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).
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Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
@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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@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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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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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. 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.
Re: Patient input needed by December 5th to help bring ELAHERE to Canada
@mfallis she never took the drug as it wasn’t available to her. I can certainly speak on the struggle to access it.
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@JoanEG Thanks for clarifying. I totally understand the distant memory sentiment!🤣
@Alwayslearning Yes, I’m at PMH. Thanks for the advice re asking for a bed. I actually prefer a chair and I didn’t want to tie up a chemo space just so I can sleep off the Benadryl after my infusion 🤣. I may have to reconsider depending on my move forward - so good to know.
I’m in chemo for 4-5 hours now…so what’s a couple more hours if needed!!
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@Alwayslearning 6 to 8 hours for me also. I didn’t mind as the chair was comfy recliner, I always had my iPad and a book and the nurses kept me well supplied with snacks and drinks 😊.
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Good afternoon sisters! @Strongwoman I’m so sorry you have had so many things to deal with lately! I have to admit I was worried about you! I hope things work out for you in the housing department and as for putting up your tree if it brings you joy then do it! I never decorate until December. I’m a bit of a minimalist and my house always seems cluttered when I decorate for Christmas, lol.
@Sandi6 sending you positive vibes for good results on your CT scan.
@GloHo that Benadryl knocking you out like that sounds a little bit scary! I had a very bad reaction to the carbo so they had me taking 30 mg of Dexmethasone 12 hours prior to chemo, another 30 mg 6 hours prior then they would give me an IV dose when I was in the chair as well as Benadryl and some other thing in a syringe with a red label prior to starting the carbo. They also started the infusion as a very slow rate then gradually increased it every 15 minutes until it was a full flow. It meant a very long day in the chemo chair! I think it is a good idea to have someone pick you up after your treatment and I hope your oncologist is aware of the sensitivity issue!
As for me I’m feeling really good. My blood work is good and my CA125 is staying at 7. I have had no side effects from the Olaparib and I am almost back to my goal weight! I have been gaining the weight back steadily over the past 3 months so I’m feeling very happy with how things are going right now.
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Hubby and the boys went to Detroit for a football game last weekend. So I decided my son’s girlfriend and I deserved a nice lunch. I took her to Pinecroft - a restaurant, pottery gallery and studio. I love the atmosphere of this restaurant - literally in the middle of the woods - very quaint.