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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Good Afternoon Ladies,
I will not be joining you today. I am being kind to myself and following my advice that I have given others. I will be going for a nap. I cleaned this morning and am tired now.
Update, I have been for bloodwork, urine sample and ultrasound. Bloodwork is normal, urine showed nothing, ultrasound confirmed findings of last CT scan. I have been experiencing lots of symptoms to necessitate the testing that was done. Of note is increased left flank pain that I have difficulty getting through without pain meds. So the findings did nothing to assist in discoveries in this area. I met with my Oncologist on Monday and we have 'bumped up' my CT scan to next week. Due to the persistent pain, trending weight loss (I am not one who focuses on weight and never have been so it's why I use the word trending), trenging uptick in CA 125 levels since December (monitored monthly) is why we are exploring with the CT scan. Hopes are we may find an area that is the culprit and may be able to radiate it to help decrease the pain. If not, we have a picture of what is occuring and will then have the opportunity to ask what things will look like from here on out. This includes medications, outlook, timelines. I am a person who needs this to map out what my days will look like until I am unable to function the way I would like. It also allows me to have conversations with those that I need to. As well as to process my own emotions that go along with it. So that is that for now.
So as the sun is currently shining, I will go rest my weary head and enjoy the quiet of the house before everyone returns home.
Hope everyone is doing as well as they can be, look forward to reading any updates and hope everyone is prepared for the storm coming in tomorrow night.
Be kind to yourselves
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Good morning/afternoon lovely ladies and welcome to our weekly live online chat. this Thursday March 2.
March???? Already???? OMG is this year going to fly by like last. Perhaps we wish it too much in the winter but it doesn't seem to know when to slow down again. Late spring, summer and early fall can take all the time it wants. And started back on my chemo yesterday. If it continues to stabilize my cancer like it was doing before I got ill, then I'm revelling in assuming I'm going to have another summer and maybe more to enjoy.
Right now planning out gardens this summer. Wayne goes back to work at the winery Easter weekend but they were so accommodating allowing him only 4 days a week so he has some extra time at home. I am determined this year to plant the rose garden I've been promising myself and a cutting garden of dahlias; tubers for the latter will be available soon and I understand sell out pretty quickly. No experience with either so we'll see how I do later this summer.
ToughAsTeal won't be joining in today again. She has some home help coming and it sounds like she's really not up to joining in anyway. Let's send her some healing thoughts. She's going through one of those rough patches we all get from time to time.And now for our chat. I'm here. Hopefully others will join in throughout the hour. Please say hello, let us know what's on your mind or how we can help. All welcome !
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I am so sorry to hear this Strong Woman. I enjoy your positivr feedback. I send you my hugs and hope you get so much better, Missing our chats.0
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@Strongwoman thank you for sharing your journey with us. We all have to prioritize our own needs as they arise and like you I won’t be joining as I too am having a nap. The residual cold from the Covid as well as my double treatment Tuesday is calling for a rest. We leave for Europe with our family on Thursday. I am determined to be as well as I can be. Have a great weekend everyone and for those of us in Ontario buckle down Friday night. Sounds like a doozie of a storm coming. !0
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Okay ladies I have a chuckle for you. I take my “naps/rests “ on our sofa in the living room with the TV down low. Tom often comes and sits beside me which is sweet. However today, just as I am about to close my eyes he has started snoring like a banshee! I am laughing at the irony. He is napping for me I guess. Lol!! Never a dull moment in life which I ❤️.1
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Welcome back @Fearless_Moderator.
I started Day 1 of chemo, carbo/taxol last Thursday for recurrence. Its be'en hell. Weakness and fatigue. In bed for days off and on. Yesterday started feeling a bit better but my legs are still very weak. Going to try to get out today if I can manage.
What does anyone do to strengthen the legs? I wobble like a duck.LOl I do use a foot massager when I can for my feet.
I hope my next treatment is much better in a few weeks.
I hope evetyone here is doing the best we can. Hugs to all. Barb0 -
@Strongwoman and @Taita
You'll both be missed but clearly doing the right thing; answering to what your body is telling you it needs. Rest is so important to our health, even without something like cancer and yet we often fight the urge.
Taita, you're so resilient I'm sure you'll be in great shape for the trip. Safe journey and do send pictures again if you're able. I do love to live vicariously if I can't do it myself!
Strongwoman take care and get that rest. If radiation is suggested as a possibility do consider it I have had a problem with range of motion in my right hip almost a year now. So much so that I can't drive because I can't move my leg from the gas to the break peddle. Scans, ultrasounds and even an MRI have produced nothing to attribute the pain to other than a very very tiny tumor close tot he psoas muscle and it's effect just a wild guess. But we decided to radiate it anyway after the pain began worsening. The procedure was so easy. In and out in 5 minutes each day of the 5 I had to go in for radiation. For me, no noticeable side effects thankfully, but also no relief. But they did tell me that it can often be months before you notice the effects of radiation. Well three months later and three weeks in the hospital and I realized when I came home that 90% of the hip issue had disappeared. Was it the radiation or somewhat enforced bed rest from the hospitalization? Doubt I'll ever know. Maybe even a combo of the two.
Stay strong gals........
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@Strongwoman - enjoy your rest. So glad you are taking your own advice and listening to your body!!
@Taita - Rest up so you can enjoy your Europe vacation!! I am jealous! Can't wait to hear all about it when you return.
@Fearless_Moderator - Ahhhh...gardening. You'll have to send pics of your beautiful garden in bloom. Spring blooms, warm, sunny days...I am so looking forward to being outside a lot more.
@babs272 - I remember that feeling. I am usually on the treadmill daily (when I am feeling up to it). Not strenuous, but 30 minutes, with the TV on, early morning. I think it helps me mentally as much as it does physically. I am also at home, so if I get halfway through my "walk" and feel like I've had enough, I don't have to worry about how I am going to get home. Then, anything else I do during the day is bonus exercise.
I have an appointment with my GP this afternoon to get the BP situation taken care of. I had a CT scan yesterday and will probably not get the results until I see my Oncologist later this month. Oddly, I am finding that I don't mind the waiting period this time (hmmmm...).
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Is there anything I can do more to get my strength back in my legs?I hate that I cannot move around much as I should be?
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@babs272 thank you for the welcome back. i feel like I was gone a year not a month. So much to catch up on !
I was lucky with my first recurrence. Went right into a trial instead of chemo again (all oral meds) with little to no side effects and that lasted close to two years so my transition back to treatment was easy. Once the trial drugs stopped working though it was back to chemo...for me Carbo + Gemcitabine since I'm allergic to Taxol, and I do recall feeling the effects more that second time. More fatigued, more chemo belly, more insomnia. Do ensure you do a bit of recording and share with your care team. Perhaps a lowered dose will help, yet not affect the potency or restructure of your cycles.
My legs are weak too. I used to be a big long distance walker but with the neuropathy in my feet those days are gone. So I notice more weakness in my upper legs now along with the numbness in my feet. I would suggest if your leg weakness continues you think about some physio. There should be something available to you through your cancer centre. Mine gave me a sheet of exercises I could do at home that were quite effective in building the muscle.
Good luck with your recurrence. It's a bummer and so disappointing to get that news but I'm on my 5th now and still standing tall. It's just been a matter of forgetting about cure and instead focusing on how to live as well as possible with the disease. So far life is surely different than I had expected it to be but still fulfilling, and fun in it's own way.
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Thankyou Fearless Moderator. Between my family Dr and Oncologists and the great chemo nurses, I hope tyo get thru the rest much easier. Councilling next week, to see if it helps this time round.
Right now I am going to try yo wash my hair. A very tirering task before it starts to fall out soon. Have a good day.
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@GloHo good luck with the BP. i have discovered it's the longest worst trial and error process yet. Right now we've finally found a good mix of 4 different pills to manage my BP but have left me with hugely swollen feet and ankles. So back to the doctors to see what to add or delete to fix that problem. Right now my size 8 feet will only fit into a old pair of size 10 clogs. I hope for you getting it right is a much easier task.
As for your CT, I have lately stopped looking at my CA125 results and my CT reports. I now figure if there is something I NEED to know my oncologist will tell me. I guess I've finally come out of denial and realized that what is important is how I feel, physically and mentally and spending all my time fussing about a test result when I actually feel pretty good I'm just wasting my time and energy.1 -
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Have to go to prepare for my Dr appointment...going to download my BP readings for the last several months to share with my Dr.
Have a great weekend everyone.0 -
@GloHo do remember I have a chronic kidney problem so that exacerbates any BP issues I may have and probably cause of so much back and froing with meds. Happily I just had a call from my nephrologist to say he just reviewed my latest blood work since discharge and it looks like my kidneys are repairing themselves...yahoo. He sees me end of next week and promises to get the swelling in my feet addressed if the current improvement in kidney function doesn't deal with it. I almost hate to exclude my GP from the mix but it seems I need him less and less and I get specialists assigned to deal with any issues I might have. I know they keep him posted and I'm extra fortunate to have an assistant to my oncologist who's really capable of keeping the big picture pulled together so nothing falls through the cracks.0
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Well ladies, not sure who's still us but our hour is up and like almost everyone else I could use a nap too.
Great discussions today so thanks all for sharing.
I"ll leave you with a little Bonnie Raitt to think about this week: "LIFE GETS MIGHTY PRECIOUS WHEN THERE'S LESS OF IT TO WASTE" Do spend your time this next week on that that is precious to you. You can't take back the past. You can't fortell the future other than as a guess. Focus on make TODAY the best that it can be.
Big hugs to all.....
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Hi everyone sorry i missed todays talks. I've developed a cold. I took a rapid covid test their 2nd day in and then 4 days later for it to still show neg. But yet from what i read about this omnicron virus can be exactly like a cold too. My oncologist is quite certain that the test would of showed positive if i had covid to some extent. Been resting on my couch for much needed rest myself. Chemo on hold for this week.
Reading everyone's talk about BP. Mine had to be adjusted a few months back so i am on 2 different meds for that. And i have also noticed issues now more with swollen feet and ankles myself. My oncologist and dr are monitoring it, as i recently had a appointment with my gp to go over my reading the last month or so to see if anything needs further changing.
I have a follow up apoint. tomorrow though with my gp from seeing a dr at a walkin clinic to assess this cold. Wow I cannot remember last time i had a cold maybe yrs and yrs ago.
My thoughts and prayers to everyone. On the other hand i saw a flock of geese coming back so thats a good sign spring just around the corner.2 -
Hi @babs272 and everyone. Apologies this is so late but have been unable to attend on Thursdays and seeing the comments on leg strength now so I thought I would add. Over the past year I have put some effort into better understanding the impact of exercise, muscle conditioning/sarcopenia on cancer survival rates (maybe) and quality of life (certainly). Evidence is beginning to indicate that exercise is one of the few things we can personally do to improve outcomes. (OCC webinar, May Clinic etc) I made quite a bit of headway last year with improving resting heart rate, increasing muscle mass, flexibility, endurance through various resources. I was not able to access physiotherapy - mostly afraid of catching covid and not wanting to risk treatment interruption at such a critical stage. So my resources are mostly online but my oncologist was very pleased with results.I think the whole topic of exercise and fitness might deserve a longer conversation in a different thread and anything I suggest would need to be approved by your medical team but your comments struck home @babs272.
I had the same problem with my legs during carbo/taxol and immediately after surgery but it was upsetting. So finding something that I could actually do and would help build muscle was a challenge. I found this on youtube and started adding these free Tai Chi 5 Minute a Day modules and it really helped. https://www.youtube.com/@Taiflow
Tai Chi worked my core and my legs in ways I did not expect but I could do it and then I increased. I took it VERY slowly. I must have done module 1 for a month before I moved on to the others as I was extremely weak. In fact the first time I tried I could only do about 2 minutes.
Now I subscribe to Taiflow and keep going with it although my current Taxol/Avastin regime has taken some toll on my strength I started with so much more than last year.. I find the mindfulness, breathing and the sheer elegance of practicing Tai Chi helps me in other ways too.
I have a bit of a resource library for the different stages of strength and fitness including pelvic safe core, gentle barre, dumbells yoga and others for osteoporosis and would be would be happy to share those if they would be of benefit but would want some guidance about how to do this so its organized and folks can find them easily.
I hope to attend tomorrows discussion now that my Thursday Wellspring course as finished. thx1 -
Good Afternoon Ladies,
I can tell by the activity on the site the past couple of weeks that there is a lot going on with so many of us. I do hope that many of you have joined in today and I welcome any of you new to our Teal Thursday. There is no agenda for those that are new, basically join in when you want to and/or have something to ask or add in. Refresh at the top of the page to see any new posts by anyone responding or adding a post.
Today the sun is shining and glistening off the snow here in Ontario. Temperature wise it is not too bad and perhaps some snow is coming tomorrow?
So, my fellow friends.......any updates? I had my CT scan last night and am waiting my results. If you have not been following along, it is indicating by my increased symptoms, decrease in weight (trend down) and increase of CA 125 level (trend up) that there is a possibility that there is growth again. It was stable for a bit but I do not believe that to be true now. This CT will confirm it and if we can pinpoint anything that may be causing me the increased pain, we may look at radiating that specific site. That would involve a consult with radiologist, oncologist etc to determine that and then what it would look like. It would be a small area they would do as mine is diffuse and too large to radiate everything. So stay tuned for more outcomes.
What has everyone been up to? I did my best to give my hubby a memorable birthday. The boys and I bought him a beautiful case to hold all his watches...he collects them. I ordered a cake from a local bakery....look at this! Crazy eh? I could never in a million years make one like that!
I managed to get my big piece of pottery in to get fired. I have had the piece for about 1 year. I worked on it, then put it away and then worked some more. I did a lot of layering and wait until the paint dries before doing more which helps me not to sit too long in one position. I have included a pic of it unfired and not totally painted so you can see what I am talking about. I have been knitting and have included those pics as well. I did a baby blanket just because and then the sleep sacks are for my friend who is expecting for the first time. Now I am going to do up 2 each for my boys to put away in case things turn bad. This way, they will have something from me that I would have done anyways. They are too young (or I am not ready for it yet) to have one yet. But babies come when babies come!
So ladies, let's get this started and see where it goes today!
In my Palliative group yesterday, we spoke about us (those that are ill) really dislike it when people say things like "stay strong" etc. We understand it is because they don't know what to say but really in our heads we are thinking..."how much stronger do you want me to be?" "do you know what it takes to keep functioning daily"? So that was a topic and we all joined in about it all. We have also posed the question(s) about what happens when we start to decline and what determines staying at home versus going to hospice if that is our choice. We will be circling back to it and when I find out more info, I will post it.
So.....I open the floor to you ALL0 -
Any one out there today? Ready to join in?1
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Hello @Strongwoman and to all of you who are attending!
My name is Fancy, and I am the moderator for the French side of OVdialogue.
We don't have Teal Thursdays on our side, so I am jumping it to see how it works.
As for all of you, I too have been diagnosed with ovarian cancer. I am a BRCA1 carrier.
I have experienced 2 recurrences but am doing fine now.
How about disliking when we are told we are courageous?
Fancy
PS. am unable to open your folders (pics), will try again
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Our leader @Fearless_Moderator may join in later or not until next week. She is out at an appt and does not know if she will get back in time to join in. So hard at times, being at the mercy of our team and the waiting we do. I am so used to it now that one just goes with the flow.0
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Hi I am here today just joining a bit late.
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Good Afternoon @fancy and welcome to our group.
Yes, the 'courageous' and 'you're a fighter' is another one. What other choice do we have? Well in reality we have a choice but initially it is of my opinion too soon to make a decision like that.
Glad to hear you are NED currently. Were your recurrences far apart or close together? With the BRCA 1 carrier, do you have to watch or do anything pre-emptive breast wise? Regular checkups (mammograms) but anything beyond that?1 -
Hello @mjmck21
How are you doing this week? Any updates or anything you would like to discuss?0 -
@Strongwoman
Well...aren't you the busy bee! I love the cake you got for your husband...it looks yummy! Your pottery...OMG...that is amazing! I was thinking about doing some baby stuff to leave for my youngest son who is not married yet and my granddaugher, but your sleep sacks are so cute...I may do a couple of those first! Beautiful colours on the blanket!
I hope you don't have to wait too long for your CT result and that you can find the appropriate move forward that will help you along.
I am still waiting for my results - I will get them on the 21st. I am distracted by managing my high blood pressure right now. I have been on my BP meds for a week now. The pressure has come down, but to the desired reading that my GP would like. So, on her advice, I will be start taking two tablets tomorrow and see how it goes.
I am having really weird ups and downs throughout the day in relation to fatigue. One minute I feel all clear headed and have initiative to do things and the next, I've got a headache and am tired. Ah well...I just deal with it as it comes!
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Hi again!
I was diagnosed back in 2017, and experienced my 1st recurrence in 2020.
The second one occured in 2021, and I firmly believe stress caused it (so much going on in my life at the time, it was crazy!)
I had 18 chemos last year (avastin & taxol), for a big total of 30 chemos.
And yes for the breast checkups (1 mammogram and 1 IRM per year).
Here in Montreal, radiation doesn't seem to be that popular. But should I experience another recurrence, I'd be happy to hear all about it.
Thanks for welcoming me,
PS. love the cake!!0 -
@Gloho
Welcome and thank you! Yes, I am working on my living legacy stuff to leave behind. I do my best to think of what I want to do for both of them and am attempting at completing them. I think having many projects helps because then if I don't feel like doing one thing, I can move on to another and feel like I am getting somewhere.
No, I will receive an email when the report is up and will be able to view it. My guess is by end of day tomorrow (at the latest) I will be able to see what is going on. I have a video chat with my Oncologist on Wednesday and then probably will have one with my Palliative doctor as well.
Blood pressure is a funny thing and takes a bit to stabilize. Be patient, it will come and they will get it right!
Yes, lots of ups and downs with this disease and we all experience it a bit differently. I have episodes that I have such great fatigue that even if I am standing, I want to close my eyes and go to sleep. So, I now pretty much nap every day or I can't function later.
Take things as they come and when you feel good, do what you can and be kind to yourself. Dishes will always still be there.
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Thanks @Strongwoman. I have settled into the weekly Taxol/Avastin regime and most of my symptoms are reduced. Pain in chest, back, abdomen, shortness of breath etc. CT scan in December showed the recurrence was pretty much everywhere which sent me into so pretty dark days for awhile so I am glad that treatment seems to be working. CA 125 is now 1450 which is high I know but down from 12,000 in December. Will have another CT scan end of month and really hoping it shows a reduction. Im dealing with the usual side effects - hair loss, shortness of breath, perioidic fatigue and muscle weakness and some rashes on my face, nose bleeds, lower neutrophils etc.
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@fancy
From what I have been reading from other posts here, radiation is not that common here either. For the HGSC gals, it seems to be different combos of chemo to find the right cocktail for that individual and that recurrence. For us LGSC gals there are not many options. Chemo does not have much favourable outcome. That leaves an oral chemo called Letrozole and there is a new one called Trametinib. I have been on Letrozole since last year and find the side effects are fairly minimal now. I tried Trametinib and had to go off of it in 2 wks. Oncologist in London said it was the worst case of a rash he has seen yet. Great eh? Took over a month to get rid of it. So, if the Letrozole is not working, there are no options left to my knowledge. I have been aware of this for a long time and is why I work on my Living Legacy stuff. What I want to know this time around is, if it is worsening what picture are we looking at now. I need to push myself accordingly at home to complete the things I want left behind and enjoy life as best I can.
Thanks about the cake....crazy what they can make now.
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