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!
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
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IT'S AUGUST AND YOUR WELL INTENTIONED HOST IS TAKING A BREAK FROM HER DUTIES THIS MONTH. HOWEVER, DO CONNECT WITH ANY PEERS WHO MAY HAVE ALSO SIGNED IN EACH THURSDAY AND INITIATE A CHAT WITH THEM.
I'LL BE BACK IN SEPTEMBER WHEN WE WILL RESUME OUR NORMALLY SCHEDULED HOSTED CHATS, EVERY THURSDAY AT 1PM ET.
Stay well and happy........
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Hi everyone I know that everyone taking a month break but i had my Ct scan last week. Still did the iv contrast.
Had meeting with my Dr. Ct shows shrinkage and stable lymph nodes. Yea great on that point but my CA125 really doubled this time 127 and on a full caeylx reg. So i voiced my concern that hey i don't want to restart getting more tumors or it growing again
But for now I'll take the win.
The oncologist i been seeing isn't my reg oncologist, but part of her team. So she will discuss my concerns and the raise in CA125 levels with my oncologist. On other note their is a suspected blood clot in my lower left side that she will hav a hemotologist look at scans worse case senerio i go back on my blood thinners. She said meds could cause this so not a surprise. Mmm wonder that's why ive been getting pain their. Thought it was from my tumors.
@Taita wonderful pics glad you had a wonderful safe trip
@Fearless - Vol Mod i am ao happy for your good news
@ToughAsTeal great wonderful news im so happy for you!
@Tinazzie im sending lots of prayers and well wishes your way.0 -
Last weekend was my only child wedding,I am attaching a few pictures. All the best to everyone in treatment and great summer totally.3
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A great summer to everyone.0
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@Rad absolutely beautiful- all the pictures! Your dress is so pretty!0
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@ToughAsTeal and @Eileen thank you.0
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@Tinazzie and @Fearless - Vol Mod thanks for the good wishes.0
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IT'S THE FIRST OF SEPTEMBER AND WE'RE BACK AFTER A SHORT HIATUS. SO WELCOME TO WHOMEVER IS ONLINE TODAY AND HOPING TO SHARE WITH OTHERS IN OUR COMMUNITY.
Today is bright with clear blue skies and a nice cool breeze in the air where I am. And so thankful for some healthy rain finally over the past few days. I was starting to see signs of heading into a drought. The rain has cut into the humidity and now we have that wonderful fresh smell that comes after a rainstorm. And I'm so excited that my contractor is just about finished my huge new deck off the south and wrapping around the west sides of the house. Railings go in today and tomorrow and we're done.
How have you all been? As the month of August began many of you were either in treatment, awaiting recommendations on new treatment plans or waiting on status reports from new scans. I do hope news on all fronts was very positive. I'm still on the Avastin /Caelyx track for now. Last scan showed a wee bit of progression but nothing to be concerned about yet. Everything is stil in the millimetre category.and not causing any discomfort.Well you wonderful gals, it's going on 1PM. I'm here and hoping there will be at least a few of you to chat with today. For anyone newly joining us, in order to participate you must sign in and then click on this discussion thread in order to post comments or questions. So, whomever is there, please say hello and let us know what's new with you.
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Hello!
I just woke up from a nap. Was not able to get one in the past couple of days and have been dragging as a result.
Went to the market with my son this morning and am enjoying the peacefulness of the house right now.
I did update on a different thread but for those that didn't see it. I am LGSC diagnosed last year, underwent debulking and chemo, was declared NED in Sept 2021 and in June of this year recurred. I have been informed that with palliative care that they give me less than 2 years. I had to make the decision to stop working which I did at the end of July. My oldest son moved home to be with us and I have been busy as he says playing real life "Animal Crossings" since.
I had a garage sale with my elderly Aunt last week and donated the rest of the stuff on Monday. I took some of my work stuff to a local auctioneer and it will be auctioned off next month.
I am currently on Letrozole and now working with a new Med Onc and am waiting the process to get Trametinib to me to take in conjunction with the Letrozole. I go for a routine CT scan next week and my latest CA 125 level has shown it is still rising.
I work with a Palliative Team now and love it for the fact that they try to keep you out of hospital and are there 24/7 should I run into trouble. I ran into some trouble last week and did not have a SRK on hand at home so it was rough. I now have that should I run into that again. I imagine I will as we believe it was another partial bowel obstruction due to the disease.
On a happier note, hubby and I are off to do a day trip to Collingwood on Saturday.1 -
Happy September everyone! August was a bit of a rough ride but hoping our new plan will work! Three weeks on and one off (Still on Taxol and Avastin). Neutrophils were .2 and not rising with a break so now the day after my 3rd treatment I have a Shot of Lapelga at $1500 per dose. Sent my neutrophils up to 33! 🤞. Feeling much better!0
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That is good you are feeling better. Did you have any side effects from the Lapelga? I believe they start 3-5 days after the shot if I remember correctly.
Wounds like you are a good road now and have a good outlook on it.0 -
@Strongwoman welcome. If I recall correctly this is the first time you've been able to join our weekly online chat. I did read your other update so I can see lots of positive activity over the past month. The addition of the connection to the Palliative team is such a bonus to you. We should all have specialist assigned to do nothing but make our lives easier as we go through this journey. Definitely wish you every success with getting your treatment plan all in order and that it all works as expected. But in the meantime thank you for doing such a great job responding to our members' comments over the past month. Your perspective on the disease and sharing our own experiences has been very encouraging and enlightening to so many.1
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@Strongwoman I had a bit of discomfort in my legs and hips the next day, took Tylenol and all good. Legs feel a bit wooden some days. I also had an updated scan a few weeks ago. I am holding and a bit of a decrease. However I have a lymph node that isn’t responding so we will see and possibly consider some radiation. The biggest challenge right now are my eyes from the clinical trial. I need increased lenses every 6-8 weeks! Went from -250 to -750. Hit new lenses again yesterday so I am getting used to them. Never a dull moment!!@Fearless_Moderator always says….We are our own statistic and we can prove their “statistics” wrong! 💕0
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@Taita, so glad to see you here on my first day back. I"ve missed you. And so glad you have the new plan. Give it time. I understand those of us on Avastin + a chemo respond slower than we've come to expect with other treatment plans. For me it was almost three months of minimal change, although to the positive and then 'wham' a big dip in my CA which was so encouraging. Are you actually paying for the Lapelga. When I was on platinum based chemo early last year every cycle ended with a shot to keep my immunity up. But it was all covered under the provincial guidelines. Then again , they keep changing the 'rules'. Fortunately under my current treatment plan my blood work has been exceptionally good so no need for Lapelga shots yet...
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Yes @Fearless_Moderator this is the first time I have been able to join the chat. I was either working before I had appts that interfered with the time it ran at.
Thank you and I, too hope this works as I don't believe there are any other options out there for me should it not. So, I don't let my head think that way for now.
I, too agree that we all should have the same care from diagnosis. Meaning a 24/7 team that is there for us as we go through our treatments etc. I, personally, don't mind the hospital but don't want to go unless I have to. First, if it can be managed in another way it saves the health care system money, is easier on the staff at the hospital and saves the person who is the patient a lot of uneccesary dialogue of our conditions when we are usually feeling like crap.
As for helping out on the site, I love doing it. It is my belief that if this is part of the reason I was put on this earth then so be it. If I can help anyone out there, I will and as far as my own unique dance with the disease, I feel the same. If they can use any of this to help future LGSC that acts like mine is, then that is what is meant to be!
I was hoping @Sylviequebecbc might be on so I could see how she was making out with the Trametinib I am to be going on.1 -
@Strongwoman how lovely, a day trip to Collingwood on Saturday. It's lovely up there this time of year. Enjoy. @Taita, any plans for the long weekend? I actually forgot it was this weekend but my husband works at one of our wineries out here so he's not free on the weekends. But it's been a bonus for us this season as he cut himself back to working only 4 days, so we have 3 a week to enjoy together.1
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@Taita that would be tough....the eye thing. I just think about all those things it can affect on a day to day basis. It is something you would notice when It starts to decline for sure!0
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@Fearless_Moderator good to be back. Yes I was able to be reimbursed for the shot and now it will go through Trillium. If it works you will see me dancing in the streets!! It appears that the Taxol is removing my nails now and hopefully won’t be too painful. In the scheme of things minor detail. It is part of the ebb and flow as they say!0
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@Fearless_Moderator @Taita
I am currently having one of those days that I don't "feel" like responding to anyone texting today. I will respond to hubby and the boys if I need to but almost feel like I need a break from the rest of them. All good intentions but don't feel up to engaging much today.
The other good thing I have going for me for now....the oldest son takes my car to work so no one usually knows I am home so they don't just "drop in". I find some are great at knowing that an hour visit is great and recognize my need to rest and others aren't so good at it.1 -
@Strongwoman send @Sylviequebecbc a personal message. I'm sure she'll be delighted to share her experience wit the drug. IF I recall it's just new to her though so there may not be anything to share about it's efficacy but by now she's likely had any side effects and could be informative on that front.0
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@Strongwoman
Don't' ever feel obliged to engage on this site or constantly be available to the "drop ins" who I'm sure are well meaning. All of us need a break from having OVC in our headspace constantly. That;s why I took a hiatus from the weekly chat for August. I just needed to take back that time for ME. As for drop ins, LOL, my friends and neighbors learned a long time ago never to surprise me with a visit.....call first. What I did have to learn though was how to politely say....not today.1 -
Thank you @Fearless_Moderator I do love going up there especially this time of year. I did let him know that before the "Luminato" light show is finished for the season up there that we are going up to stay for a night and seeing that as it is on my bucket list. As is a hot air balloon ride but I am finding it difficult to find someone to go up with me.1
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Hi everyone. Good to be reading everyone’s updates. It’s about as close to a gals weekend at the cottage as I can get! Glass of wine in hand, even if it’s apple juice. Have had some difficulty past few weeks. Did end up in hospital for a few days with fever that we don’t know why. Have had a tx since without fever. My challenges remain with constipation and I am in a tremendous amount of pain and basically telling the cancer where to go.My team knows. Following their direction at this point. ….. I mnanaged a day trip to Sauble to in-laws cottage. Was all I could manage exhausted from drive up and back but happy I did. Will not be well enough to do CNE with husband and kids this weekend. My cousin will be checking in on me. My brother will be in town for a few days from Vermont. Looking forward to time with him.1
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@Fearless_Moderator
Ugghhh!!! That is the tough part....."not today". I will get better at it. They all mean well but sometimes I just enjoy the down time.
Yes, I know I don't have to respond but usually I am up to it. If I am not, I just don't and will partake later.
I have found one of the other things I am great at is this: pretending I am not the patient when I am in dialogue with my doctors. I can talk like it is a "case" we are discussing and that the "case" is not me. It is when they are there in person and pause, look at me directly and wait that I crumble. It gets me every single time!0 -
@Fearless_Moderator
Before I forget to say it.....your deck you are having built sounds Ah-mazing! Bet it will be nice to be on whether it is this weather or the fall weather with a blanket and a nice hot drink too!
@ToughAsTeal
You are a trooper! Sounds like you have had some rough days. How is your pain being managed? My team just switched me to a long lasting, slow release pain med which has been much more effective than taking the short acting ones. Until they told me about the long lasting one, I had no idea they existed. I find the "work" to avoid the constipation exhausting. I take Resoralax which keeps the water in the bowel and then take Senokot which moves it through the bowel. It is up to me to manage what that looks like based on my stool. It is awful when you are constipated though and so uncomfortable.1
