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!
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
Comments
-
@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🤞.
Thinking of you.0 -
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.
2 -
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.
1 -
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.
0 -
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.
2 -
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!
0 -
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!
1 -
@Sandi6 sending you lots and lots of positive thoughts. You tell that Keytruda to get a move on!!!!!
0 -
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.
2 -
@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. ❤️
0 -
@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?
0 -
@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.
0
