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)
Comments
-
At Princess Margaret Cancer Centre we have a portal and everything is uploaded to there. Every call every blood test etc etc. I do look through it but I guess people could choose not to. I figure it is what it is .... yes definitely scary for sure.0
-
Sending you positive vibes kattie666 all fingers and toes crossed for you1
-
@albertan we don't have a patient portal here at the Kingston Cancer Centre. But since I was originally treated at Princess Margaret I was given access theirs, and only recently has it been able to pick up lab reports from all hospitals in Ontario. Before my transfer to Kingston I used have access to everything...lab and scan reports, doctors note, the works and I used it. Yes, there were occasions where some of the info was a bit overwhelming or confusing but I used it to prepare for my oncologist meetings. I'd go with my reports and everything i wanted to understand better or ask about highlighted. Now I am able to only get my blood work but still find it really helpful in preparing for any discussions with my oncologist. My only warning is not to try to interpret too much yourself. You can scare yourself silly over something that turns out be of no consequence.1
-
@albertan I usually wait to see dr to get results as we don't have an online patient portal at my cancer centre. That said I did pick up the report from my last scan prior to visit as I wanted to review and have any questions addressed. For me that worked well and it actually told me something I would never have thought to ask.
Not sure if anyone else has this but I have a lot of gastrointestinal gas and figured it was just all part of this. Sort of is, chemo kills off gut bacteria so I've added high probiotic yogurt to my diet and just in a week it's made a huge difference... sometimes it's just the small things!1 -
Thanks @Readersmaven , great to hear you recovered well from mastectomy.How long have you been on Lynparza and what are side effects have you experienced?How long after you decided to have elective mastectomy did you actually have it?0
-
@albertan @Readersmaven
I have the BRCA but also the ATM gene. They are putting me on the high risk program but I am sure after I get through this they will talk to me about a mastectomy. I can even imagine going through another surgery right now.@Fearless - Vol Mod thanks. Our first ... my stepdaughter.... my husband is older ha ha2 -
@kattie666 let us know your results. We're all sending positive vibes and hoping for a complete response result.
@Readersmaven I was on an Olaparib/Lynparsa trial for almost two years. For me not as maintenance used as the treatment for my recurrence. An amazing drug and so effective. It was never assumed it would work forever for me and to get almost two years out of it has been a blessing. Hopefully now the chemo will knock it right out of me and leave me NED for awhile. But hoping you have great success with the drug.
@tinazzie sorry we missed you this week. Always next week, eh0 -
@albertan I've been taking lynparza for 7 months. I've been very lucky, no real side effects. Slight bone pain and fatigue but I just carry on, it doesn't hold me back and I don't even need tylenol.
It was recommended by someone on it to always take it with food, which I did and I think that helped me avoid nausea. I had real challenges with pre chemo steroids so didn't want to take a chance. Now that my system is used to it, I can take on an empty stomach!1 -
0
-
@albertan like @Readersmaven I tolerated the PARP well. Some initial joint and muscle pain at the outset but lowering my dose from 300mg to 250mg did the trick. After that really nothing to speak of.1
-
0
-
@albertan as for mastectomy, finished chemo beginning of May, saw a surgeon in September about possible mastectomy and she said, well I can do it next week! That was a surprise for sure, endedup having it about 2weeks later. For me it was easy and one less thing to worry about.1
-
@Fearless - Vol Mod thanks for sharing about lynparza.I have to say I am grateful to have access to this drug especially considering the cost...
0 -
@Readersmaven thanks for sharing and how long ago was that Sept surgery since any previous surgery?Did this include any reconstructive surgery?0
-
I'll be signing off for today everyone. I didn't contribute much but I appreciated the conversation! Take care till next week.0
-
Well gals, it's after 2 so time to sign off for another week. Great group discussions today. I hope everyone is leaving feeling more informed or uplifted or supported...or maybe all three.
Hope to see you all again next week. In the meantime, stay safe, stay well......
1 -
Thank you all for being here!Thanks @Fearless - Vol Mod for leading our discussion0
-
@Readersmaven wow that quick! I think I would feel the same and one less thing to think about. I would also get reconstruction. They took my belly button when they did my debunking surgery!0
-
@albertan I had my debulking beginning of March, just before covid shutdown. Surgeon didn't see a problem with performing mastectomy in September especially as it was elective and I have no underlying issues (other than OC!).
As said, I recover well from surgery and so I wasn't concerned. I try to be active and I feel that makes a difference.1 -
Have a good rest of the week everyone ... and wishing positive results for those going through tests and treatments.0
-
@CynP2020 yes it was quick but seemed like a good time to get it done as can't really go anywhere anyway! I didn't have reconstruction with either mastectomy, it's a very personal decision and it wasn't very important to me.
Good luck with whatever you decide!1 -
@Readersmaven I admire your strength.Reducing risk is definetely priority for me.I had my debulking surgery in August , am seeing breast cancer specialist this month, will see what they say.0
-
Hi! Home from my appointment. CT shows no evidence of disease!!!! Dr. is very pleased and said I am fully in remission. She is hopeful for no reoccurrence as it was stage 1C to start with. Follow up every 6 mopnths unless symptoms are noted. Great news!!3
-
2
-
@kattie666 Fantastic way to go!!!!! I am toasting my ice water to you from my hospital room!!!!! Congrats and stay healthy0
-
@kattie666 great news! Start the happy dance.
@Stayingpositive hopefully you're feeling better each day. Sending positive thoughts your way, take care.0 -
@albertan, Sorry to chime in late, but If you decide on getting your health info, I think you can sign up at "MyHealthAlberta" you have access then to your results..always good to discuss the results with your care team for the proper interpretation. Did you get the info I posted for Tracy K. Email. She can set you up for the monthly zoom meeting for western Canada. Let me know if I need to resend it.0
-
Hi everyone. Good to hear you are staying strong, working through the new 'norms' with treatment, COVID and Christmas. Stay safe and well.0
