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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They are also considering PARP I, not sure if I am a candidate or which one but I have a question for anyone who has been on or was on PARP. Did anyone return to work while on them and how did you fare? thx0
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@mjmck21 it seems they are using transfusion less and less these days and opting for other ways to boost the red cells unless you have a really high anemia level. Good thing. I hated looking at someone's else blood dripping in to my veins..UGH. That was four years ago though, and actually haven't had any RBC issues since.
@MadBel give it some time. I find heat pad or warm hot water bottle can help. Sometimes these symptoms will disappear as quickly as they appeared.1 -
I'll be having a Rigid Sigmoidoscopy in a couple of weeks to have a look at possible blockages that are causing my ongoing constipation issues. I too have an incisional hernia following the hysterectomy. Before they touch that (or not), they'd want to take a look to see what if anything else is causing the blocking and therefore the constipation.0
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It is always helpful to read updates from everyone.I will likely register for June 8 research forum.0
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I registered for June 8. Looking forward to it!0
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@ToughAsTeal - thinking of you and hoping you get some relief soon.0
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@mjmck21 I was already retired, but know that I felt good enough I would have been able to return to work1
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@Tinazzie I refer to it as my Sigmoid Freud.1
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Wishing everyone a good week! Hugs....
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@Tinazzie good luck with the tests. Hopefully exploring will help identify some solution for you.
@mjmck21 if you go to the search button at the top right of the screen and type any of PARP, Lynparza, Olaparib, Zejula or Niraparib you can pull up lots of discussions on the topic. I was on Olaparib for almost two years. For me it was a clinical trial but no different than taking if for maintenance. I was retired by then so full time work wasn't on my mind but I did take on this work for OVd, I was able to consult to AstraZeneca, and I've been co-authoring a Guide to support women transitioning out of primary treatment with a partner at Queens U. So I was definitely up to being active mentally. The PARP can have side effects though but much of that can be managed by dose control.1 -
Have a good week everyone. Keep moving forward😀1
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Ladies, it the witching hour once again, time to say goodbye for another week.
Do try to attend the June 8 forum. It' will touch on some of what we've been discussing today.
Otherwise to all of you....stay well, have patience, find a piece of joy every day. And I look forward to getting together with you all again next week.
In the meantime........
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THURSDAY JUNE 9 AND TIME FOR ANOTHER CHAT SO WELCOME TO ANYONE WHO'S ONLINE WITH US TODAY.
Who attended the session last night? I registered but my husband arrived back home from a short trip a bit earlier and before I realized it our chatting with each other had overlapped the session and I missed it. I will look for the recorded version though. It should be up in the next few days. For anyone who did attend, how was it? Any 'ah ha's' that surprised you or added to your knowledge?
For those in Ontario, the masking mandate has ended. I understand some hospitals and care facilities are choosing to keep theirs in place and, of course, it's always our option to wear a mask at any time. And our little local live support group is having its first get together in two years tomorrow. Those in treatment have all stayed connected throughout Covid anyway but it will be nice to see them in person again, although our chemo schedules fortunately coincided a lot so we used to call the chemo room at KGH our mini meeting area. I wonder how many live groups have started regrouping again?Well, it's going on to 1PM so we're about ready to start our chat for today. Who's with us today? Say hello and tell us what's on your mind.
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Hi, I did follow the seminar yesterday and found it most informative. Great choice of doctors / researches. Good questions also.0
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Happy Thursday! I haven’t been connecting much for the last bit. Have mostly recovered from the viral infection that started a month ago. It has really taken a toll on me. Beset with cankers and all the other fun stuff that go along with Taxol but managing. Sometimes I think it just takes time to get a handle on things and they become easier to deal with. I was on the seminar last night. The first part was a bit too long and cut into the time of the following discussions which we’re fascinating. Really enjoyed it. We have such knowledgeable doctors and supportive folks on our teams!! Quite distressed about the mask mandates coming off in Ontario. Such a simple thing to do and this will just increase risk for everyone. Looking forward to our trip to Italy in 20 days!!0
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Happy Thursday! I did the session last night except last 15 minutes or so. I got way more out of it than expected. I was actually dreaded the thought of 3 hours at first. I thought none of the info would really pertain to me. Wow I was wrong! Great format!I am anxious about the masks lifting. I will still mask, but even if friends want to visit I will still be asking either for indoor mask or outdoor “sit over there” visits. I have had my 4th dose. If we get to the fall, and numbers stay low, I might be less worried.1
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@Taita these next 20 days will go so quickly for you!1
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@Taita that's great feedback on last night's session. And I'm so glad you're over the hump with that virus. Just in time for your trip. Wow, only 20 days to go!
I'm not as concerned about dropping the mask mandate as I thought I would be. I guess I now just look at it as being at choice and so many facilities are opting into keeping it, along with so many people opting to still mask I think we're in fairly good shape. Of course now we have the Monkeypox to contend with.1 -
It was interesting to hear about the PARPi although I am not eligible for them since my cancer is not genetic. Do I have that right?0
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@Bojenka I am brca negative (not genetic) and was suited to be on PARPi after my chemo ended2
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Sounds like I"m going to have to listen to the tape when it's released. I didn't realize I'd missed so much. But I have to also admit I'm cautious about the use of my time. Three hours on line did seem a lot to me last night or any night.0
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@Bojenka @ToughAsTeal I too am non BRCA and I was on Zejula shortly after my first line. It has just been approved in Canada Oct 2020 Unfortunately my cancer came back in under 6 months and I had to come off of it. @Bojenka as they said last night. Rules are changing all the time so keep asking 🤞1
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Hi everyone, I was on last night and found it very good. Although I am HGS I found the discussion on LGS very helpful in understanding how biomarkers can potentially target individuals for better outcomes with PARPs including who would benefit and particularly the dosage. I also learned more about how those standard of care decisions are made in the absence of specific bio marker information. The how it all works and what we know, what we don't know and what may be on the horizon is important in helping survivors work with their oncology team or participate in clinical trails. I will need to make some of those decisions in the next few weeks/months.
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@Fearless - Vol Mod the recording is already up. I saw it on Twitter this morning. They were fast!1
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I would like to hear maybe if there is anything new in research re early detection too.0
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I'm frustrated that we do not have HRD testing available in Canada. I have read all of your comments regarding this and am pursuing it with my oncologist to see if there are some other options but it looks like it will be coming soon according to Dr. Lee last evening.
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JUst not in enough time for my decisions.0
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I guess the question for those BRCA negative but have been on a PARP but then recurred is whether the PARP failed or did it at least delay the recurrence. To me even a short delay is still a win.1
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Thanks for sharing ToughAsTeal. My oncologist didn’t recommend it for me, although that was 1.5 ago after my first chemo. I have recurrence and going through chemo. The CTscan after 3 chemo treatments showed slowing down of disease but very little shrinking. Next time I see the oncologist I will be asking for options. Wondering if immunotherapy is something for me. Does anyone know if immunotherapy is offered in Ontario ?
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