Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. 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 Peer Support Volunteer. 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).
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Surgeon said discharge would not be abnormal. Just wishing for a break0
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Gals, been mullling over the fall and winter and was thinking it might be a fun way to acknowledge the December holiday season by making one of these chats in December a Zoom. We have so many regulars now would it be fun to actually "talk" to and see each other? What do you think? Some might feel it infringing on the privacy our online process affords. Some may be conscious of their appearance and not want to be seen. Personally after all this time getting to know you I have images of each of you in my head and would love to see how bad I am on picturing people LOL.1
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@ToughAsTeal
I don't believe there will be. There are private meetings being arranged. The last Day on the Hill was prior to Covid and there was a reception at the end of the day to say thank you to everyone. That isn't happening this time for a number of reasons. I will make sure I update everyone here after the meetings and I am sure Cailey at OCC will put something on the website. I will mention it to her. We have lots of champions in Ottawa on all sides of the aisle and so I expect a lot of positive feedback. Stay tuned.....1 -
@Fearless_Moderator I’m in. Will start looking now for best light in the house for an in-face!0
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For those who many not know, Taita was the Liberal MP for Peterborough (hope I got it right) until she stepped down so she's had lots of experience with political landscape and the Hill.0
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@ToughAsTeal
Are those what they would deem "normal" after having an ostomy? I imagine that your insides are very angry for being probably aggressively handled while they did what they needed to do. Visceral pain is so different from skeletal (muscle) pain. When you have peristalsis, it would aggravate it while it continues to heal. This may not help but maybe might help to explain some. Still pain is not nice no matter what kind of pain it is and we all want it under control. I hope you are able to manage and your team can adjust your meds as needed.0 -
@Fearless_Moderator
The speaker next week sounds interesting. Hopefully I can join in and listen.0 -
@Fearless_Moderator
I love the idea of a Zoom call in December!! Maybe even a celebratory cocktail or mocktail as well?
Those of us who are okay with being on screen can and if someone is having a "bad hair day" as they say, we respect their privacy of putting an avatar or whatever in place. We have all been there! Voices would be lovely as well. For me it is weird, I kind of have anonymity on this blog so I respect others and try not to identify too much, but as there have been a few newspaper articles published about my journey I feel I am open book!0 -
@Fearless_Moderator
On a different note, I did a mini holiday with my Aunt for her 80th birthday with a bus tour to Pittsburgh. It was very enjoyable. Didn't get to see the Andy Warhol museum but the 3 Sisters Bridges are pretty amazing to see. There is a university there which is very worth seeing. Every room was decorated by a different nationality to represent their country. Truly amazing what they came up with. We saw the bottom floor which was the older part but apparently there are new rooms on another floor with updated versions.1 -
@Strongwoman Thankyou that is helpful to read. Trying 1mg Hydromorphone every 4 hours. Lots lots lots water0
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@Fearless_Moderator
I would be open to a Zoom call and welcome whatever I look like on the day. Since it will be a true representation of myself at that time.
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@Fearless_Moderator
Close! MP for Northumberland-Peterborough South. Was on the finance committee for the April 2019 budget. Who knew less than a year later I would not only be a huge supporter of the Teal Sisters, I would be one. Life changes on a dime as they say. 1 -
hahaha.....as I said I would be in and o
ut during this as I put away groceries.
Just went back to see what I could do and realized I left the fridge door open! See no ONE is alone in that aspect of things. 1 -
@Taita the word cocktail has now convinced me to see what I can do to set up a holiday zoom (BYOB) for sure. So stay tuned on that front.
@ToughAsTeal have you tried Hydra combined with a couple of Tylenol? ER told me to use that combination (1mg Hydromorphone with 2 extra strength Tylenol) when I have a Gout attack. Ir sure did take the edge off for me. Do check with your doctor first though.0 -
@fearless I will take that to my follow up with surgeon on Monday Thankyou. The 1mg current was from my palliative dr. The surgeon had prescribed 2mg every 4 hours, and told me to follow up with palliative0
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Signing off everyone. Really enjoyed our conversation today. Have a great weekend!!0
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2pm gals and time to say goodbye for another week. Agree with Taita, only four of us and yet a very healthy discussion with lots of interesting news. @ToughAsTeal you take care and hope your pain can be managed quickly. But also thank you for taking the time today to join us. Hugs to every one else and "see" you next week.
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Have a good week everyone. I always feel lifted by our once/week chatters! Keep moving forward1
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Good morning everyone, i guess better late than never. Slept late.
@Taita that is great to hear about your meeting in Ottawa. You go girl!!
@ToughAsTeal so sorry to hear that you are still having issues with pain. Sending lots of well wishes your way. For me I can no longer take hydromorphine as i get severe stomach pains even at low doses.
@Fearless_Moderator. Yes I think a zoom would be a wonderful idea.
@Strongwoman yes i am so jealous hair done and colored. I found myself when i had to leave work when i started my treatment hard as well. I was really hopeful that i would be going back to work early this yr. But alas to find out i redeveloped nodules after final treatment was hard and had to make some adjustments to income as i was put on PWD.
As for myself this past week. I havent noticed before but just realized when my hair was growing in it was back to nice and thick. But i just noticed a few strands of hair here and their coming out when i would run my fingers through my hair. Mmm i then felt my hair and noticed it thinned out alot. Oh noticed that caeylx its says can cause hair thinning.
No word yet on those trials yet or if i start next treatment. In the meantime i have gone on to the occ watched and old video on trials and other videos on their. I also checked out into on these 2 trial drugs on ov can, canada cancer society and national cancer society as well. Their was a short video about these immunotherapy drugs that are now in trial.
I did google here to find out if anyone was on a trial for these drugs. Only found 1 back in 2017 one lady did it and she had good outcome. But nothing else. I am a bit aprehensive about these trials as they normally are for lung cancer and a few trials were done for those and rectal cancer etc.
These immunotherapy can inflame your organs lungs kidney liver. From a short video i watched. I did find a anex summary on both these drugs. Alot to read though. 1 is 47 pages long another one is 37 pages.
They do list severe adverse reactions list from these drugs. My oncologist said yes they do have to mention those. On other note you can benefit if it works to be one of the first ones to get it.
I would like to know if anyone of the teal sisters are currently enrolled in these trials and how they are fairing?
Being that they are now including ovarian cancer patients.
If you do end up getting a grade 2 or higher adverse reactions that could be serious i read that they withhold the drug and put you on cortisone until it goes lower than grade 1 and you would be on those for a minimum of 30 days. And dosage dépendant.
So this is why i would really be interested in a seminar on these immunotherapy trials.
Ive tried to find some good stories i did see some one one of the drug sites but nothing in ovarian cancer patients.
I did find 4 stories that made the medical journal but those were not happy outcomes. I am determined to find some positive results on the search but so far nothing yet for ov. I do make sure anything i read has references and research to back up their claims.
I would like to see if we can perhaps have a video conference with some experts to speak on these trial drugs or just about the immunotherapy drugs in general.
Other than that yes for me too its been nexflix and prime. Ty to my son for setting those up for me under his account. Still dealing with my gastric issue ive had now for a few months. We did the h ploryi drugs because of all the symptoms. Had it last yr and about 8 yrs ago. Meds worked until last 3 days when i had my 6th sesson of treatment it then flared up. So they have me on a different ppi. Razeoprazole and also 300mg of randitine i take a night. It serms for most days really good but yhen i am popping gaviscon at bedtime
Been in to re-see my family dr he said lets give it a bit more time, but its still not cutting it, so i think back to see him. Other hand using drops for a eye infection pink eye i believe. Started to get better over the last 2 weeks ok back off on drops nope flares back up. Maybe talk to dr again about that.
Been starting to notice pain again around my tumor area so i am hoping i hear from my oncologist today or tomorrow as she did say she would touch basis with me if not i'll call her Monday if i haven't heard anything.
On other note sad to say my new landlord that bought the orchard i live in wants to take over this second house as well so now i have to find another place. Ha good luck with that. On my budget places are so high.
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@Eileen thanks for the update and sorry you missed the live session. But we have many, ir seems, who can't attend but do review the commentary after. Thet;s the value of an online chat room versus zoom or other live platforms. In the latter after the session is complete you've lost the commentary, often valuable informmation. As an FYI to you though. You've asked for comments from members who might have been on immunotherapy. To get responses to specific questions you should post your enquiry as a Discussion thread. These reach more members and this particular thread is really only for those online on Thursdays. However, I'll do a cut and paste of ask of OCC to include the topic in the Symposium or one of the Speaker series. They do value these suggestions so thank you.
Sorry to hear all you're seeing is negative information on the immunotherapys and your searches are not turning up what you're hoping to read. Personally, I would stop googling so much and have my questions addressed by my cancer care team. One can overwhelm themselves "researching" . Yes, it's important to better understand the disease and keep current on new developments but the internet can be both helpful and equally dangerous, especially to the layman who might misinterpret information that's put in more clinical terms or not have all the context.
Hope you can join us next week gal and you get some relief from your discomforts. FYI, the Caelyx can cause full hair loss or at a minimum increase thinning. Like you I'm now on cycle 12 and while I'm not "bald" I do notice more hair in my brush and collect more in the shower drain. I've gotten used to it since no one seems to notice.0 -
hello all, this Sept 22. Feel very nauseated from chemo yesterday so I won’t jump in this week. Hope all is well. Keep moving forward🌻1
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Sorry to hear. I'm on. Treatment for me this past Monday ..head foggy today so staying close to home0
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Good Afternoon my Teal Sisters,
What a more cool and fresh feeling day today. What has everyone been up to and how has your week gone?
I can say that I, personally, have been on what feels like a roller coaster. I had a rough day on Saturday with pain, did the Terry Fox Run (but walked) on Sunday and did the 10 km, was very fatigued after that for a couple of days, had a very emotional day on Tuesday and feel more like myself today. Up and down and round and round we go with this.
Today brings my day starting with taking a few (more than a few) years' worth of income tax stuff to the dump to use their giant shredder with my Uncle earlier this morning. Made a pumpkin square base with cream cheese icing and pumpkin chocolate chip muffins. I am making a roast chicken dinner for the family today as it certainly feels like that kind of day.
I am still awaiting my approval for Trametinib and doing my very best to be patient with the wait.
On another note, did anyone participate or listen in to the Speaker's Series last night? I did for its entirety. Anyone have any questions regarding what was discussed last night? The 2 Teal Sisters that spoke last night did emphasis a couple of times the importance of the Teal Tuesdays and how helpful it was to them. If they are on today, a BIG thank you for that!
@ToughAsTeal How did you make out with your medical appt this past Monday? Did you get any answers or help with your concerns?
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GOOD AFTERNOON ON THURSDAY SEPTEMBER 22.
Still waiting for that last blast of summer. So far, where I am, it's feeling more and more like fall. I do love the season but hope the leaves wait a bit longer to begin that glorious turn of colour.
How is everyone today? Those in treatment?, Those who were waiting test results? Started Cycle 12 Day 1 of my Caelyx/Avastn dose yesterday. Went just fine, as usual. A wee bit concerned my CA went up 400 points to 2300 this round but it may just be a reaction to the UTI I was being treated for. Guess we'll see if it's a trend or just an aberration. Next CA accompanied by a scan in a month so that will tell if anything is going on that needs to be dealt with.
Question for all. How are you finding your cognitive skills? Gosh, I'm finding my short term memory really really bad these days. I promised ToughAsTeal a list of my recently bingeable Netflix, Prime etc.viewing. Dumb systems don't give you your historical views so you have to muck around to find them. Not so bad if you have any memory at all. Not so easy when you don't. But not just that. On this platform if you give me your name I can usually remember much of what you've shared about your disease. Now I mix them all up or draw a blank. So do forgive me if I ask you something I should know or say something that applies to someone else. Anyone with the same challenges who might have found some good work-a-rounds or help restoring memory I'd love to hear from today. And don't bother suggesting keeping notes. My house is so plastered with Post-Its that my husband thought I was trying out a new wall covering LOL.Well it's getting around to 1PM so let's get started. Please say hello and tell us what's on your mind today....just need to blow off steam. this is the place to be. Want to share a success....this is the place to be. Need some help from a bunch of gals 'who get it" ....this is the place to be. So shout out!
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Strong woman. Amazing ambition. Putting in the work and keeping life first0
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Thanks for the update @Strongwoman. You've really got this, as best one of us can. Stay busy, be productive, satisfy your own curiosity, be patient. Those are all the things I read in your message. Let hope the approval for your drug comes through soon. You have been patient on that front for sure. The bureaucracy behind getting this drugs to the end user can be painful but all the steps they take are really to protect us.
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I .am using my phone today. I seem to find comments are slow or don't auto refresh. Am I missing something?0
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@ToughAsTeal
I am so sorry you're feeling the nausea today. Your comments are always either so insightful or full of that robust sense of humour you have so we'll miss you but understand. I won't go into recommendations to control the nausea. We've both been battling this long enough to know them all. So just curl up in bed knowing it will pass eventually.0 -
@Fearless_Moderator
My short term memory sucks! I lose words I should know, know what I am talking about in my head and then can't spit it out correctly.
As for keeping it up........I am doing what I can. Some days it is tough as many of you know.1 -
@Bobby
No it does not autorefresh, you have to manually do it in order to see the messages that come through.
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