Spring is getting closer! Welcome to the Teal Thursday chat for March and April.

Teal Thursdays are an opportunity to connect 'live' with others by posting in the thread below. While the Teal Thursday is set for Thursdays at 1pm Eastern, feel free to add to the conversation when it works for you.

If you have any questions, please reach out to me, anytime. 

Marianne

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Hello all...I'm posting a bit early today and will be online until shortly after 1pm. I'll be off to the airport after that to pick up my son, his fiancee and our granddaughter. Yippee they've come for a visit in the land of warmth. I'm very excited to see them. It's also great as my son get's to see my parents (his grandparents). They are both 88 years old and take great joy in seeing him plus their great granddaughter, plus my son's fiancee whom they love deeply.

How is everyone doing out there? I've been "hitting the gym" quite a bit lately. I started to up the weights component of my workout. I'm not gonna lie...my body is feeling it but I need to get tone and definition back. Plus as we all know, weights are very good for our bones.

How are folks feeling? Anyone done anything interesting lately? Anyone have any burning questions? I always love to hear from everyone. Look forward to seeing who will be online today.

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@Alwayslearning so happy your son and family are getting to spend sometime in Florida.  How much longer are you down there for?  Great job on adding weights into your routine, something I think about often but haven't done yet.  My friend and I talked about trying yoga an a joint program to help with movement.  I made it to my 6 months NED.  I will be heading to Europe next Saturday and will celebrate my birthday in Amsterdam this year.  Hope everyone is well.  Spring is coming!🩵🙏🏻

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Hi @Meinvan ... thanks. We've spent a lot of time in the pool with my granddaughter (the fish 😂). We are here a little while longer after they leave.

Congratulations on 6 months NED. 🙌 I hope you celebrated. Have an awesome trip to Europe. Other than Amsterdam, where are you going? We did a wonderful bike tour in Amsterdam last fall. It was awesome. Eat Stroopwaffles!!!

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@Alwayslearning thank you.  We are headed to Amsterdam and Paris.  Yes looking forward to eating a stroopwaffle.

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@meinvan Enjoy your travels! It will be spring there.

Sent from my iPhone

@LizR thank you.🙏🏻. Yes, I hope the weather is nice🤞

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Really unsettling that follow-ups are not standardized. Are there not guidelines? I will do some research. If you have recurrence of your ovarian cancer is in a single site you will likely benefit from a 2nd R0 surgery! So yes, please advocate for some follow-up - tumor marker or imaging.
I am on Avastin - and developed proteinuria! I keep going because it can be managed. But I get bloodwork and urine check every 3weeks before the infusion. It is important!
Next to advocating, if you feel that your treatment suggestions do not make sense, please get a 2nd opinion or within Canada or outside.
I am at PMH but also I went for 2nd and 3rd opinion. It is my life on the line….and nobody minded that I can back with some new ideas for my treatment.

Hello from Vancouver Island,  I haven't posted for quite some time but I do read all of your posts.  This week we had our first snowfall of the winter!  I think Mother Nature saw we drastically needed a snowpack in our mountains and decided to give us a little.  
I was quite concerned to read that some are not receiving much in the way of follow up!  That is sure the opposite of what I have received here in BC.  I had 6 rounds of chemo, surgery followed by 2 more rounds of chemo which I finished in May 2024.  I started Olaparib in June of 2024.  For the first year I had a CT every 3 months as well as full blood work including CA125 every month.  Since then I still get bloodwork once a month, bloodwork including CA125 every other month along with an appointment with either my oncologist or the oncology Nurse Practitioner and a CT scan at 6 months.  I will be finished my Olaparib in June and my oncologist will decide what comes next then.
In the meantime I'm just living my life, spending lots of time with my great grandkids and enjoying feeling strong and healthy!

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Hi @JoanEG ... always nice to hear from you. So glad you are feeling strong and healthy and enjoying time with the family. Hopefully that nasty snow has now melted but my sense is you west coasters had a pretty nice winter so lucky you!

I had a questions relative to your Olaparib. I see you finish in June. Can you remind me, if you are willing to share, are you on the full dosage (600mg/day)? As well, has your oncologist given you any indication whether he/she will enable you to continue on with it beyond June? I'm curious as I approach my two years in August. I've been at full dosage the entire time. I'm on a Facebook page for Lynparza folks from around the globe. It is wildly inconsistent on how Olaparib is supported beyond the two years. Some have been on it for 10-11 years! Others have stopped at the 2 year mark and been to that if they recur, they would be eligible to go back on it, indefinitely.

So I'm gathering some information for when the time comes for my discussion.

Thanks!!

#Treatmentandsideeffects

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Good morning@Alwayslearning

I am on the full dose and have been since day one.  I am very fortunate to have had no adverse effects.  I have occasional aches and pains or tiredness but I am 74 so it's hard to pin down if that is due to olaparib or a normal part of aging! 😁

My oncologist will only have me on for two years.  She told me that research shows the efficacy is as good after that time as it would be if continued.  I do know others that have been on it for much longer but 2 years is the standard here in BC. At this point we haven’t discussed what the treatment would be in the event of recurrence.  I am also on that Facebook page and it definitely indicates how different we all are and how different treatment protocols can be.  
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Thank you for sharing @JoanEG ... two years seems to be the standard in Ontario as well.

#Treatmentandsideeffects

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@Meinvan I'm not sure if you are checking in while you are on your travels but I do hope you are having a lovely time. Amsterdam and Paris in the spring....it sounds wonderful. Enjoy every minute!!

#Anythingbutcancer

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@Alwayslearning thank you

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Hi all...it's Sunday and I just wanted to let everyone know how much I appreciate each and every one of you. Thank you for sharing. Thank you for showing up for each other. Thank you for your raw honesty. Thank you for asking the questions. Thank you for supporting each other when it sometimes feel no one else is listening. This is such a tremendous community. 🩵

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Happy Thursday everyone. I'm betting that spring is finally revealing itself! I know we have members from coast to coast so what signs of spring are happening where you are? Hopefully snow is done now and will be a distant memory for many of the areas who were really hit hard this year by the deep freeze and snowstorms.

I was pretty excited to read the latest newsletter from OCC...there is so much going on to continue to tackle ovarian cancer. The AI-driven research project sounds amazing. I know Jessica from OCC also posted information about this on the main OVdialogue page so hopefully you saw this. I'm so thankful for OCC and all the researchers around the globe who continue to put their time and effort into tackling this disease. The Teal Warriors deserve it!! 

#Clinicaltrialsandresearch #Anythingbutcancer

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Hi @lbarr72 ... sorry for the delayed response. I was on a five day cruise out of Tampa. Had a lovely time!

I did hear that Mother Nature wasn't done with her winter wallop on everyone. She's definitely in a bad mood 😂 Hopefully the temperatures will begin to rise again and that will be the last of snow for awhile!

How exciting you are going to the Canadian Conference. You can be our OVdialogue "reporter on the ground" 😊 If you have time, please share your experience!!

Wow! I bet it feels like the two years of Olaparib flew by. I'm so glad you are feeling good however I do appreciate the feeling of apprehension. If you have the option to continue, will you? Regardless, congratulations! Please let us know what the next steps look like.

Happy spring 🌞

#Supportandencouragement

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Hi everyone! @lbarr72 mentioned the Canadian Conference on Ovarian Cancer Research in Vancouver - if you're interested in joining us to hear from expert speakers and connect with others in our community, you can find more information by clicking here. You are able to attend just the patient day on Friday, May 29th or you can choose to attend the whole conference (May 29 to June 1) including patient day. If you have any questions, please reach out to me. All the best!

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@mfallis_OCC Hi Marianne, great that there are patient-focused conference days in Canada. Are there also events for patients with ovarian cancer summarizing and translating new scientific results from the main annual conferences? I know other countries offer these sessions for their patients but have not seen this in Canada. More than just to hear about coping and supportive mechanism, I would be interested in the new ongoing research and clinical trials and newest cutting-edge drugs. Thank you.

Hi @Tanja, 

Ovarian Cancer Canada offers Speaker Series events that focus on a variety of different topics, which can include research. You can see our past recordings by clicking here. An example would be the Behind the microscope: Exploring early detection research. You can read more about this session, and watch the recording, by heading to the OVdialogue English Library or following this link: find this recording here. 

Also, on the Ovarian Cancer Canada website, we have a research showcase which serves as a comprehensive archive, highlighting pivotal studies and groundbreaking discoveries. It offers a detailed look into the vast array of research efforts aimed at understanding, diagnosing, treating, and ultimately curing ovarian cancer, documenting the progress and impact of these initiatives on the cancer community and beyond. You can find the research showcase here. 

If you have further questions, please let me know. 

All the best, Marianne

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Hello all and happy Thursday. I'm sorry I'm a bit late hopping on but I was watching my hubby in a Pickleball competition. He won 😁

How is everyone doing out there? @LeslieA how was your trip?? I'd love to hear all about it. I was on a five day Caribbean cruise out of Tampa a week ago. Definitely not as exotic as your trip!😊 We took my son, his fiancee and our granddaughter. It was a lot of fun and the weather was outstanding. It was a nice break for them from the crazy up and down cold weather in the Toronto area.

It's been a pretty active few days on this site. There are some threads that have sparked curiosity and connection. I always appreciate the willingness of others to share data, learnings from their medical teams etc. As I've said many times, knowledge is power. As we each advocate for ourselves, being armed with as much information as we can is important. I'm also thrilled to see that OVdialogue members will be 'boots on the ground' at the upcoming OCC conference in Vancouver. I can't wait to hear from @LeslieA and @lbarr72 and any others who are able to attend. It's also great to see additional connections being made with possible 'in person' meet ups. Thank you @KrazyKat for initiating that. 

For any new members, we'd love to hear from you. Everyone is at different stages of their journey's. For those who are perhaps at the beginning of their journey, connecting with others can be so helpful especially when there is often so much new to learn from those with "lived experience". For those that are further down the pathway of their journey, the focus of conversations may feel different however we'd all been at the starting line at some point. I feel that the ultimate goal is just to help each other, in any way we can.

For now, for everyone out there, give yourselves a big personal hug. 🤗 We all deserve it!!! 

#Supportandencouragement

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Thanks for sharing those photos Leslie! It looks and sounds like you had a wonderful time!

Joan

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@LeslieA how much do I LOVE these photos!! I am so glad you had such a wonderful time. Thank you for sharing.

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@LeslieA welcome back!  Wonderful pictures, you looked like you had a great time.🩵

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Hi everyone, I got back yesterday from my holiday to Amsterdam and Paris.  I must say my friend had great timing.  Our weather was beautiful and sunny most days, up to 17 when we got to Paris.  Meanwhile in Vancouver the entire time was spent in the rain and an atmospheric river with a mudslide not far from where I live.  I got to turn 54 in Amsterdam last week.  In Amsterdam we wondered the streets, toured Edam,Zaanse Schans, Volendam, and Markem for clog making, cheese making and a canal tour.  we did a walking tour around Anne Frank and Jewish history during WW2, visited the Rij museums, Albert Cuyp market, walked thru the red light district at night, and toured the Anne Frank House.  In Paris we visited Versailles, a tour on the Seine River, saw the Eiffel Tower, a Louvre tour, found a lovely gourmet market and store, and visited Montmartre area.  In Montmartre by the Sacre Coeur by the dog park I placed a teal coloured heart shaped lock for myself and for all the other ovarian cancer warriors out there.  I hope one day if my family or friends go back that my lock is still hanging there on the love lock fence for them to find.  I must say there were many moments that were emotional for me and I had to hold back my tears especially walking around a small church where you could light candles to send prayers, we were going to light one but I wasn't sure what one to do.  Then I think I found the one for the sick and got too emotional to do it.  Also placing my lock on the love fence made me cry as it had such a deep meaning to me.  Of course it's good to be home it was tiring and we couldn't go go go like we used too.

hope everyone is doing great.  I'm back to medical land next week with labs and appt with oncologist.

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So happy to hear you had a good time and the weather was nice. It's on my bucket list when I get a break from weekly chemo. 

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Hi Meinvan,

   I am so pleased to see your travel photos. It looked like a fantastic trip that was also touching and very meaningful. I hope that your visit with your oncologist goes really well! 
Leslie  

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@Meinvan wow what a lovely trip you had. Having recently been in both Amsterdam and Paris, I know weather can be uncertain at times but you definitely lucked out with your weather! What great photos and the lock...what a wonderful thought and tribute. I love the Montmartre area...it's my favourite in Paris. I have a picture I bought there many, many years ago from a local artist which hangs above our bed. If I ever return to that area, I will go looking for that lock. I was in Versailles recently too and I hope you loved it as much as I did.

It sounds like you got to see and visit so many things. I'm so glad you made the trip and had such a wonderful time with your friend. Such wonderful memories to hold on to. I hope the oncologist appointment is nothing but routine in nature.

Welcome back!

#Anythingbutcancer

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Welcome back! and thanks for sharing your stories about your travels and the Pics are amazing. Hoping all goes well with your cancer land appointments this week. 

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Thank you ladies.  So many great memories made.  First girls trip on our own without the kids.

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Hello all! I'm posting a little early today as I may be out at 1pm (ET).

I hope your Thursday is bringing a bit of sunshine (or a lot if you are lucky) and perhaps a smile to your faces. From a health perspective I'm doing ok. My repeat abdominal pain continues to come and go. I had a solid one month of no pain but it reared it's head again a few days ago. End of January CT showed no sign of cancer and the continued thought is that it's scar tissue/adhesions (per separate posts on this topic). I monitor my bowels which are doing fine and adjust my diet so I'm doing all the right stuff. It is annoying that's for sure however it is something I can live with if that's the worst the universe wants to throw at me! 🙂

We had my hubby's aunt/uncle visit us for a few days and now we are preparing for our next visitor. My hubby travelled in Australia extensively in his early 20's and met a lot of great people. He has stayed in touch with a few of them as 'pen pals' (upgraded years ago to email pals). One of them is going to be in Florida for a family event and she is coming to stay with us for a week. She/I have never met so it does feel a bit odd to have a stranger (to me), staying however it's going to be fun to meet and get to know her. We get to do some 'tourist' things as well which we don't tend to do.

Also, last night I attended the OCC Speaker Series on "Understanding Biomarkers in Ovarian Cancer". It was very good. I will do a separate post on that and look for feedback from others who also attended.

Drop a line if you are here today and/or when you get a chance. I always like to hear from folks whether new to the forum, new to posting or who've been active voices for awhile. 

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@brendalee thank you for taking the time to do that. I have a friend who had abdominal surgery (not cancer related) and she also said that massage was what was recommended to her so thank you for the reminder and the post. I have a pelvic health physio therapist so will need to engage her on this.

My friend also suggested some stretches so I've got to remember to be more consistent with those.

I really do appreciate you taking the time to do the google search. 💙

#Healthandwellness

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Hi everyone, 

Absolutely, I can share that for you @lbarr72. Congratulations for sharing your story in this way, well done!

To find the article, click here. 

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Incredible strength and inspiration 🩵🩵

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