Live Nights Session- Friday 19th Feb 7-8pm AEDT
Hi all,
It's Fi here, OCA support nurse.
Welcome to our first session, please post any comments or questions in the 'Leave a comment' box, then press 'Post.' Any questions posted before then will be answered on the night. Please remember to keep refreshing to see any new posts. Thank you!
This discussion has been closed.
Comments
Hi Fi! This sounds exciting. I have emailed ocaconnect@ovariancancer.net.au to attend.
Are you please able to tell me more about the Teal Support Program? Who can join, is it free and what do I get from joining?
Thanks so much.
Thanks LeeP- great question! I'll answer this on Friday.
Please remember to keep refreshing the page on Friday for new questions and comments.
To anyone having trouble signing up or wanting to RSVP, please email ocaconnect@ovariancancer.net.au
Look forward to answering all your questions on Friday :)
Hi everyone,
Looking forward to answering your questions tonight. Just a reminder that it starts at 7pm AEDT and will close at 8pm AEDT.
Please remember to keep refreshing your screen to see new questions and comments.
Thank you,
Fi- OCA Support Nurse
Good evening Fiona!
Silly question, but how do refresh a page?
Hi Kristymay- welcome! If you go up to the search bar, where the website address is and just press enter :)
Thanks so much for organising this event. Your organisation does great work and I’m looking forward to the conversation.
Kind regardsGlenda
or press ctrl 'r'
Thank you Glenda and welcome!
Thanks, and, like magic, more comments come up!! Thank you, Kristin.
Hi Fiona. I Would like to know if short term memory loss is common after chemo? I finished Chemotherapy in December 2019 and finished Avastin August 2020.Lately i have been getting worse but mainly when iam tired or anxious. Regards Tracy
Fi is this how this Q & A is working? There has been no email to say go in to an address. We are just doing it on this page? Thanks, Cheryl
Hello everyone,
Welcome and thanks for joining. Please start sending in your questions and keep pressing ctrl 'r' to refresh the screen :)
Thank you!
Hello LeeP,
Welcome to Live Nights!
The Teal Support Program offers women with ovarian cancer their own ovarian cancer nurse. We support the women throughout their diagnosis, treatment and beyond and we keep in regular contact with their treatment team as well. Our aim is to reduce women feeling isolated and unsupported. All contact is via telehealth and it is free to join. You can read more information about the program here: https://www.ovariancancer.net.au/page/97/teal-support-program
Hi Cheryl, Yes, just make sure you remember to refresh the page. There is no zoom call so you're in the right place!
Hello friends, I'm on Lynparza/Olaparib long term. Over six years now. I'd love to hear about living with the side effects long term.
Thanks for your reply. I was starting to wonder if I had it right.
Hi everyone,
We've had a question emailed through:
Are you able to explain please why they test the tumour and what are the possible treatment options based on the results? Also how long does it take to get results back?
Many genetic mutations, eg, BRCA1 and BRCA2 mutations are inherited (called germline mutations), but in ovarian cancer genetic faults can also be found in the cancer cells (called somatic mutations). If your somatic testing comes back positive for a fault you can be eligible for some clinical trials and PARP inhibitor, Olaparib (Lynparza). The results of the testing can take several weeks.
Hi Tracy,
tiredness goes hand in hand after chemo, you just need to give your body time. I’m 7 years after my chemo and still get fatigued when I’ve over done things.
I don't feel many doctors really understand how long the fatigue can go on for.
We call it Chemo Brain in the Day Treatment Unit. It is a known effect from chemo causing you to feel a bit foggy. I am pleased to say it will decrease over time and your memory will became better. If you received an Understanding Chemotherapy booklet published from the Cancer Council you will be able to read up on Chemo Brain in the booklet: https://www.cancer.org.au/assets/pdf/understanding-chemotherapy-booklet. Hopefully it will get better soon. It is recommended you write things down, keep a diary and have questions ready for any doctors appointments.
Absolutely I agree, just be kind to yourself we’ve been through a lot both mentally and physically so just do what you can do it gets done in the end. I don’t think you are ever the same after what we have gone through.
Great question! Because Olaparib is a relatively new drug in the scheme of the things, the long term side effects haven't been researched and documented. But best to speak to your oncologist about this.
I agree, we are changed in so many ways. I like the expression "The New Normal". Though I do get sad about all I lost.
They don't know either!! We are trailblazers on the new drugs but it can be a bit lonely out there!
its been 6 months since i finished Avastin.I felt safe on Avastin and put up with the side effects as i knew it was working.I was NED after i had finished treatment but 2 months later my tumour markers started to rise and are still rising.My oncologist said i have active cancer cells and something is brewing and its just a waiting game.I was wondering has anyone else had a similar experience?
I'm coming up 4 years on Lynparza. Mostly I am good. The odd day I say to my husband it will be a slow day today. He tells me he looks into my eyes and can tell. I get "Panda eyes". Really dark circles around them. Most days I can do what I want to do. I also appreciate that my side effects are so much less than being on chemo.
Yes, it certainly is a journey! Please know you are not alone on the journey and you can always call the helpline on 1300 660 334 if you ever need to talk.
Sometimes you just need a couch day!