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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@Taita
Sorry to hear about your hernia. Operable or inoperable. The Radiologist I saw this past week was concerned mine might be strangulated. You all good in that regard?
So difficult as many times they leave them alone.
Will be so nice for you to be able tonsee again. I am sure you are missing many aspects of that.
And most definitely, every holiday we celebrate is another memory for ourselves and those around us. Something to be cherished.1 -
@Strongwoman I'm so sorry to hear of your challenge this past week. I do hope it's not a repeat challenge to be expected. Great that your nurse was there and to experience an episode and be able to get you pain support so quickly.
How are you otherwise?
Easter will be quiet for us too. Just Wayne and I but an improvement over past years when he would be working at the winery Easter Sunday so we'd either have a late dinner or put it off to Monday. This year we can enjoy the Sunday with our traditional lamb. Any traditions you and family hold dear?1 -
Very sad news! I will be forever grateful for her continued support and encouragement and, yes, that wonderful sense of humour. My thoughts and prayers are with Laura's family and friends. RIP ToughAsTeal.🙏1
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@Fearless_Moderator
Yes a few challenges. More emotional. Laura's passing, another friend's hubby in a bad place as he watches his spouse deteriorate but spouse thinks she will be better and get home but not a reality. Dealing with my hubby being in complete denial about it all. It will pass but is a lot all at once. My chat with my neighbour last week helped a lot and she gave me some food for thought.
Definitely looking forward to the nice weather next week.
Have a Renogram and Oncologist appt next week.0 -
@Taita so glad to have you back but sorry to hear of your latest challenges. Why do so many of us have hernias? And why are they so reluctant to repair them for us. It took me four years to get willingness to repair mine and then when she went in I'm told her encountered so many adhesions she coulddn't complete the surgery. Sigh! Mine protrudes a bit or at least it's the intestine I'm told. And like you I feel like I'm about to give birth to the Alien at times.
As for the cataracts, I'm told I have them both eyes but at very early stage. That said I've noticed my vision seriously declining the past couple of months and wonder if it's natural progression or chemo related. Guess I 'll be adding that one to my list of things to discuss with my oncologist.
How was the ramp down from the trip? You must have been in high gear while there. I always find I'm still UP for a few days when I return and then do a total crash for a couple of more.2 -
Very sorry to hear about Laura, I will remember her sense of humour, despite the illness. She has her wings now.
My update is that I had radiation on Tuesday since one of the painful spots was a big mass. It’s wait and see now. It’s been 4 weeks of pain medication ie getting the right one and now still trying to figure out the dosage. Some days I feel loopy and giggly as well, like you @Strongwoman.0 -
@Strongwoman
I do wish we had a site like this for our caregivers. They are left at such a loss to be included or the role they play respected outside of our Sister community. I do find more and more asking if they can join here to help ground them an allow them the opportunity to better understand how to support their loved one. And for the women I do approve membership. Unfortunately male partners are not permitted here but there doesn't seem to be anywhere to refer them to. And yes, like your husband I hear of so many who are in denial. I'm into year 7 of treatment and only in the last year or two has my husband begun to initiate conversations about my own eventuality. It will come gal.
Good luck with your appointments next week. We seem to have moved my kidneys in to a better place so I actually got treatment 2 in my cycle on Wednesday. As long as I can keep my GFR and Creatanine scores 'reasonable" I might just get a full cycle in this month.0 -
@StrongwomanIt was so fortunate that your nurse saw it firsthand and was able to connect with oncologist to get it resolved so quickly!
@Taita Sorry to hear about your hernia. It will be nice for you to get those cataracts fixed.
Speaking of eyesight... I am sure it is a side effect of chemo! Mine has been deteriorating and I was told to wait until I was off the drugs...then started a round of different drugs...still no improvement although I think they are not deteriorating as quickly now. I am currently off drugs altogether, so it will interesting to see if there is any improvement before I start the next drug(s) in my journey.
I am in a bit of a mental state since being advised that my cancer has progressed and my treatment stopped. The new term for me now is "peritoneal." I avoided thinking about it for a few days, I just couldn't go there. I have since done my research and am ready for my next oncologist visit! I have an appointment with the medical oncologist on the 17th...this waiting is horrible! I expect that my next step may be a clinical trial unless the oncologist suggests a dose-dense treatment plan or some other drug. In any case...I am prepared on all fronts...drugs, clinical trials, other treatments like radiation or HIPEC (if I'm a candidate?). I am trying to stay positive because I still have options...but it is difficult at times.
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Well ladies, it seems this about time to say goodbye for another week. Stay strong, and optimistic, and like Laura...determined. But don't ever lose that keen sense of humour almost every one of you possess. Wallowing in misery is fine from time to time if it's not all-consuming. But laughter is appropriate and welcome every single minute of the day, so keep looking for the good things, the fun things and focus on those.
Do enjoy the holidays this month. It's a chance to reflect, enjoy family, anticipate the nice weather and wear that new Easter bonnet (remember those days?). See you next week.
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@GloHo apologies that I sent the bye for now before I noticed your last note so taking a few extra minutes to respond. Yes I know how intimidating the word peritoneal can be. That's my primary cancer. But do remember I've managed to live with it for seven years now which would have been considered near impossible when I was first diagnosed. And as for progression, I accepted day 1 that treatments were likely not sustainable so it' was a matter of maxing out their effectiveness, taking a break and then being open to whatever might be available next. So I've done from original treatment of Carboplatin/Gemcitabine to an Olaparib clinical trial for two years, then bact to Carbo/Gem for six months, then Cisplatin/Gem for two months, then Caelyx/Avastin for a year and now, after a bunch of false starts following Christmas back to a regular cycle of Gem only. Right now I'm told there are really no further options if the Gem doesn't work but I go on faith it's not going to be the end and we'll be able to extend a bit once this begins to fail me or doesn't work at all. So I just live me life in 3 - 6 month increments because that timeline for me seems to work.
Stay strong gal. You have far more resilience in you than most. Ask your questions, insist on answers that help you educate yourself and make informed decisions and always remember we're right there with you all the way. You are not alone.
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@Strongwoman Thanks for taking the time to respond…much appreciated. If I’m going to do a trial it will probably be Nemvaleukin alfa + Pembrolizumab. It’s phase 3, and no placebo, so maybe… Have you heard anything about this trial/these drugs? I’ve read an article and it sounds like it’s worth a try. We’ll see if that’s the one the medical oncologist is going to suggest. I know my oncologist was going to recommend it. There are just so many different factors to be considered. I believe I meet the criteria and it is actually local for me…so no travelling and couch surfing 🤣. Your journey gives me much hope…thanks for sharing. Have a Happy Easter. 🐰0
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I am so sorry to hear about @ToughAsTeal.My thoughts and prayers 🙏 to her family. She was such a strong and brave person and always encouraging us even though she herself was going through alot.0
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@GloHo
That was @Fearless_Moderator that responded to you. I am reading the remaining messages now.
It IS difficult. That is for sure. Like @Fearless_Moderator, I too was diagnosed with primary peritoneal cancer except I have LGSC as you both have HGSC. The thing to remember is that it is treated exactly the same as Ovarian Cancer. Most people don't know what a peritoneum is and is difficult to explain to people at the best of times and thus is easier to say Ovarian Cancer. All of it is definitely difficult to wrap your mind around that is for sure.
Now you mentioned your treatment has stopped. Is that the current course of treatment? Are there still options left that are viable for your type of cancer? It seems from your past that there may be options left for you and that you are open to discussing and/or exploring them. That is good. The mental/emotional piece that comes with it is difficult. It is also difficult to wait but I find that I have really thought things through by the time the appt comes around. Sometimes things far away and then they are upon us before we know it.
@Bojenka
From what I understand about radiation, I believe it takes a couple of weeks before it starts working. I do hope it does work for you, that the pain lessens and they get the right 'cocktail' for you soon. My boys both laughed at me when I was loopy and were great at making sure I was safe while like that.
@Fearless_Moderator
Sorry to hear about your kidneys and glad to hear they are settling out a bit. I go for my renogram on Tuesday which will be interesting to say the least. Curious about the process and results as well.
It is difficult for caregivers and some programs out there for them run during the day only so that can prove difficult depending on the situation. I don't have expectations from my family anymore. Focusing on me and they will fall into the space they need to along the way. Always open to speak with them but if they don't want to, I must leave them to their own grieving process. I believe we will be conducting another family meeting with the Palliative doctor after this next round of testing. That should help them all and/or expose areas they are having difficulty with. In thr meantime, I will continue on my journey and start finishing up some of these Legacy projects as they are important to me.
For all others out there, I wish you all the best week possible in each of your situations and look forward to hearing how your week went next week.
Take care all...0 -
@Strongwoman Oooops! Thanks for correcting me and sharing with @Fearless_Moderator. You both are fabulous supporters!!At this point, I still do have some options and am focusing on that to try to keep my positivity up.0
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So sorry to hear about Laura’s passing. Thank you for sharing the news and her obituary. I had been worried and thinking about her.She will definitely be missed for her positive attitude, sense of humour and her “Tough as Teal” personality. May she rest in peace. ❤️0
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"Tough as Teal" passing is hitting me. She was the first person on this forum to reach out to me personally about my illness and offer support when I was diagnosed and had surgery ahead of me. So helpful even though she had her own struggles to manage. I will always remember her kindness and yes, wonderful sense of humour. I'm so sad. 0
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@mjmck21
I feel she has impacted many lives on this forum. I had a connection with her for a short period of time and cherish every moment. She definitely impacted my life. I was able to see her while in hospice and can say she was comfortable and peaceful when I saw her last. The visit impacted me greatly in many ways but am glad I went. The last time I was there, I met the family and let her daughter know how proud she was to have completed the sweater she had been making her. Although I, personally, didn't know the family it was important to me to relay that to her daughter. For all those that do legacy projects out there, it is worth the effort. Someone will tell the loved one you are leaving it for how important it was to them to complete it. She was an incredible woman with tremendous strength and fortitude along her journey. I have been left with a lot of 'takeaways' from her journey. She will be missed by so many and will remain loved forever.1 -
Im so sorry to hear of @ToughAsTeal passing. She was a strong passionate lady and i will miss her wisdom and strength. Ty so much for sharing her obituary. Prayers and thoughts go to her family.
I myself haven't been doing well this past week. The meds from h pylori caused allergic reaction where i swelled and looked like heck. My daughter took me to hospital. And we just went camping for easter. Well i guess being that my kidney function seemed to drop the meds started also causing some aki symptoms. So now not on those. Almost completely stopped urinating too. So injection shots at hospital and swelling calmed down. So now my creatinine is at 111 and my kidneys function at 48. Ok so no more those meds have to be closely monitored noe nurse said. Resting at hime now urine output has definitely picked up tg. Will be putting in a call to my oncologist and asking some questions as i am suppose to have contrast ct on tues. Gp appoint on wed go over the whole thing too. See what next step is. Had massive kidney pain but seems better today. Even started measuring my urine output to get record. My son thought i wasnt drinking enough water because it was so brown during our easter camping trip. But it was actually a side effect of the metronodazole i was taking that i stopped. Trying to say yes i drunk 6 bottles of water it not coming out.
Very fustrating when you know something is happening but then you get one of your kids thinking your imagining your symptoms until u end up in hospital.0 -
So sad to hear about the loss of @ToughAsTeal. It's so tough to lose another teal sister. She raised an impressive amount fundraising for our local Walk of Hope and my prayers and thoughts go to her family. I'll be thinking of her at the Walk in September. May she rest in peace. 0
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WELCOME TO OUR WEEKLY ONLINE LIVE CHAT ON THURSDAY APRIL 13. iT'S GOING ON 1PM EST AND TIME TO INTRODUCE YOURSELF AND TELLS US WHAT 'S ON YOUR MIND TODAY?
And if your weather is anything close to or better than the almost summer we're experiencing here in SE Ontario where I am, it's time to fluff up those tutus and dance like no one is watching !
Oh behalf of ToughAsTeal I thank you for your condolences and memories you've shared. I'm sure her family would love to see them so I"m trying to figure out a way to share them with her children or husband.
Longest day in a long time in chemo yesterday for me. 2 hours getting a magnesium drip, 2 hours getting a blood transfusion, 15 minutes getting a lasik infusion, some dex and then another half hour getting my Gemcitabine. Boy was my bum sore and lower back stiff. I got the "loser" chair. The one they pull out and squeeze in when they're overbooked and need more room to accommodate a last call patient. No electronic settings, no TV, no back cushion and no view other than another 25 patients lined up on various drips. Then to get home and find out my breathing and stamina are even worse! But being the eternal optimist I decided to wait before complaining and sure enough ater my morning meds I started to feel better. Nothing like a little optimism and patience to start the day !Time to get rolling ladies. Not sure who'll be here today. I wouldn't blame anyone for enjoying some beautiful weather over chatting here today, so hope everyone is maximizing on the joy some sunshine brings.
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Hi. I just pulled myself out of a doom and gloom mood. Now in positive mode awaiting my Dr's appointment next week!! Very much enjoying the gorgeous weather. Getting a head start on backyard chores...draining the yucky winter weather from the pool cover!!0
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Good Moring @Fearless_Moderator. So sorry to hear of all the issues your having to deal with. I send strong hugs your way. Just in the mist of eating and getting dressed i have a gp apointment this morning. Had my ct yesterday. Spoke to my oncologist nurse on tues about all the things happening with me. They got me in to do hydration a day before mt ct and another yesterday after my ct. They rechecked my blood before stsrting the hydration 2 days ago my creatine has come down a bit to 102 and my gfr up a bit to 54. So hopefully it will keep going up.
Then on top of all this i got a letter from my gp saying as of yesterday he is no longer with the medical office i go to and that for emergency bases they refer any to their walk in clinic for now. And that he is working to set up hus own practice and will let us know in another email soon. I spoke to that walk in clinic and yes they can access my files from upstairs. So that's good. Just got to get my acid reflux under control and other symptoms I'm getting from low kidney function now.0 -
What a beautiful day!!! Lots on the agenda today. I am taking great advantage of a two week break from Chemo (the flip side of the coin is I had my CT Monday and I will find out tomorrow what's what!) I went to check out my results but now you can't just pay the $5 at regional hospitals for a one time look, you now have to take an annual subscription for about $50! On principle I won't do it. That's a lot of money for people (you must also have a credit card) and IMHO it doesn't make for universal access. (rant over). LOL!! Whatever the results there are only so many options and we will discuss them. I have run plans A-D through my head.
My husband is going for his physio and I am going to the cancer to center to be in a fundraising video for the hospital. We have been involved for many years and apparently they are going to "fake" putting an IV in me! I wish they had faked during the CT. I have a bruise to end all bruises. Lovely woman but didn't listen about my veins rolling. So second site was successful. I am then going to meet a couple of friends for a glass of wine and my daughter has invited us to dinner. I am going WILD I say!!
On another note, I have been inquiring to OCC about the Elahere drug that got accelerated approval in the US but not here. I was declined for the trial here (Mirasol) but the results I understand were quite good. The OCC did meet with the drug company rep and she was going to get a status report about (if or when) they would come to Canada. Our market is just so much smaller and of course the first step after they decide to come is Health Canada for approvals. The OCC is great with follow up I must say!
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@GloHo so glad to hear you pulled yourself out of a funk. It''s so easy to get in one, but seems so hard to get out of it sometimes, I just try to focus on something good in my life that moment and bang......the bad disappears and gets replaced with more positive thoughts. I find the ability to control that very empowering.
@Eileen, always something to contend with. I never think about the possibility of my doctor moving and what that would mean...at least I didn't until it happened about three years ago. For me, it worked out just great. Love the replacement and rely on her 100% for sound and logical advice. So things do work out in the end.
Do watch your kidney numbers like a hawk. As long as your creatinine level is trending down and your GFR trending up you're doing all the right stuff. Hydration is the key but to be honest sometimes you can be over-hydrated which can cause it's own set of issues. Take to your oncologist, if you haven't already, about what amount of fluid should be considered reasonable for your condition and remember, all fluid you intake counts, not just water even though it's probably the best for you and the most easily tracked.0 -
Ty, Yes ive talked to my oncologist about my water intake. I told them i drink about 4 500 ml bottle water a day. Since having cancer this is all i drink now. My oncologist said that is the prefect amount. She joked and said any more than that and i'll float away.
Ok headed off to my dr apointment hopefully this new dr will maybe give me some answers. have a great day everyone. Cloudy here today.
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@Taita you sound pretty chipper today. Amazing what this sunshine and warmth brings out in all of us.
Thanks for the update on Elahere. The approval process to market drugs is so different in the US where it's not tied to FDA but to insurance coverage. So since the FDA has no financial impact to themselves, they approve far more rapidly than we do. We're the opposite. Any approved drug has a financial impact to the province to getting that approval can be onerous at best. The manufacturer of Elahere still hasn't applied to have their drug available in Canada so it's a waiting game, the onus on them to initiate. Frustrating for us Canadians knowing it's not just drug safety and effectiveness but comes down to the almighty $ and cents considerations. I could wax philosophic on this issue for hours so I'll stop now.
I'll bet your video turned out just great. When it starts appearing, let us know. I'd love to see it.1 -
Question for anyone online or who reviews todays chat. Has anyone noticed the Ovarian Cancer Canada website pages have changed? What do you think of the new look and functionality? We will be going through a similar update soon,,,to align our look and feel to that of our sponsor. Fortunately we'll have some opportunity to influence so I'll let yu know what I see when they reach out with the new site dummy to review.0
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@Strongwoman to answer your question from last week, I would say my hernia is inoperable at this point because I am still on Avastin. We will see what happens after my appointment tomorrow. On another good note, my GP got me in to see and Opthalmologist tomorrow and hopefully I will get my cataracts dealt with soon and be able to drive again. It has taken away so much of my independence when you live in a small town with no transportation.
@Eileen Good luck with your appointments.
@GloHo I know what you mean. I was in a funk when my Dr. pulled my last treatment (long weekend, clinic was shut for four days) I really felt like it was some writing on the wall and with the passing of @ToughAsTeal
who was diagnosed the same year as I, the funk clouds came rolling in. It takes time to process and we have to be kind to ourselves on one hand and tough on the other. Too much of life still to live. So glad the clouds have lifted for you,
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@Taita good luck with the cataracts. I feel for you on the independence issue. My mobility range issue in my right hip has precluded my ability to drive my car for almost six months now...or drive any vehicle. I can't move my foot from gas to brake and visa versa so doing a quick run for a quart of milk or meeting a friend somewhere for a girls lunch is out of the picture for me. Like you....small towns/no alternative transportation. Slowly the hip has been healing....LOL just in time to find out my car needs $2500 in repairs of course.0
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Well ladies, time to fluff up my tutu and go out and enjoy this spectacular weather as well as a "no side effects" from yesterday day. See ya'll next week.
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