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).
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
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@Tinazzie Thanks for the compliments. Zooms are the only time I actually put a wee bit of makeup on.
@Sylviequebecbc yes, you can talk/ask about anything on your mind. We're very free flow in this chat room. Sorry to hear you had a reaction to the carbo too. I was told last night that it's very common to happen after several sessions rather than at the beginning like other chemos. It's one that builds up in your system so the longer you're on it the more likely to have a reaction. Ha ha, the on-call told me my reaction was mild. I'd hate to see a bad reaction!
@Readersmaven I hope the radiology goes well. Just take it each day at a time and don't get yourself overwhelmed. I have friends who've had it, but for breast cancer, not OVC and they've all said they were fine with it. it'll be over before you know it.
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Great to see so many others have joined. @Elsie13 I think you've been with us in past. Still NED I hope? Welcome back @Annie1950 @CountryLiving @Rad
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@Elsie13 Wonderful your last CT and tests were fine!
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@Fearless - Vol Mod @Tinazzie thx for the support. I'm sure radiation will be fine, apparently it can take longer to find parking than the actual treatment!
I think it's just the unknowns that cause us stress and as I like to be in charge...LOL ... I don't do well with giving up control. So I'm constantly surprised on this journey by the impact of some things.1 -
Hi ladies glad to be here today.I did watch the webinar yesterday and @Fearless - Vol Mod I thought you did a great presentation and also since you had chemo as well.I had the same reaction you have on my first chemo and it was for taxol.The nurses were awesome as well, stopping the treatment and flushing the lines out and also giving me hydrocortisone. They then continue my treatment that day starting at a slower rate and gradually increasing. I never had back that reaction but every time I go for chemo they would talk about my reaction and start at a low rate.0
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@Readersmaven you and I are peas in a pod. I'm a Type A...total control freak. Hence I continuously study this disease so I'm on top of everything. Even have real time access to my blood work so I often see it before my oncologist does LOL.
@Rad when I went through chemo the first time I had so severe a reaction to the Taxel that I ended up in acute care with my heart wired up and saline flushing it out for 7 hours. They didn't even want to try again so switched that to Gemcitabine which was just fine. The Carbo I had with was fine all the way. So when I started to react yesterday I panicked expecting to hear "bring the crash cart" like they did with the Taxel four years ago. Fortunately not that bad and knowing my oncologist she won't give up without trying something to mitigate...maybe more or different pre meds and yes, slowing down the infusion. I hope so and that it works...I only have two more sessions to go now.
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BTW, has anyone noticed the font on OVd has gotten really tiny all of a sudden? I noticed mine changed about a week ago, yet nothing else on my laptop has.0
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@Elsie13 - nice to hear from you and great to hear that all is well! You mentioned that you recently had a CT scan and blood tests "of course". Has that been your usual course for your follow up appointments? Strange how different centers still have different follow-up protocols. I have only had one scan and blood test - which was for my 1st post-chemo appointment - and that too at my insistence! I am now 6-months post chemo. I am on a quarterly appointment schedule.1
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To all: my hair doesn’t seam to grow as fast and full this time as compared to last winter after my first chemo cycles...is that normal? Anyone else?0
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@Fearless - Vol Mod @Sylviequebecbc, I had Carbo/Taxol in 2017. During chemo #4, I developed a rash across my upper chest. So yes, they stopped the chemo, then restarted more slowly.
So for chemo #5 and #6 I had these pre-med pills to take: 4 pills at 3 AM the day of chemo, and then 4 more around 8 AM. Those worked. Everything was fine!0 -
@Elsie13 @Fearless - Vol Mod , I was already on a pre-med protocol since I also reacted in 2016 to Caelex... I guess They are waiting now and will see me every 3 months, unless I get symptoms in between visits. No tests or scans planned yet.0
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@Tinazzie one thing we hear frequently is concern about the post chemo surveillance process. What I've come to see is that every province has different basic standards..although most line up the same. And then it goes by oncologist standard practice and the patient themselves. So you'll always find survivors who have more of something, and or less. The average I see is a check up about every 4 months in year 1 with that gap getting larger over the course of the next couple of years if all remains stable. Some oncologists opt for a CA with the blood work every check up, some don't unless you're exhibiting any symptoms in which case that becomes the first step to investigate for any possible problems arising. I have found though that if you ask your oncologist to include a CA with all blood work...for your emotion well being....most will comply. That said, we all have to remember that test is not the most reliable...one of the reasons they hesitate to use it unless there is a reason. As for scans, they are normally reserved for times where there are symptoms and a couple of CA's have shown a trending upward of concern. Otherwise most don't do them ad hoc..given cost, time, and addition of more radiation into your system.
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@Tinazzie, my chemo and radiation finished in the summer of 2017. I had blood tests every three months after that, then every 4 months, then every 6 months. I have an annual CT scan. My pathology (end of 2016) showed some clear cell cancer, which they say is aggressive, so maybe I got more blood tests due to that?0
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Good to hear about the work arounds some of you had to overcome reactions. That gives me hope I'll be able to continue with the Carbo to the end.
@Sylviequebecbc I can't comment on the hair. Once of the advantages of being switched from Taxel to Gem is that there is no hair loss....but I'm sure others here can comment on their experience.
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Thanks @Fearless - Vol Mod - that makes sense. It's just a little unnerving sometimes because in my own case, there were no real "symptoms" and it was found only by chance during a CT scan for something else!
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@Sylviequebecbc, I had the 6 chemos in 2017, and no more since then. When my hair came back, it seemed the same thickness as before. But since then, it seems to have thinned out just a little. I'm in my mid-sixties, so maybe it's just age related, for me.2
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@Tinazzie and that might mean your standard of care will differ a bit. What I described is the basic/normal. But when they factor in the patients' particular circumstance..and that often also includes their emotional and anxiety levels they adjust accordingly. That said, never any harm asking for more than you're offered. As we all know on here...we need to become stronger advocates for ourselves.
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Well my Teal Sisters and fellow survivors...it's after 2 and time to go for another week. Before I sign off I must thank all of you for your kind words of support and suggestions. I may be the host on this chat but I'm a survivor in treatment just like everyone else...and some days not quite as Fearless as my screen name implies.
Hope everyone found some value today...especially our newbies. And always wonderful to see our returning survivors join in week after week or circle back after an absence.
Best wishes to everyone heading into treatment or check ups this coming week and for those NED...continue to stay well.
See y'all in March !
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THURSDAY MARCH 4 LADIES.....IS SPRING GOING OUT LIKE A LION OR COMING IN LIKE A LAMB? Somehow I feel positivity in the air......tulips just around the corner, a walk in the fresh spring air coming soon, distribution of Covid vaccines progressing.....so much hope for a better year to emerge for everyone. I know, just like our treatments, it seems like forever, but knowing there's light at the end of the tunnel to return to better times is so invigorating and inspiring.
A wee bit of info to share:
For those unable to attend the virtual presentation Demystifying Clinical Trials, the video is up and available now.
https://www.youtube.com/watch?v=mmp-Cz4gjR0&feature=youtu.be
Also on the topic of the new Speaker Series, the next offering, focused on your emotional wellbeing, will be a two-parter led by Jennifer De Wet Turner, Registered Psychotherapist and Certified Spiritual Care Practitioner. Some of you may recall her session in the September virtual symposium that was so valued. So save the dates of March 24 for the 1st part, and April 21 for the 2nd. Likely 7pm EST but stay tuned for a formal registration notification. I can't wait for this !
And on those happy notes......let's chat ladies. Who's with us today? How are you feeling? What's new for you? Anything achievements we all can do the happy dance for? What could you use some help with?0 -
It has been a few weeks since I was able to participate in the discussion. But..I have read every single comment. I will unfortunately not be able to stay today and I have to run out in a moment...but wanted to pop in and say hi and I hope everyone is doing well. I will read all the comments later but, for now...got to run.
I miss you all.0 -
Sorry we'll miss your participation today @KarenBemi but glad to hear the archives from previous chats are of value to you. Hopefully you can join us again in the future. You've always been such an inspiring contributor. Have a great day!
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Just a reminder to any new members with us today. You must sign in to OVdialogue and then click on Teal Thursdays to participate. If you are viewing in Guest mode that's fine but you can't participate in the chat in Guest mode, only view.0
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Well, it's 1:25 and I can only assume that everyone is experiencing the beautiful sunny day and blue sky I can see out my window and time you've all been inspired to get out and enjoy it. I'll keep the live chat open until 2pm and check back periodically to see if anyone has joined us today.0
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Hi Fearless!
Is it just you and me?0 -
I think I'm hearing an echo, maybe its only me this week, I will sign off and check back next week. Hope everyone is doing well.0
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Wow, i kept refreshing and you weren't popping up @BeamBlossom Wonder who else might be there.0
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Well it's 2pm and I thought I was all alone until @BeamBlossom commented and there was a long delay before it registered and she popped up as an active member. I'm wondering if anyone else thought no one was here....a system glitch? I did refresh constantly and even checked my internet. So I had expected perhaps everyone was otherwise engaged enjoying some nice sunny weather this afternoon.
Very sorry if anyone else was left hanging today. I was here....had a wonderful chat with myself, searched out a great recipe for chicken cacciatore to make up to my husband for being very irritable last night from a double shot of Dex for my chemo yesterday, and shopped on line for some throw pillows I've been wanting for ages.
I will be back at 1pm EST next week again. In the meantime, please stay well...and reach out in a Discussion thread or private message if I can be of any help.
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@Fearless - Vol Mod - Sorry you were all by yourself yesterday. I would have chatted with you but I had a meeting for that dang work stuff out of the office and I had to leave.
I hope you are well and I hope you are continuing to progress well in your treatment.0 -
@KarenBemi thanks. Very unusual not to have at least a handful of the members. Beamblosson did join later on but her presence or hello didn't register for almost a half hour. So may be something was happening on the platform. I'm doing fine. They're going to manage my reaction to the Carbo last week with extra pre meds and longer infusion time when I go in again on the 24th. In the meantime, its working fine but like everyone else, I'll be glad when it's over...2, maybe 3 cycles to go. Hope you can make it next week. Stay well.
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@Fearless - Vol Mod Glad to see they have a specific plan to manage that Carbo reaction.
Earlier today, I tried a couple of times to get here, clicking on an email link. Each time a screen popped up saying something like "something has gone wrong, try again later."0
