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).
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)
Comments
-
@Strongwoman Your team costumes are so fun. The positive energy and love shines in these pictures. Great to see,
Congratulations on your prize !
0 -
Hi all. Re: @flory post re Signatera.
I think the difference between genetic testing and the Signatera test is that Signatera can gauge the amount of cancer, if any, in your body as well as uncover your recurrence risk. Genetics testing is good to find out if you have any mutations that are being studied and can receive targeted therapy.1 -
So sorry to hear you had another episode and are dealing with that right now.
Your team looked amazing - love the unicorn theme.
Congratulations on winning top individual and team fundraising and Team Spirit, I’m sure, was hands down win - it sure shines through in your pics! Way to go Divas!@Hooodith
A vaccine would be amazing. Can’t wait to see the results from the studies - better yet, would be awesome if/when something like this is available!Genetic testing
It looks like BioDiva is still recruiting - there are several locations throughout Ontario. My centre (London) also had a genetics testing study (POWER). Not as extensive as BioDiva and it was only available for patients at that site and not advertised anywhere. If you are a patient in London, you could ask about that one too. Maybe other centres are also conducting their own research in this area? I did both studies…no genetic markers or mutations out of the norm for OC, so no targeted therapy for me.0 -
@Strongwoman I’m sorry to hear you are dealing with another episode and hope you recover quickly. Thank you for sharing the pictures you all look amazing. I can feel the love and support radiating from those faces.
1 -
@Strongwoman I wish I could give you a hug too. Beautiful pictures that made me cry. You are a very special person, who is helping so many of us. I wish I could help you back.
1 -
Why does everything feel so much more ominous when the Dr talks to you about results??!!
She is, of course, concerned about the pleural effusion. However, since it is small-ish, it is not yet affecting me, and since I am feeling ok, she is not recommending a biopsy at this time - but I can expect one in the future.
I am going to continue with the trial this cycle. We are waiting on the CA125 results to determine if I will continue into the next cycle. If the CA125 has increased significantly, then she will probably recommend discontinuation in the trial. So, now I wait, with trepidation, on the CA125 results! I am at the hospital all day and overnight tomorrow, so hoping my results come in while I am there so I can have “that” discussion with her. The fact that there was no shrinkage but some minor progression is also part of this whole thing.
She did mention that if I am discontinued from this trial, I would be referred to the gynaecological unit to explore next steps (i.e., trials). (BIG SIGH!)
When I began my last immunotherapy treatment, I did a lot of research and came across “pseudoprogression.” This is when initial tumour size increases and new lesions appear followed by a decrease in tumour burden. The article warns that often times treatment is discontinued before it is determined if you are experiencing pseudoproression or real progression. Hmmm…need to talk to Dr about this…see what she says.
Can anyone provide info on pleural effusions?1 -
@GloHo I have also read about pseudo progression while on immunotherapy. That it happened early during treatment within 12 weeks of starting, as well, that the pseudo progression can, and often causes elevated ca125. So… knowing all this why do they remove people from trials early. If you feel ok then maybe the argument of pseudo progression is a good point to bring up.
About the pleural effusion, I haven't had one, but I remember you saying that it has been found on scans I. The past so not knew, and potentially an argument to say that it might Infact be pseudo progression.
In terms of info about pleural effusions all I can say is that they can cause one to have a nagging cough, chest pain/discomfort. Depending on severity can lead to shortness of breath/difficulty breathing and impaired oxygen levels in the blood. But you don't have symptoms from it
0 -
@melissa
Thanks so much for helping me think through this. I really appreciate it. It is such a gray and confusing place to be.
To make matters even more confusing, I received my CA125 results indicating a DECREASE (yay!). Not a lot (200) considering how high my count is, but I’ll take the decrease!!
So now my CA125 does not align with the scan. 🤣🤣 Not sure what that means re pseudo progression. I am going to ask to speak to the Dr today or tomorrow before they discharge me to discuss this latest development.
Thanks also for the heads-up re pleural effusions symptoms.0 -
Hello Everyone. Here it is still quite humid out and I am hiding out inside from it. How is the weather where you are at today?
There has been continued activity with great questions on the site this past week. @GloHo is searching for answers about pleural effusion and what others have felt/gone through with their own. Please reach out if you have anything to share with her.
There has been activity on Low Residue Diet, scanxiety, results, trials, advocating for oneself. Lots of good info. What would you like to share or add this week?
Please forgive me if I don't reply right away, I will catch up. I am a tad fatigued and may fall asleep before our session is done. I will respond when I do wake up if I happen to fall asleep. I am still recovering from earlier this week and had my first "outing" this morning which is a milestone as we all know. So let the conversation flow and carry on, my friends…..
2 -
Hello ladies
Today in my neck of the woods it's cloudy and drizzling a tiny bit. Perfect excuse to do nothing lol. Went out for a quick breakfast with a friend and am now on the couch watching tv while a sink full of dishes is calling me. They can wait : )
I feel like watching my comfort shows and just relaxing. Still reeling with some anxiety after having my scan on Monday. I feel like I'm doomed to play the game again with myself... Everyday the phone doesn't ring is a good sign. I ll probably start my calls/emails to the dr if I don't hear from them by 2 weeks.
I knew from day one I would need to talk to a professional eventually and I think the time has come. My anxiety manifests into physical symptoms and then my mind goes wild with the what if it's cancer...... I did the same thing a few weeks before my last scan and it happened again. In January I thought I was having lung issues, muscle/nerve pain etc etc I was convinced the cancer went to my lungs. Same thing this time. I recognize this thinking, while can't be helped to certain degree, is not healthy.
I try to distract myself and that does work to a degree. So...
@GloHo I really hope your team hears you out about the possibility with pseudo progression. If your labs are good and you don't feel worse then If that's what you want they should allow for the next cycle.
I understand why criteria for trials is structured the way it is but... Geez it's a bit much with the inclusion/exclusions
That's my rant
0 -
Good afternoon sisters. It’s a beautiful day here on Vancouver Island. I had a busy morning. Cleaned my house, went for blood test, popped in to my office for an hour then went grocery shopping. Like @melissa I am now on the couch! Sorry to hear you are experiencing so much anxiety @melissa I hate that we tend to think every ache or pain means cancer progression! I have had a sore back for the past week and pretty much have myself convinced the cancer has spread to my kidneys. The reality is probably muscular but…..
@Strongwoman I hope you are enjoying a nice nap!
0 -
@melissa I am just like you, and have been all my adult life. And I am a psych nurse and even teach cognitive behavioural therapy, containment, and the STOP technique. Its that old adage, “Physician, heal thyself”. I find that sharing my fears with my husband often helps as he is so calming and sensible. I think catastrophizing is normal when you have such an unpredictable disease. I have found keeping a catastrophe diary has helped. I write down every fear, the symptoms, the date, and the outcome, which is usually something benign, like a hemorrhoid, or a pimple. Then when it happens again, I go read it and remind myself that it was nothing then, and is probably nothing again. I also remind myself to see the doctor if I cannot reassure myself and the anxiety is taking over.
0 -
@Hooodith you are a genius. The other day I thought about what you just said in regards to keeping a symptom journal. Brilliant. Of course I have not done it but will as of right now. I tell myself the symptoms now are basically the same as before my last scan, but my mind doesn't allow me to be logical to often. Thanks for sharing how you deal with anxiety xo
0 -
Oh but you do and everyone does by sharing their stories and communicating. It fills my heart when I see all the activity on the site. Love to see the ideas and sharing of journeys or tricks/tips amongst the ladies. So keep doing what you are doing. 💕
0 -
Good for you @melissa to recognize you need some help and following through with seeking it. It takes a brave person to do that. Good going!!!
I ended up napping 2 hours yesterday so I must have needed it. Today I don't feel as sleepy…..yet. I may still sneak a nap in there somewhere. So far I have laundry started and cleaned 2 bathrooms. Tidied up my office just a little not like really cleaned it and am catching up on emails etc now.
Today looks cooler and overcast but I will take it if it means cooler sleep at night too. Tomorrow we go see our friends' baby who will be almost 2 wks old when we go. I can't wait to meet the little guy.
0 -
@melissa
Sorry to hear your scanxiety takes you to the next level but so glad you recognize that you need a little extra TLC ❤️. Hoping the journaling will help, let us know how that goes for you.@Hooodith
Thank you for sharing your catastrophe diary idea - I think journaling is a great tool to help us work through whatever we are going through.@JoanEG
Look at you go! It sounds like you are back to normal with a little added TLC to your daily routine.@Strongwoman
So glad to hear you are up and about and getting back to a normal routine. A nap sounds like a great idea on this dreary, grey day 😴 .0 -
Hi ladies,
I hope everyone's day is going well. @Strongwoman I'm glad you got a good nap in yesterday, naps are good! Today the rain came down hard for a bit then the sun came out, but now it's dark and gloomy again.
I am feeling much better today compared to yesterday. I came out and am sitting at a resto my brother works at having a nice cappucino watching him work lol
1 -
@melissa Just an ironic story on the subject of catastrophizing. My older sister and her husband are retired doctors. He has been coughing up blood. They were both, as ex-smokers, convinced he had lung cancer. Yesterday he had a bronchoscopy. Its chronic bronchitis. Two. Retired.Doctors.
We are not alone…1 -
@Hooodith oh my... I can just imagine. I would have thought the exact same thing. In fact, the coughing up blood would have been the smoking gun to confirm it lol. Both retired doctors too. Well, thank you for sharing this. It's nice to know we are all human. The healthcare professional in us might make it worse at times. Sigh. Glad it wasn't cancer xo
1 -
Sending this poem of encouragement to all my lovely sisters!
3 -
Beautiful poem @JoanEG
Thank you for sharing. 💕
1 -
Hi Teal Sisters. A big day for us yesterday as we travelled to Nanaimo and Vancouver Island University to my one and only granddaughter’s convocation. She received her sociology degree. We are so proud of her and love her so much. Today we are home and are pooped, but now have time to rest.
4 -
Amazing @Hooodith so wonderful to be able to attend. Yes, you will be tired but so worth it by the looks of it! Rest my friend and remember all the memorable moments yesterday. 💕
Today is a beautiful day out and I am sitting under my gazebo smelling the peonies that are out in bloom nearby. Such a wonderful scent.
My parents are down from Belleville and we are enjoying some time together. My Dad is fixing our lawnmower and my Mom and I are just chatting about everything and anything.
I have now gone on a steroid daily to combat some of this bowel issue stuff and keep it at bay. Will keep you posted about it. A decision the Palliative doc and I came up with to help stave off this constant battle I fight.
How about the rest of you and where are you at with things? What is on your mind?
1 -
Hi ladies
@Hooodith what a lovely pic of you with your granddaughter, the resemblance is striking. It is beautiful outside today I'm about to hang some clothes to dry. I love the way clothes smell after drying outside. When I was a kid I always wanted my mom to put my stuff in the dryer as outside drying made my jeans stuff lol. I now appreciate it.
@Strongwoman the scent of flowers on a nice summer day is certainly high on the list of life's pleasures isn't it? ( Ok it's not summer yet but..)
Here's to hoping the steroid keeps your obstructions at bay for a long time.
I'm about to do some yoga then plan to get out of the house for a bit
0 -
@Hooodith How wonderful!! Such a special memory and wonderful pic of the two of you
@Strongwoman Glad you found something that is going to help. Steroids…interested in hearing how they help…whenever you have time.
I am feeling fine. Sure am getting annoyed with driving into TO just for bloodwork…but that’s what I signed up for 😁. The schedule will soon change to once every three weeks. Two more treatments then another CT. At least I will now have my CA125 results in the interim.
Funny thing…after my CT and CA125 results, I have been able to eat more at each meal. It’s not that I didn’t have an appetite, I just wasn’t eating a decent quantity. My mental state also improved. I didn’t realize that I was “off” but I have definitely been more upbeat since then.
That brings me to the next thing I was pondering…when a tumour shrinks, you have more space and can eat more? It makes sense. Since my results indicated minor progression, I am not attributing tumour shrinkage to my new eating habits. I am being a little more realistic and thinking that maybe my mental state has helped.
Over the course of about a year, I have lost 30 lbs. I can afford it and it was the weight I worked really hard with Weight Watchers to attain before my recurrence. Had to go out and buy some new pants! I have asked if they are concerned about my weight loss since I started the trial. They indicated that it has been gradual and they are not concerned right now. The nurse also told me to eat whatever I want and to supplement with Boost, if needed.
A couple of “regulars” at the Princess Margaret Lodge have completed their six-week radiation regime - I am going to miss them being at the Lodge every time I show up.1 -
Got my CT scan results this week. The cancer is back and has started to spread beyond the peritoneum. Since it recurred in less than 6 months, I think that means I'm platinum resistant. Not welcome news, but I guess it was bound to happen. I don't have an appointment with an oncologist until July 9th. Since I have few symptoms, I've decided to wait patiently. It's all new ground from here. Heading off to golf.
1 -
Good afternoon sisters. It’s a beautiful day here and I’m stuck waiting for a phone call. I was supposed to get a call from a nurse practitioner at 11:30 this morning and it is now 12:57 and no call. So frustrating. I have a CT scan tomorrow and a follow up call with my oncologist on Tuesday. I have had a lot of nausea the past few days so I’m trying not to let my imagination run wild.
@Hooodith what a lovely picture of you and your granddaughter! I’m glad you get to rest and recuperate today!
@Strongwoman I hope the steroids are giving you relief from your bowel issues and I’m glad you are getting some relaxing time outside!
@GloHo yay for having an improved appetite. I also have lost a lot of weight since my diagnosis. I am having a hard time putting any back on as nausea seems to be my constant companion. Funny thing I happen to be a Weight Watchers coach! Now my low fibre diet has me eating all the stuff I have avoided for years!
@jmbarrhaven I’m sorry to hear your cancer has recurred. Just sending you a warm hug.
0 -
OMG what a cluster f@#k! Yesterday I get a phone call from the Cancer clinic to book a phone appointment with the nurse practitioner for 11:30 today. I wait and wait she calls at 1:30 and apologized saying her schedule got totally screwed up. Any how she was checking on how I was doing since starting the Olaparib! I’m like uhhh I haven’t started it yet. She starts looking at my chart and says the order was sent to Cowichan District Hospital for my prescription on May 28th. Obviously they forgot to call me! While talking to her I asked her to confirm my phone appointment with my oncologist on the 18th at 1:00. She looked and there was nothing booked for that time! Anyway she was going to get on it and call me back. Within 10 minutes I had a call from CDH to say that my prescription was ready on May 29th and that they were sorry they hadn’t called…. WTF? So I will pick up my prescription tomorrow morning. 🤦♀️. So frustrating!
0 -
@JoanEG
Sorry to hear you’re experiencing increased nausea. Could it be related to scanxiety/stress?
I loved WW. The recipes were fabulous and, by default, my hubby lost a bit of weight too - he’s the cook 🤣🤣. It must be very difficult for you to change your eating habits.
Good grief! Just read your second post!! Such a familiar story for so many of us! We definitely know how you’re feeling WTF pretty much covers it 🤣🤣. Glad you got the drugs worked out…now for that phone appt 😵💫.@jmbarrhaven Sending hugs 🩵
1
