that whole hand/foot syndrome stuff. I am going to get back to it (just a 30-minute treadmill walk each morning). Maybe that will help a bit. I'll start tomorrow and starting tracking it to see if there is any improvement.
@Taita
Yes...I have a home monitor that I can transfer my readings to my phone. So it will be very handy when I do go to see my GP. I am also on Avastin...and suspect it is the culprit.1 -
@GloHo
I ordered my BP machine online and it was under $50 with taxes and delivery. It takes my pulse too. It is rechargeable via a computer or outlet which I like as well. Mine was WHO approved. There are many out there if you are looking to get one. Even though mine is being controlled, I take it daily and sometimes a couple of times a day, same with temp esp if I feel like I am having an "off" day.0 -
Hi, yes I am here and doing better. Watching what I eat, observing body functions yup bowl movements, kind of new to low fibre diet. Making sure to hydrate. Working hard to stay as healthy as I can.0
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@GloHo
I can almost say for certain that the Avastin has a major influence on BP. I don't know anyone who's been on it who hasn't ended up with needing BP meds. Avastin just made my existing BP worse. But the exercise should help somewhat; at least keeping in a reasonable range so that's good thinking.1 -
Adding to my earlier post, I still get mid back and right flank pain. Oncologist at a loss where the pain is coming from. He mentioned a potential option is radiation for the one inch big nodule on my liver.0
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So ladies it's 2pm already and time to say goodbye for another week. This time next week we'll be into March.....yahoo, not that that guarantees an early spring but it does layer on some hope of warmer and sunnier days ahead.
Have a good week all and see you next week.
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@Bojenka
Yes, it is different and almost FMO (Fear of Missing Out) for us as we adjust our diets due to health reasons. None of it is because we want to, it is due to what our bodies want or need.
I use a product (forget the brand name) that is a powdered Veggie Green daily. I don't have an appetite in the morning so I usually do a scoop of that with my Restoralax and whatever meds I need for the morning. Gives me peace of mind that I am getting something of value even if the rest of the day isn't good for eating. The Ensure drinks, I try not to do as I have a sensitivity to milk and then get quite the tummy aches. I do them if I have to but prefer someone to make me a smoothie with some protein powder instead.
You will figure out what you need and what will work for you. It is a delicate balance and lots of trial and error.1 -
I am finding that I am getting more anxious about everything. I used to be so chill...take things as they come and then deal with them. And I still do, to an extent. I research and that prepares me which makes me feel better and more relaxed in the event something should come up. But, as @Strongwoman mentioned, there are so many things, on a daily basis, that affect us, that I find my mind wanders back into the realm of cancer more frequently than I would like. I noticed the anxiety yesterday as I was waiting for my chemo infusion...my blood pressure was high...have to talk to the Dr...infusion or no infusion...how is my hand/foot syndrome healing...that's good...infusion = side effects.
@Fearless_Moderator
Thanks...guess high BP is going to be my new norm.
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@Strongwoman… I do my own shakes as well and I have the Veggie Green. Much healthier than Ensure.0
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I posted a comment , but it looks like it didn't go through. Not quite sure what is going on, something to do with the new computer or more likely the user!0
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@GloHo
Anxiety gets the best of us. I try my best to either find humour somewhere in the day or watch it. I am being more mindful and finding something to focus on and appreciate in a different way. For example.....the ice storm last week was terrible but holy...did it look beautiful on everything when the sun shone on it!
My go to when I am very anxious or upset is to clean. Then I get into trouble because I have done too much. Just can't win sometimes!
My nurse said people can go one of two ways....my way (mania) or preparing for the next phase or the other extreme which is bedridden with some depressive symptoms or depression. I think I would like to stay on my side of things for now. I know I am preparing for when I can't do things later. Some days though.....it would be so easy to stay in bed for the day.
@Bojenka
Good to hear and yes it probably is better than Ensure.
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@hope2022
Hey Girl... what were attempting to post? I have had that happen and it is the post comment button that sometimes doesn't work for me.
How are you?0 -
Just wanted to welcome Fearless back and sorry to hear there seems so many have covid. It was a bit of a long comment. It it too late to try again.0
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Well ladies. I am signing off. Wishing everyone some restful and healing days ahead. Chat next week or will chat with you if you post anything before then.
Take care all!0 -
Have a great week everyone. Thanks for your support!!0
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@Strongwoman.. hope you are doing ok, this journey we are all on can be challenging at the best of times.
@Fearless_Moderator...happy you are back and getting better. You are one tough gal!
@ToughAsTeal...so sorry to hear that you have covid.
After 3 treatments of Taxol and Avastin my ca 125 dropped to 14 from 50. The ct scan after 3 cycles showed no new spots, other spots too small to measure on ct and larger spot growing into the spleen had shrunk by just under 1 cm. Of course I was happy and felt things were heading in the right direction until last week my ca 125 went up to 19. My stomach has been rumbling a bit lately, but put it down to bowel issues from 4th treatment last week. In my past experiences when ca starts to rise it has been the cancer growing again. Not feeling too hopeful right now. This is a bit of a crazy thought, but an hour before I had my bloodwork last week, my sister called to say our Mom had passed away suddenly. I am wondering if stress can effect blood results...probably not...really reaching here I know. I guess treatment can stop working anytime, but thought it would just continue in that way after getting the good results. I hope this all make sense. This disease really makes me crazy sometimes! Sorry for the long post.0 -
Hello everyone
@Fearless_Moderator - so happy to see you back and getting better. I'm sorry you went through what you did. You are one tough gal
@ToughAsTeal - so sorry you have Covid, hope you get better soon.
I am a little perplexed right now with my last CA 125. After 3 treatments of Taxol/Avastin, my ct showed no new spots, all but one spot too small to be measured on scan,,,and the larger tumour by the spleen had shrunk by just under a cm.
My ca had dropped from 50 to 14, so I was happy to see those results. Now ca125 has risen to 19, which in my past experiences is definitely a sign cancer is growing again. I guess treatment can stop working anytime, but I thought with the initial response it would continue in that direction, but maybe not. I will talk to my doctor tomorrow and find out what comes next. I know this a crazy thought, but an hour before my bloodwork last week, my sister called to say our Mom had passed away suddenly and wondering if stress has any effect on bloodwork. I'm sure that's not the case, but kinda reaching for a little ray of hope here.
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@hope2022 Your issue with a comment not appearing is resolved above. As an FYI to all, if you hit Post Comment more than once they go into a Spam assessment folder in the back end for me to review. No idea why the system does that but it's a quirk I've learned to live with. All I need do is mark the original NOT SPAM and it goes back to where the comment was intended originally. The additional posts that appear from hitting the Post button I just delete.
Regardless, very sorry to hear about your mother. My sincere condolences to you and your familly on your loss. And yes, personally I truly believe stress can impact in ways we often don't expect. Quite doubtful though it could drive a CA125.
Keep well and hope to see you with us on one of our next Thursday chats whenever it's convenitent and we can be of help. 0
