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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@Strongwoman Wow! Sounds like the kind of intelligent, informed and well considered input we all dream of getting at our oncology appointments. So glad you got it at such a critical period in your treatment.0
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@Strongwoman such great news despite your ineligibility for the trial. It sounds like that team not only knows what they are doing, but also care about their patients. Sounds like things are moving in a good direction, I was very pleased to read your message : )
I'm glad they brought up the possibility of another surgery just to see if perhaps there is an explanation as to why you have been suffering with ileus's/obstructions. You are right, it's safer to have the surgery when it's not an emergency.
If I remember correctly , you had a mutation but had a bad response to the targeted treatment? Perhaps when they review the tumor testing results they will come up with possible other treatment options. Was the reaction severe? At the time did you try a dose reduction?
You are right about the weekly Carboplatin, the dose will be reduced. I think the side effects might be more severe when it's given weekly instead of every 3 weeks but that was what I've read about taxol.
Good luck on Wednesday at your appointment!!0 -
@Strongwoman
What a positive report. Clinical trials are finicky so while you don’t qualify, they gave you some good news. I was back at PMH in November for another consultation on last options (I did and 8 month Clinical Trial there in 2021/22) and they continue to be some of the most caring, thoughtful people I have met on this journey. Good luck to you. Options are always a good thing!!0 -
@Strongwoman in spite of not being eligible for the trial it sounds like a lot of positive feedback and options have been given! The team sounds very caring, something we all hope for when tackling this disease.0
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Thank you @GloHo @jmbarrhaven @melissa @Taita @JoanEG
It has been a long day with a lot of info. I had a little cat nap and am reading a bit before I go into my sleep for the night. Thank you all for the support and kind words encouraging me along this journey. I will update anything I find out along the way.
Knowing this Med Onc had terrible reviews before going in, I had no expectations at all. I did my best to keep an open mind and see where the conversation went. I will say although he is a researcher, he is compassionate person and truly wants to help find a way to help us in finding solutions to living with this disease. I would like to say eradicate it but think that is a far stretch for any researcher out there to say. To know they truly care and want to help is all I need to have faith and trust. One of them will have a break through at some point in time and it will be a relief for women world wide. This disease is silent in many ways and we often find out way too late because of it. They will keep coming up with possible solutions and vetting them out and one day.....one day....they will succeed. Oh what a happy day that will be!
Now rest all your weary heads as I will rest mine. Tomorrow is a brand new day for us all.
💕🤗💕5 -
Hello everybody. Been listening to you all, and wishing you all well in the various places you be at. What a lot of options and decisions we all have to make all the time. But at least we have them.I am Day 13 post chemo. My last chemo I am so thankful to say. For this time around anyway. I spoke to mumble-lips yesterday on the phone, and he agreed that I needed a break, but is putting me on a hormone pill for maintenance therapy. I just hope it doesn’t make me as ill as the letrozole did last year. Anyway, I am not going to start it yet ( my decision) as I want my body to have a chance to repair itself without more chemicals to contend with. This is an intuitive decision and not based on empirical evidence. Oh, bad me!My CT scan was really good. No detectable lumps and bumps anywhere. Numbers are steadily declining and close to normal. The red devil did its work.But with this last chemo came a bladder flare, which has been painful and difficult. My NP wants me to have Botox injections, but it requires her to send in a new referral to the urologist that I am already a patient of, because it is a new issue. This seems really cruel. Yet another wait for service, when I am already on his list! I so wish that I could change to a different one. But this is not cancer related, I have had bladder issues for years and years. I wish they would just remove it. I would be happy as a clam with a baggie at my side and no more pain. But apparently it is quite complicated. But it really drags down my quality of life. I am hoping this flare will die down as the chemo leaves my body. I bought myself a long black hooded puffer coat the day of chemo, and although we have had below freezing temps here in BC, even on our little island, I have not had a chance to test its warmth ability. Everything is warming up and now we have snow forecast, four inches here. Of course ,all you people east of the Rockies are laughing at us, but really, its scary when you don’t know how to deal with it, esp. on the roads. And so slippery and easy to fall in. But pretty, I have to admit, very pretty.I agreewithyou, @Strongwoman, won’t that be a great day when they find a diagnostic tool or sign that enables women to know they have the very beginnings of this disease and it can be eradicated. Like Erythromycin for TB, and Insulin, lets never forget that miracle. They do happen, miracles, and I will continue to pray that we will get one for OC…..2
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@Strongwoman
Thinking of you today as you meet with your Onc this afternoon to discuss your options and potential surgery. Sending positive vibes. 🤞🤞🤞1 -
@Hooodith That is all wonderful news for yourself....not the bladder issues.....but everything...taking a break is something I feel that both yourself and your body has been needing for a bit now. Take the time you need. I sincerely hope they come up with something for your bladder and find some sort of resolution for you to become less painful. Pain can get the best of us down and wears on our entire being. Keep us posted on that front please.
Yes, another cold and windy day here that is causing some drifting across some road ways. Another reason to stay bundled up inside.
Take care of you and enjoy that much needed break of yours!
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@GloHo Thank you! I had my meeting and it was quick and painless....just how I like it. My Oncologist is making the referral to Juravinski re: surgery for blockages. We discussed what that may look like and she mentioned that it may be laproscopic and if needed then possible opening. That is her guess not a firm. That is for Juravinski to decide. She said that she is hoping with me in front of them to see not only from my work ups but myself in person that I am a healthy specimen to be able to be worked on. Meaning that I am healthy to be able to withstand the surgery. It would more than likely be at least 2 surgeons (Gyn Onc and General) with possibility of another if needed. We are hoping I get in to see them before a month is up so that we have more answers regarding that. More than likely changing my maintenance drug from Letrozole to Tamoxifen when I have been on this diet for a month and things have calmed down. I suspect we try this first before resorting to weekly Taxol and perhaps avoiding it all together. We will see. All in all, positive and moving forward. That is all I want. Move it forward and lets get some answers.
I am being cautious with this new eating as I am completely terrified of having a flare up and possibility of a NG tube again. If that is what will keep me on the straight and narrow, then so be it! Cheating is not worth it in my opinion not when the consequences are so awful. Today I had a piece of lemon loaf that was moist and delicious at group today. So, yummy! I thoroughly enjoyed it. I am still hungry now so off to find a safe snack or possibly a protein shake to resolve that!
I will chat with you all tomorrow. I am hoping my son will drive tomorrow so I can still be part of Teal Thursday as he booked his follow up appt smack dab in the middle of our chat. Oh well, if I don't respond right away tomorrow, we are in with the physician getting some answers, please carry on without me and I will catch up when I can. Who knows, the physician could run behind and all will be good. Stay tuned.....:)2 -
Great update =- can you share what you know about avoiding bowel obstructions and what the low-residue diet is? I have lost two friends to bowel obstructions during cancer treatment. They were both gone within days of being told the obstructions were inoperable. I would love to know if we can prevent them.
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Hi @BellaDonna1959 all of it is in previous threads. If you aren't prone to them, you have no worries. Type "bowel obstruction" "ileus" in search bar. It will pull up previous threads.
The diet I was given is in a previous thread as well with @sandi6 which is under come and introduce yourself heading.
I, personally, have had 4 since Nov which is too many. This low residue diet should keep things calmed down which is what I am going for. They really are unpleasant to go through.
Hope that helps.
Take care2 -
Hello @BellaDonna1959- I believe another name for this low-residue diet is a low fibre diet. I had my first small bowel obstruction episode a few weeks ago and was recommended to go on this diet. There is lots of information about this diet on the internet.
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@BellaDonna1959 To hopefully help ease your mind as well, there is a difference in bowel obstructions in a couple of different ways. One is location and the other is severity (partial or full). It sounds like the loved ones you are speaking of may have had sudden or acute and full obstructions which lead to death. Partial obstructions can usually be treated and a resolution or remedy of the situation is obtained. The problem with partials is that they can recur and can lead to worsening episodes of them. That's where I am at. I also had 2 blockages (so to speak) which made them not easy to treat. It's why I required the NG tube this time. If they were unsuccessful with this, surgery was being considered but comes with a lot of risks for me in particular. Mine are usually small bowel obstructions often called ileus.
If you have concerns, I would urge you to speak to your team and discuss them and/or the possibility of these occurring for you. It may help to ease your mind. Hope this helps and clarifies some of the information.2 -
@JoanEG That sounds like positive news. How are you feeling about it all?0
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That is awesome. Good to hear @JoanEG
So glad it was a good visit and news1 -
Oh poop 🤣🤣🤣
For those of you watching the bowel obstruction threads as I am. I have not experienced an obstruction and am trying to be very careful to ensure it doesn’t happen. My Onc is adamant that I keep a very close eye on my bowel movements!!Hubby and I went out for dinner to celebrate our 47th wedding anniversary on Monday and I ate more cheese than I should have. Cheese is my constipation trigger. So I took a Senokot Monday night to try to get it going and not wait. The Senokot did not work yesterday (unusual for me), so I took another one last night. All’s good today.When I was in for my chemo infusion today, I mentioned it to my Chemo Onc and she said that if I became concerned about not having a BM, that I should start a “fluid diet” until I got back on track (or if it gets worse = hospital). I just thought this was timely given the recent conversations going on here. I’m not sure why some of us get obstructions vs constipation. Obstructions really seem to be quite prevalent with this disease.I now know which meds and foods cause problems for me and I start my Senokot either the evening before or the same day as the trigger to try to offset the constipation. It seems to work well for me. I was considering starting the low fibre diet, but because I do not have chronic constipation and I have been able to manage it, I don’t think I need to go that route right now.One of my tumours is very close to my bowel so I expect that it may, at some point, start to press against the bowel. I will speak to my Onc about potential scenarios and options at my next visit. My next scan in late Feb will give an indication of how concerned I should be at this point.I appreciate all of the candid discussions about this issue. It has helped reinforce the care I take to keep things in check. It also highlights the seriousness of this issue.We all need to do what is right for us. Without these discussions, a lot of us wouldn’t have a clue…I know I wouldn’t!!1 -
@Strongwoman
So glad to hear appt was positive and things moving forward. You deserve that piece of lemon cake!!0 -
And with a little patience......and memory returning to me.....I found the Doc I was looking for.....of course it was under Google Docs!!!! Silly me!! Thanks for all that helped me with this all your suggestions were great!2
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Welcome all to this Teal Thursday on Jan 18th, 2024. We have had a lot of discussions as of late and where everyone is at and where some are headed. I have been grateful for all the participation in the discussions and the compassion from all. The suggestions and helpful hints to assist another Teal Sister have been wonderful and I can feel the support from all of you to myself and others. I hope you are all feeling it as well. This is our community and safe space and am glad you feel that it is too.
In case some of you are starting to journal or perhaps don't know where to start, I thought I would post some ideas to get you going.
To Begin Writing
Things that make you happy
A memory
Places you want to visit
Favourite movie
Favourite book
The power of music and what it means to you
Your best friend
Favourite TV series
Describe your style in clothes, decorating
Someone you miss
Your celebrity crush
Write about your day, today
Your elementary school
High school
Someone that inspires you
Someone that empowers you
What you are afraid of
How do you like to relax
What habit do you wish you could break?
What piece of advice would you give your former self?
If money was no object, what would you do?
What did you want to be when you were your younger self?
What are you most proud of?
What was your career and how did that begin for you?
What is one thing you would like to change in your life or your life path?
That should get you going. Some journal prompts or some to think of to get you going.
Where are you all at today and what would you like to discuss.
I am here for whenever you are ready.....to begin.....
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Good morning (here in BC) @Strongwoman and everyone. It’s snowing hard here in the Cowichan Valley. I usually do a thorough house clean on Thursdays but so far all I have managed is to put fresh sheets on my bed, scrub my bathroom and do some laundry. I’m just feeling blah today. @Strongwoman I was glad to see you had recovered your writing and thank you for passing along some suggestions on getting started on journaling.0
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Hi @Strongwoman - thank you for this message. Lots to think… in good way.Further to some earlier discussions regarding bowel obstructions, I hope you don’t mind me asking about what you think triggered your episodes? Specifically, I am curious to know if you suspect some certain foods that you had and led to your bowel obstruction?0
