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).
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
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@jmbarrhaven i am so sorry to hear this! Is this your first reoccurrence? Is surgery possible?
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@flory It's my second reoccurrence of ovarian cancer. I also dealt with breast cancer last year. That sure didn't help. I'm seriously thinking of deferring my treatment for a few months since I don't have any problematic symptoms such as pain or bloating. I want to enjoy feeling reasonably good for a while longer. Will discuss with oncologist at my next appointment on July 9th.
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you have been through so much! I hope your next treatment will bring you the best possible outcome. I pray for all of us on this difficult journey 🩵🙏
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Love these pictures! What a great event! Is this a photo of you and your twin? Such a resemblance!
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@jmbarrhaven I’m sorry to hear you’ve had recurrence so quickly. I am in a similar situation. I completed 5 chemotherapy treatments until my oncologist realized it wasn’t working and the cancer has spread all over. There are many drugs available so here’s hoping we both find some that work effectively! 💕
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Hello beautiful Teal sisters!
Thank you for sharing your experiences here. Reading all of your stories helps me with my own journey. I’ve been struggling since I discovered chemotherapy wasn’t working for me, and I so appreciate the support I’ve received from you all. I’m going to be meeting with a new oncologist at Princess Margaret Hospital regarding a trial I may be eligible for, so fingers crossed 🤞
I. Hope you all have a fantastic weekend! Take care.
Sandra 🩵2 -
Yes it is nice to have clothes hung out on the line and I too used to tell my Mom that my jeans were stiff. So I am with you on that @melissa
@GloHo No matter what the reasoning is. I am glad to hear your eating has improved. That is a good thing. I was told that they "flag your weight" if you have lost less than X amount. So they have a formula they watch for so you can be rest assured they are "on it". Otherwise, I say eat what you want when you want. 🤗
@JoanEG What a day you had and you definitely named it correctly. I am so sorry you had to go through all of that. So frustrating and maddening at the same time. Hoping as the days have passed some of that anguish has left and you are able to continue on with your day better.
@jmbarrhaven I am saddened to hear of your recurrence. Whatever you decide to do and when is yours and yours alone to determine. Delaying treatment of any kind is also a decision and one that is often not considered at times. So good for you. If delaying won't hinder anything from a medical perspective and you can "enjoy" more, go for it. Sounds like you are out golfing and enjoying now which is awesome.
@Sandi6 I am saddened to hear of your recent developments as well. How are you doing with it all? Good to know that you will be headed to PMH to get some answers or suggestions soon as well.
@flory How are you doing these days?
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I finished chemo in January and have been on Zejula since March. My CA125 has been going up a few points every month. Will have blood test again this coming Tuesday. I hope that I am at least platinum sensitive and get 6 months or more before reoccurrence. I am still learning to live with my new reality. Praying everyday for a break through treatment for us all.
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@flory that's exactly what I am hoping for as well. To at least be considered platinum sensitive. My last chemo was middle of November. Scan end of November clear, scan in February clear. Scan almost two weeks ago I'm still waiting on results but it will be the scan that determines platinum response. May we both be platinum sensitive : )
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Clear cell ovarian cancer, had debunking surgery in March 2023, was on Avastin as a maintenance, got recurrence after five months, so platinum resistant. Caelyx after 6 cycles stopped working, Oncologists (working as a team??) not very prepared what to do next. All clinical trials are of phase 1. Stage 4 on palliative care & for Oncologists & supporting staff I’m just a number. No seriousness, no sympathy, no empathy here in Ottawa… :(
I’ve learned a lot from all comments here. Thanks a lot for sharing your experiences. I wish I get more options for my treatments
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I am so sorry to hear this. Is there another chemo you can try? Is surgery possible?
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@clearcell3 I am sorry to hear this. Like yourself I as well have the clear cell subtype. The lack of effective treatments for our type is very frightening. Did you have your tumor tested for mutations? What about immunotherapy?
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@clearcell3 I'm in Ottawa too. Can't say I've been impressed by gynoncology either. It's a revolving door, with little continuity of care and virtually no opportunity to develop a relationship with a caring health care team. I fear I'm going to have a similar discussion to yours with them on July 9th. If I don't think I'm getting a well considered response, I intend on asking for a second opinion. All roads seem to lead to the Princess Margaret Hospital for standout expertise. I will reserve that as an option.
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How is everyone today?
I got to the market but am officially pooped from it. A shell of what I was last year this time. Sad in a way
Next Thurs I am off to see a play and we will be having our CC @frogprof filling in for me. I am off to see Steel Magnolias.
The week after I plan to go to my parents in Belleville which will be a nice break from home.. Hubby will come get me on the weekend.
I have shifted from the sticky bowel issues to not being able to control what comes out in a day. What a Rollercoaster ride my body is having.
WWhat About all of you?
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Good morning @Strongwoman and everyone. It’s a beautiful day here on Vancouver Island. I just finished hanging my sheets and towels out on the clothes line and have another load in the washing machine that I will hang out when done. I got started on Olaparib on Saturday after all the screw ups. So far I have had no side effects. I had a CT scan on Friday and there is no sign of any new disease, yay! The partial bowel blockage is slightly smaller so it’s maintain the status quo with the low fibre diet. Saturday I am going to a bridal shower for my grandson’s fiancée. It is at a beautiful local winery. Wine tasting and lunch. Although I will skip the wine tasting, lol. In lieu of gifts we can purchase a bottle of wind for the tables at the wedding. This is a far cry from the tea towels I received at my bridal shower, lol. Yeah I’m that old that would be almost 55 years ago.
@Strongwoman how lovely you have some things coming up that will be fun and will give you a break from home. As for the latest on your bowel issues I can totally relate! Due to the huge amounts of magnesium that I take diarrhea is my constant companion. On the upside it keeps me cleaned out!0 -
@clearcell3 so sorry to hear that your care is not what you want it to be and feel like you have an unsupportive health team on top of it all. So disheartening and maddening. Like others have asked have you looked into any referrals to PMH? Any trials even phase I that you would try? May be worth exploring. Only you can determine that though.
@flory and @melissa I hope you get the results you want and explore options you want to see thru too.
To @jmbarrhaven I hope as time goes on you are able to think clearly to have the conversations you need to at your next appt. It is my hope for you anyways. One day at a time is all we can do
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@JoanEG You got a lot accomplished today.
The shower sounds wonderful and what a brilliant way to be able to contribute to the wedding by buying a bottle of wine for the table. Sounds like it will be fun. If you want to, enjoy a sip of wine. Why not?
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A little late to today's chat went to visit my cousin. I think today is the last day of the crazy heat wave we've had the past 3 days. Thank goodness for A/C. @JoanEG glad the olaparib hasn't caused any side effects yet, fingers crossed. Sounds like your scan results were good overall. Have fun this weekend at the bridal shower
@Strongwoman is steel magnolias a band? I thought of the movie lol but I don't think that's what you meant. Thanks for mentioning my scan.. I still have not received the results, this coming Monday will be 3 weeks. Same old self torture routine. It will be the last. Magically my anxiety has significantly gone down. I had a scary moment today, I stepped on the scale and I've gained about 3 to 4 pounds in a week. I know, I know big deal. It's just I associate weight gain with ascites.. but, the past week or so I have increased and binged a bit too much with sweet treats. So I'm pulling back lol.
I have my birthday in a few days so at this point I don't think I will call that nurse who gave me results last time until after my birthday. I don't want the day to be blue just in case
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@JoanEG that's amazing. Way back in November I did have a convo with my onc and she did say it can be arranged where I have a phone appointment 3 to 5 days after the scan, but of course I never set it up that way, and the secretaries are kinda all over the place. Last scan I was kinda told in so many words that they will call " quick" if they see something. But with the state of the healthcare system I've adopted a trust but verify attitude. I could email my onc as she's responded to my emails in the past. After my bday.. Sheesh the things I do to myself
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This is a copied message from our @babs272 it was sent to my private inbox in error and why I am reposting it here for her. Our dear friend is experiencing some difficulties and feeling quite alone. Perhaps we can all help her along with how she is feeling so that she does not feel that…..aloneness.
I hope you are still here. I am not doing so great. We have stopped chemo. Nothing has worked for a lont time. Tried radiation, chemo pills, and more.The cancer has taken over and growing fast. They say maybe -6 months but I think it will be quicker. Breathing issues are the big ones.On puffers this week and maybe oxygen soon.Still at home for awhile but checking out my other options as well, when the time comes.
Alot of emotions going on right now. Is there anyone in the same boat as me right now?I need tomvent. I feel all alone right now.
Babs27
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@babs272 Your message got stuck in my private inbox but I have reposted it here so that you can get the support of others as well.
I am sorry you are going through all this and that you feel so alone as you go through it. I am not having issues with breathing as of yet but still require my sub-cu ports daily which is disheartenening in some ways but I understand why we are doing it. I called in to speak with Oncology yesterday and see if I could get an appt to get bloodwork done and talk to the doctor and was told that my file had been dismantled. Dismantled?!? This basically means they had no hope of wanting to see me again. I am waiting patiently for someone to get back to me today. I am still taking a chemo oral drug and will need someone to prescribe it for me but if she decides she won't see me or follow through I guess I am done that when they run out. I knew it was feeling weird at the appt. Tell me my numbers doubled (for the very first time) and basically see ya later. That is what it felt like at the time. Perhaps there is nothing more to be done but I want to know and have that conversation not it be decided for me without my input. Maybe my buying time has allowed the numbers to do something. Maintained, lowered, doubled or only slightly increased but how do we know if we don't test. Funny this is the first time I have felt like a "number" at the Oncology dept.
Babs you will get through this and there are so many supports out there. Perhaps it is time for you to discuss the importance of having a SRK in your home too with your Palliative Team. That would allow you to have more time at home and less time going to the hospital, It would be worth the ask.
How is your breathing now and how are you feeling in general?
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ON a different note, I won't be hosting our Teal Thursday chat tomorrow. Our dear friend @FrogProf will be starting you off and leading you. It will be her first time as a Community Champion to do this for me, I am off to see a play at a local theatre, I am seeing Steel Magnolias and won't forget my tissues for it either, I will be back next week to lead you all off then. I am sure it will all go well and be a great chat,
So, in light of that I will say goodbye for now and catch up after I have been to the play. The family and I are headed to Collingwood for a day trip on Friday as well which will be nice to see a change of scenery for the day as well. Then I am off to my parents come Monday for the week and hubby to join on the weekend, I picked out a painting project for us both to do while I am there too, It will be fun. Mom already has my "food" ready for me….you know things like jello and applesauce etc, All my safe foods. I am sure she will be telling me when to go nap too, It will feel like I am a kid again. LOL
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@babs272 We hear you. You are certainly not alone in this journey. It is one of the few blessings of this terrible disease, the supportive community of other women going the same thing. Those of us just behind you on this journey, appreciate knowing what's ahead. By sharing what you are going through, you are giving us a valuable gift. I hope that by you knowing that we are here as a sounding board for your fears and anxieties we can help you achieve some comfort.
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@Strongwoman enjoy the play and yes you will definitely need tissues! “see” you next week.
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