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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On a personal note, I am four weeks into my trial and things are going well. The Avastin is causing muscle aches but nothing really. I was almost removed from my trial two weeks ago. I went for my standard mammogram locally as per my two year appointment. Was recalled for ultrasound and biopsy and then it turns out I have breast cancer in my left breast, unrelated to the OC. Not a good day for sure. The decision was to continue the trial and refer to breast oncologist (I saw the surgeon and he said I don't need him because it is small, hormonal and may be treated with a pill or something similar) and now I am seeing a medical oncologist next week for treatment options and another mammogram and ultrasound on both breasts as there appear to be some static things that showed up. Hopefully slow moving. One thing at a time!!! Really, what are the chances! I have to sign off now for a meeting. Hope everyone has a wonderful Thanksgiving.0
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@ToughAsTeal
I was recently on Caylex and yes they call it the Red Devil. Symptoms were not much, however swollen feet and hands were significant. I was told moisturizing was the key and I used a cream with Uretha 22% which worked wonders. Three times a day. Hope it helps!0 -
@Rad
always glad to have you pop in, if only for a minute. You have a wonderful Thanksgiving too.
@tailta
yes, her situation is not unfamiliar to many of our members and those blog posts were transferred on to her Twitter platform that I know others were following. The similarities to your situation must have made it difficult to follow sometimes. But we all have to remember how different each one of us is....how we respond to treatment...the timing at which clinical trials arise. It's never an apples to apples is it? For me it's not really about her end but how she lived her life with such a sense of purpose and with such compassion and grace. Sigh!1 -
I have to run to an appointment...have a happy thanksgiving ladies!1
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@Taita. you have a lot going on, and, I am a bit similar. mamogram/ultrasound in March...called back for 2nd U/S... and just had U/S this past Monday re monitoring a growth in left breast.
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@ToughAsTeal
I"m very sorry to hear of your scan results. You must be very disappointed. It's good though there is an option still available. I haven't yet had Caelyx but friends have. As Taita said, some skin issues seem to be common but moisturizing is helpful. I think we had some significant discussion on the topic in one or two of our Discussion threads. You might want to type in Caelyx into the search bar to pull up some of that information. Is there anything else we can help with rigtht now....other than one HUGE collective HUG?0 -
@tailta sorry you had to sign off but thanks for sharing your most recent news. I am so sad to hear about the breast involvement. Yes, what else, eh? Why can't just having OVC be enough ! Our thoughts are with you as you grapple with this latest hurdle. Please let us know how we can help. And the same to you @ToughAsTeal. I must ask OCC how common it is that the breast gets incorporated into the overall cancer picture for us. They may have some statistics on that front.
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@fearless yes found the threads last night -- I know I will learn more from my dr next week, but I do feel more informed after reading those posts and will be armed with some questions.
well, I am still thankful for much. have signed up for the symposium.
happy thanksgiving everyone. gobble gobble!0 -
@ToughAsTeal glad you did your research LOL. Your doc had better be well armed. I'm sure you have a long list of questions to answer. I really find that search element very helpful myself. Good luck with the Caelyx. I expect that may be my next option when I start to progress again. I suspect the platinum based drugs have run their course with me. We all get resistant at some point.
Looks like just you and me left today so I'll sign off now too. LIke you said, despite everything there is still lots to be thankful for.
Happy thanksgiving to everyone and 'see" you again next week. Stay well.
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@Fearless - Vol Mod thanks for posting the link for Nadia journal.I have started to read a few,hoping to read it all,she is such an inspiration1
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Hi @Fearless, sorry to have missed yesterday’s Teal Thursday chat.
I just wanted to say how sorry I was to hear about Nadia’s passing. I saw it on the news a couple of days ago and just couldn’t believe it. I remember chatting with her. She was always so supportive and encouraging to so many of us Teal Sisters. I didn’t realize she was in palliative care - thought her maintenance treatment had been working. I also didn’t know about all the other amazing things she did and championed outside of her life as a survivor. God bless.
@Taita and @ToughAsTeal, just wanted to add a little bit on the subject of breast plus ovarian cancer. In Dec 2019 I was diagnosed with IDC breast cancer in my left breast (invasive ductal carcinoma) stage 1. I was all set to have a lumpectomy to be followed by radiation. Then I just happened to mention that I was feeling some discomfort in the right hand side of my abdomen. The breast surgeon examined me and thought it might just be a swollen lymph node, but ordered a CT scan for me anyway. And then the rest is history as they say. The CT and subsequent US confirmed a tumor on my left ovary. The discomfort on my right turned out to be only an inguinal hernia. The ovarian (clear cell) cancer became the priority and following both oncologists’ recommendations, I had a right breast mastectomy with no radiation. The chemo I received for the OC following my hysterectomy, was also likely to provide some benefit to the breast cancer. Both were 2 separate primary cancers and I am not BRCA.
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The 14th today and another TEAL THURSDAY ON-LINE CHAT. Welcome to those joining us today.
How was everyone's Thanksgiving weekend? Quiet for us here but wonderful weather, loving the fall colours, and of course totally pigged out on turkey. As we chat here my famous turkey soup is simmering on the stove.
Question for you all. Is anyone else finding it difficult to keep the days straight. I was registered and looking forward to last nights speaker series session but totally thought the day was Tuesday all day, when it was actually Wednesday so missed it. I'm doing a lot that lately, so much so that I try to set my iPhone with reminders and leave sticky notes around the house a lot. Maybe it's age and not the cancer treatment or perhaps a combination of the two but definitely not feeling the old brain as agile as it used to be. How about you ladies???
A couple of reminders before we start:- November 5 & 6 is the fall Symposium. Highly recommend registering and at least following the agenda and tuning into the topics of interest if you're unable to participate in everything. Go the the OCC website or the Discussion topic I posted for the link to register.
- Teal Teas are coming up; all managed on the Zoom platform and require preregistration. Tuesday, October 26 is a general session; Wednesday October 27 is for Young Survivors, and Thursday October 28 for those survivors of 10 years or more. You can register by going to the OCC website/Events/Local Events and scrolling down to Teal Teas.
- For those in the Ottawa area, Ovarian Cancer Canada will have a booth at the National Women's Show. Have a girls day out and drop by the booth to say hello to the gals manning it.
So now it's time to say hello to everyone joining us today, regular participant and those new to us. Welcome everyone. Say hello .....how are you doing?.....what's on your mind today?
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Lol same happened to me last night and forgot the speaker session! Yesterday was f.u.at dr's. Bloodwork, all levels good except ca125 has risen (as expected). I asked why my next chemo is only caelyx, and not also avastin. Answer: no medical reason. I didnt "fit" the pharmacist's criteria. What's that?! .... money. I was a but stunned. Said i felt my life was worth it. Dr has gone back to appeal decision. I wont know more until tommorow chemo. Either they will tack it on, or they might wait til next chemo, or i wont get it at all. Any wisdom anyone have on this?1
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I wish I could answer @ToughAsTeal....and btw, welcome today. The whole subject of Avastin, how long you can take it, why some are stopped at certain points or can't get restarted after taking it once is all beyond me. Maybe it has been explained to me before and this weird brain of mine has just not processed the explanation so other than confirming that there are some rules around the dispensing of Avastin, I can't provide anything more than that Hopefully someone else can share more info on this. I'm more than curious...I start and Avastin Caelyx regimen in two weeks myself.0
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Hello. Yes, I have had to set my cellphone to remind me of anything and everything, as well as leave a reminder note to myself in the middle of the hallway floor.
i did not know that a pharmacist would be the one to make the decision about which drugs to prescribe for one’s chemotherapy. That is scary. If there is an option to pay privately then there is no denying we have a two tiered system, don’t we?0 -
Hello Ladies, how is everyone?I did attend the speaker series yesterday and found it quite interesting.0
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@PaulineJ welcome. Glad to have you with us today. And so happy to be hearing I'm not going crazy and others are suffering the memory challenges that I seem to be having lately. Hmmm, wondering if it's one of those side effects that becomes chronic or just disappears over time. The latter would be nice.
As for pharmacist's...they don't prescribe but they do have to monitor dispensing against the provincial rules around drug coverage so have a say in what your doctor is prescribing. That said, if there are options to pay, or have private insurance coverage I would expect to be told those options and allowed to decide what I can or want to do.0 -
@Tinazzie great to have you with us today. Wow, were there any particularly interesting or enlightening take-aways for you from last night's session?0
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i really feel tested since yesterdays appointment. Because i asked (pushed), they did a protein test (urinalysis), and i am well within range. My bp was 121/82. (I am sure it is higher today for being upset). And... i just got call for an echocardiogram (also requirement i am told) so... please let this be good sign maybe for next month. Now i am left to wonder, did my dr even consider it? Or not until i mentioned it? Same happened with zejula.
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Wow! I just blindly accepted the carboplatin/taxel combo I am doing now, never thinking that I should research other options. @ToughAsTeal you are much better informed, so on the right path0
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Yes, there were several interesting findings. Several were demographics and differences between regions. But a lot of similarities as well to do with symptoms, length of time between first visit to primary health provider and subsequent diagnosis.0
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@ToughAsTeal I"ve been just informed I'll be starting the Caelyx Avastin regimine and those tests are the same as the one's they've booked for me before I get starting on the 27th. Got an Echo on the 25th, they want full blood work same day and a urine dip. So I'd take it as a good sign. and hope for the best.; that being whatever you'regetting it's the right protocol for you. If they have eliminated the Avastin I'd push for a better answer from my oncologist or ask to speak to the pharmacist directly. At my hospital the pharmacy team are always quite willing to come down or get on the phone and answer any questions.
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Hello ladies. Beautiful weather still for October. I am planning a party tomorrow evening to celebrate my birthday, 18 months NED and a thank you to some friends for their support. Only 6 couples. One is a dance instructor and we will be learning how to merengue. Should be a night of laughter and fun. I am forgetting how to plan an evening as it has been so long!1
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@PaulineJ I'm in my fifth year of treatment now and if I've learned anything it's to deploy my natural curiosity all the time. I never just go into something without asking what other options were explored and if not viable, why? What other options might there be they haven't yet considered, and why? What about clinical trials..if nothing they are running at my cancer centre can they reach out to other centers that are viable travel-wise and see if there is something there to be considered. As with my own appointment with my oncologist on Tuesday, I didn't leave until all my questions were answered to my satisfaction. We have that right to question....feel empowered to use it.1
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Hello, it’s my first time joining the chat. I also have forgotten about yesterday’s session. Must have more reminders for myself.0
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@Fearless - Vol Mod, are you starting a new round of treatment this month? How many cycles do you anticipate?0
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@PaulineJ i am "letting it out" here, but temper my approach for discussions with the team. I always tell them "the source" of my questions, even with a "yes yes you told me mot to google, but i did". Some of my question re caelyx+avastin came from google. The zejula i had learned about because of the symposium last fall. I trust my team. And i believe they listen when i ask. Leave no stone unturned. Please dont think you you blindly entered into treatment.0
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Welcome @Bojenka to Thursdays chat. Where are you on this journey?0
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@CountryLiving well you have just turned me right around with hour party planning so thank you!!! I love what you are planning!0
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@CountryLiving Happy Birthday! Really like the idea of hosting dinner as a thank-you and celebration of NED. The dance instruction will be such fun!I have been scratching my bald head trying to figure out how I am ever going to thank all the people who brought/bring food, books, etc.0
