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@Sandi6 Hi! Nice to hear your fatigue is lifting and you’re able to get some decorating done. You are doing amazing. You are so strong and resilient…rolling with all the punches you’ve had to contend with. Are your anti-nausea meds not working? Maybe need to change the prescription? Hmmm…diarrhea. As awful as it is, I’d rather have it coming out than have to worry about constipation and blockages. Have you been losing weight because of these side effects or have you been able to maintain your weight with diet and supplements?
Good luck with treatment #3. I hope your side effects will start to lessen as your body gets used to Keytruda. Back to PMH right before Xmas! Sounds like you are taking it in stride and will be well-prepared for the holidays!
I guess your CT results will be discussed at your pre-trial clinic on Tuesday? You have only had two treatments…so not likely to show effects of immunotherapy yet but you never know for sure…everyone is different🤞.
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Hi. With some tweaks to my pre-meds and my neutrophil count just squeaking by…I was able to have treatment.
Well it seems like I’m in a good news-bad news situation!!
The good news is that my CA125 went down another 4000 - that’s a 75% decrease after 3 treatments!!
The bad news is that I had another reaction to Carbo. Caught it earlier this time because I wasn’t under the influence of Benadryl…so only some nausea and face flushing. The alternate will be Cisplatin.
I am going for allergy testing. It’s for Carbo, although I think that is a forgone conclusion now, but it will be able to show the level of sensitivity. They are also going to test Cisplatin which is the alternate for Carbo. So, hoping Cisplatin is ok!
My nurse was amazed that I was able to self-advocate successfully for the change from Benadryl to a 2nd generation antihistamine - he said Drs rarely agree to the change 😁.
I have a CT scan in a couple of weeks so I’ll see how it compares to my CA125 decreases🤞.
It feels good going into the holiday season with lifted spirits.
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My CT scan results are in, and it’s not what I was hoping for, but time will tell following further treatment. All of my lymph nodes that are cancerous have grown. So far nothing has stopped them. I’m praying for positive healing ❤️🩹 soon. I still believe that the Keytruda is going to work, so I’m going to be patient.
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hi @GloHo right now my bloodwork is done every 4-5 weeks. My red and white cells haven’t hit normal yet but they are in acceptable levels so that’s good. My last CA 125 was 21. My average is 18 and although it went from 13 to 21 from last bloodwork none of my medical team were worried at all. I of course was completely freaked out however they were all very calm. I’m hoping it will stay the same or decrease in Dec 🤞
No date set yet for wedding. Lots of discussions to be had. It’s the positive momentum I needed as we head towards 2025.
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Hello to everyone! I had an appt with my oncologist a few weeks ago, and my CA125 is holding steady at 11. The rest of my bloodwork was good and the pelvic exam was normal. Nevertheless I was feeling a bit crampy off and on, and was experiencing bloating in my lower abdomen—I took Restoralax for a few days and that helped. It makes me a bit worried at times, but there’s no sense in stressing. I continue to ride my “safe” horse, and wrestle to pull up support underwear for my abdomen. That’s a task and half!! Last Sunday I managed to canter (slower gallop) across a field, even stayed on when some ruffed grouse flew out of the underbrush and my horse leapt forward. Geez, this getting old business is cramping my style. I was so sore and stiff afterwards!!! But the aches and pains are worth it because I don’t know what my future holds. If I feel anxious, usually bedtime, I take .5mg of Clonazepam and it helps me calm down. — Carp diem, ladies! Sending love and peaceful thoughts to all.
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Hi @GloHo … great news on the drop in #'s for the CA-125. What a huge decrease after 3 treatments. Nothing better than positive momentum. Sadly, sorry to hear about your Carbo reaction. It's so common (I'm told) however that doesn't make it feel any better when it happens. Did they say how they would administer the Cisplatin if that's a 'go'? I was originally supposed to have Cisplatin/Pac however my intraperitoneal ports (IP) failed (twice) before they were able to administer (my body rejected the catheters). So I'm curious.
My fingers are crossed for your CT results!
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Hi @HorseGirl …love the pics!! So thrilled to hear that your numbers and bloodwork are normal. That's fantastic. I will admit that I have on and off again abdominal pain and I describe it as 'crampy' as well. My brain always goes to the worst thoughts and then I pull myself back up again so I encourage you to stay in the positive too. Your numbers are telling the true story so lean into those. I take Senokot-S every night. It has worked for me to keep me regular and I've spoken to my medical team and they say to just keep using it (the old adage if it ain't broke don't fix it). Sending positive thoughts back 'atcha!
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@Sandi6 sending you lots and lots of positive thoughts. You tell that Keytruda to get a move on!!!!!
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Hello Ladies!
I am back from Punta Cana! I had a wonderful time. My biggest issues were a couple of days of the runs, tired legs and sunburn on my lips despite lots of sun block. I also had red swollen feet most nights. I did take Zippy my scooter and that turned out very well - I used it in the evenings when I was tired. I floated around in warm pools and in the warm ocean with the kids and grandkids and we made wonderful memories. I felt SO GOOD while on holiday (first in many years) and I felt not at all like a patient. What a lovely change. I had a fit-to-fly letter from my oncologist but nobody asked to see it. Travel was tiring but it was worth it in every way. Here are a couple of pics. I am wearing a wig as my hair is still very short and fluffy. I am waiting for a CT Scan result but doc said his quick peak showed that I'm stable. Still going 3 x each month for Taxol and Avastin.
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@BellaDonna1959 look at you go! Embracing each day and making memories at the same time is an incredible gift. I have a greater appreciation for my life more than ever, and can see that in you too. I can tell from your pictures that you have so much love and support. ❤️
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@Sandi6 I’m sorry to hear that your CT results didn’t reveal better news. How are you feeling overall? Still diarrhea and vomiting? I hope that has subsided for you. Hoping that the doctors can help prescribe some anti-nausea meds to sort that out. Are these the side effects of the Keytruda? How is your mobility?
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@BellaDonna1959 what amazing pictures. You have such a lovely family. I'm so glad you had an opportunity to get away. It does so much for the soul sometimes. I hope your CT results will come in with positive results. Fingers crossed.
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Just catching up…
I was supposed to have my allergy test on Tuesday but they had me as a new patient consult and didn’t order the meds!😵💫 I am back in TO next week for my CT and was able to tack on the allergy testing while I’m there. They will be testing both Carboplatin and Cisplatin. Carboplatin may not be totally off the table yet and we’ll have to see if I have a reaction to Cisplatin. I just want to keep this positive momentum going!! I only have two infusions left in the trial so that will be taken into consideration when we discuss the move forward. Because of my reactions, I only got 2/3 dose of Carbo on the first reaction and only half dose at the second when the infusions were stopped. As far as I know, they will use my chest port for infusion.
Has anyone had a reaction and then rechallenged the chemo immediately after you were stabilized? That was an option for me at my last infusion but I opted not to rechallenge immediately.
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Hello everyone and happy Thursday,
I'm not going to be able to join at 1pm today as I'm taking my parents to the doctors. Both of them have bronchitis so off to the doctor for a follow-up visit and check up for them both. They are both 87 so anything like this makes me very nervous.
How is everyone doing? I've been having a lot of lower abdominal pain. I'm four months into taking Lynparza and it's one of the side effects apparently (45% of people experience it in some form). My next meeting with my oncologist is Dec 19th so I'll mention it again however it's been a side effect since day one. It is however, a bit more pervasive now vs previously. I did have my CA-125 done this week and it was 17 so that helped reduce some anxiety on my behalf (because we all know ab pain can mean so many things).
We are looking forward to Christmas in a few weeks. My granddaughter is 22 months so it will be a very fun Christmas with her.
I hope everyone is doing well out there. I'll check back in later today to see how everyone is doing.
Be well.
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Hello ladies! It’s the Eve of New Year’s Eve, and things have been quiet in this group for a few weeks. Checking in to see how everyone is feeling and what’s going on in your lives. As for me, I made it through Christmas in one piece—cooked a 21lb turkey for a family luncheon at my house. Prepped the food and cooked the turkey a day in advance. Was happy to be able to use my Gibson Christmas dishes. I don’t take anything for granted in this life anymore. When I think about Christmas of 2023, I remember being too tired to attend gatherings. This year was a gift. I send my warmest regards to all of you as the new year approaches. My heart goes out to each and every one of you, and I hope to hear from you soon. 🎄🦌🛷🎁(Pictures of my “fancy” dishes and one of many holiday planters I made beside the barn.)
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Lovely decor Horsegirl!
I am currently stable - biggest issues are numbness in fingers and toes and fatigue. Still in treatment with Avastin and Taxol. I feel like a winner today because they gave me a few months and it will be 3 years in February. I will never give up fighting for my life and a lot of the good things that came my way were of my own insistence - we are our best advocates for sure in this fight. My New Years wish for myself and everyone is peace, love, health, wealth (enough) and happiness and for all us gals a determination to kick this cancer to the curb with New Years bells on! Happy New Year!
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Sending greetings to everyone! I was happy to not be in treatment this Christmas. I pray 2025 will bring us all good luck and good health in our battle with this disease. Xo
@BellaDonna1959 ypu are an inspiration! I hope I can kick butt and keep fighting like you!
@HorseGirl beautiful decor and table!! Love it!
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Happy New Years greetings everyone. I hope 2025 brings greater advances in fighting this horrible disease, that we can all benefit from. You all remain inspirations to me. Keep fighting the fight Teal Sisters. Thanks for all your support.
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Good afternoon sisters. Wishing you all a Happy New Year. May 2025 bring you peace, love and happiness.
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Wishing you all a beautiful, healthy, joyful year ahead ✨🤗🙏🥰💕
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My husband and I drove for 8 hours to get my treatment yesterday, on NYE, them came home, got dolled up and had a fabulous time celebrating 🥳
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Hello ladies
Wishing you all a wonderful 2025
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@Sandi6 you go girl! Love the picture!! 🥳 @BellaDonna1959 I’m glad to hear that you are stable! I totally understand the feeling of fatigue, and am most productive in the mornings. @JoanEG and @Alwayslearning it’s so nice to have this group to offer support to each other. We made it through the holidays! This time last year I was very tired after 6 rounds of chemo, feeling better this year (and grateful). @flory thanks for the compliments on my holiday decor—it was nice to have the strength to make my own planters and put on a holiday meal. @melissa How are you feeling these days?
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@HorseGirl I just got home from having bloodwork and a CT scan. Hoping for good news. I am feeling so good these days that I am fearful that it could come crashing down around me at anytime. I will feel better once I have my results.
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@JoanEG I too know that feeling. Even when you feel good, it seems like there’s a little cloud following you around waiting to rain on your parade. I am still tired, and learning to live with it. Finished Bevacizumab in July 2024, and my CT scan in September was NED. I go for bloodwork on January 14th and an in-person appt with oncologist. Every twinge and cramp is worrisome, but I do my best to ignore it. I try to take each day as it comes and live in the moment. Has anyone heard from @Strongwoman? I’ve been thinking about her, and wondering what’s happening.
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