Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. 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).
OVdialogue – consider joining our team in the role of Peer Support Volunteer. 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).
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
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@Rad hi how are things for you?0
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@ToughAsTeal so sorry your CA is still rising. When is your next scan? That's really the best indicator of how the treatments are working. That said, even knowing how unreliable and volatile the CA can be I still watch my own closely. No need for an interim draw. I'm doing blood work again on Monday for the Caelyx/Avastin on Wednesday. Since a consult with my oncologist always takes place in between they'll be sure to do my CA this time...and I'll be watching like a hawk anyway.0
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@ToughAsTeal - My heart goes out to you knowing the pain/fear you would be feeling daily for the physical safety and mental well being of your family. I pray they stay safe and this nightmare ends for everyone very soon.0
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Next scan April 19. Will hopefully learn results the following week.0
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@ToughAsTeal I guess all we can do is pray that war comes to an end soon somehow. I can only imagine the stress you're under with so much family there and not being able to do anything to help them.
@Rad yes, she was a strong brave woman. If you remember the discussions last year she had not expected to be with us through the fall so she held a Christmas for her entire family in the summer. And as she continued to thrive we joked about her having to go Christmas shopping all over again when it was clear she would be with us until then after all. So very glad you're continuing to do well. Another of the success stories we all love to hear about.
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Re the CA125, since mine is no longer an indicator for me, its a bit liberating, I can't get caught up in watching it anymore. It does make me a bit more in tune with how I'm feeling though and I think I can sense improvement from my treatments that way. I do get more "inside looks" though because my mets are to bone, so I will have an MRI in a couple weeks and a CT in early May.0
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Yes I agree @BeamBlossom. I pray for the end of the fighting to end as well. @ToughAsTeal I will pray for your family and Hope they stay safe.0
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I think I could print out CA125 on piece of paper then go burn it in a ceremonial fire (um, bbq). Empowering.2
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Well ladies it's time to say so long for now, one more time.
To all with upcoming scans and tests, best wishes for positive results. To those new to treatment, hang in there. You'll do just fine. It's an adjustment and one you can manage if you make sure to communicate with your care team. They're there to help make it as easy as possible for you. And continued prayers for those in the Ukraine."See" you all next week I hope.
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I see it is not past 2:00 I'm going to sign off and wish everyone well for the upcoming week. I think about Gaylestorm and I feel blessed to have the opportunity to watch another spring unfold, it really is a joyous time of year.1
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Ok Bye everyone hope your week is a good safe one..1
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All the best to everyone in treatment, stay positive and a great weekend to all.1
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Get outside. Keep moving forward. Wishing everyone a great week.2
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So sorry to hear of Gaystorm’s passing. I’ve been thinking of her and hoping she was well. I agree with all the comments about her, she was a wonderful human being, artist and supportive teal sister. She will be dearly missed by so many.1
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APRIL 7 AND TIME FOR ANOTHER WEEKLY LIVE ONLINE CHAT....OUR TEAL THURSDAY FOR THE OVDIALOGUE COMMUNITY. WELCOME!
Upcoming:
Look to the OCC site https:/ovariancanada.org under local events for the next speaker series offering and the Teal Teas for this month. I think I noted when I looked quickly that the time has been moved for the Teal Teas this month so pay attention to that if you're planning to register for any of them. All, including the Speaker Series sessions do require preregistration.
Thanks:
To those who added comments about their access to care experiences either her under the Discussion topic I had opened or sent directly to Cailey Crawford at OCC. Your voice does matter and is enormously helpful to OCC when advocating for improvements that directly affect us.
Thanks also:
To those members who take a moment to reach out to someone who is clearly struggling, as most of us do so often, and just offer a word or two of encouragement or just to let them know we hear them and they're not alone. A little inspiration for those who don't think they have anything they can offer - "Sometimes we simply need someone to be there. Not to fix anything, or to do anything in particular, but just to let us feel that we are cared for and supported".Well ladies, lots of us in treatment, tests going on, and the very fortunate to be out of treatment and in recovery and hopefully still doing well. Wazzzz Up? Say hello and let us know how you're doing or what we can help with or, better yet, what we can celebrate with you......over to you
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Well gals, 15 minutes in and no one appears to want to chat today. I had chemo yesterday and on a Dexamethasone high right now so have lots to do before I 'crash' LOL. Will stay on a few minutes longer in case anyone joins though.0
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Just a quick hello! Had my treatment canceled last week because I had food poisoning or a flu bug. Not Covid. Felt like $1M last week. Had treatment this week all good. Busy couple of weeks ahead between work and family! Hope everyone is doing well.0
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Hi just sitting in waiting room waiting for avastin treatment0
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Hi @Taita Glad everything back on track. Geez I just hate having a treatment delayed but I understand the way they map them out they account for those possibilities so effects are impacted. I've heard of a few folks the past week with flu or food poisoning type symptoms....my husband included who blames his three day ordeal on chinese food. Wonder if there is some flu bug (non-Covid related) going around right now. Thankfully I've managed to avoid it.
Am having trouble keeping my hydration up again. Geez. I really think people can hear the sloshing in my belly for all the fluids I'm intaking so no idea what I must be doing wrong. Thankfully it was slightly better this last blood work so it didn't interfere with my treatment yesterday but I am sooooo sick of water!0 -
@ToughAsTeal
Forgot it's your Avastin dose today. Glad you're able to connect with us and fill in some time. I was in and out in record time yesterday for my Caelyx and Avastin. Got there 15 minutes early and they took me in right away. Everything was premixed and ready for me. In at 1:15 and expected to be there until 4:30 but out just before 3:30. My lucky day! Oh, and my CA down another 400 points this time so the treatment seems to still be working if you go by the downward trend. No scan for another month or so though and that will really tell.1 -
@Fearless - Vol Mod apparently there is a flu bug going around in Kingston area and that’s where we were. 3 of the four of us got it. Wasn’t fun but was over fairly quickly. They did my CA 125 that day and it went up 35%. Eek! 72-98. Re did it this week and 93. CT in a couple of weeks to see if there is anything going on. 🤞. Need to keep on this treatment till Italy trip the end of June. 🤞🤞0
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@Fearless - Vol Mod me too re fluids. I really dont feel like taking anything in. Appetite has been non exisitent pretty much. Nausea every night. On a positive... my blood pressure is 128/73. And I managed to do a decent walk a few days ago when my daughter surprised us with a few days visit from university.1
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Hi Everyone,
From my earlier post - diagnosed stage 4 OVC in December with a pleural effusion, four rounds of chemo and
I had my debulking surgery on March 22. Total hysterectomy, omentum, appendix, some lower bowel resection that did not require stoma and they were able to remove some from my liver, bladder and I think diaphragm. I still don't know all of the terminology for this but they were able to 'feel' for it and take it off without impacting any organs. At least 3 new chemo treatments are planned starting next week. I will have my post op appointment on Monday where I hope to find out what they learned from the pathology, latest CA 125 and genetics testing. Docs who saw me in the hospital were quite pleased with the results and say they were able to remove everything they could 'see'. But of course there is still a long road ahead for me so I am managing expectations.
I am still pretty sore, experience daily bleeding and my bowels are not happy. Painful diarrhea I"m not clear if the pain is coming from my vagina, bladder or bowel or all three. Staples out this week. Not walking as much as I had hoped due to discomfort but wondering if all of this seems about average. I expect it is but would love to hear about others experience.
Also does 3 weeks seem a bit fast to start chemo again? I would love to get started but the side effects mirror those I am having post surgery and wonder if I could use another week to recover. thanks,0 -
@Fearless - Vol Mod forgot to mention I was having trouble with my hydration as well. I got some advice that if I add a very very small pinch of salt to my water it will help your body absorb it. I am doing it and so far so good. I figured can’t hurt!1 -
@Taita that answers it for my husband. As you know we live west of Kingston. The chinese food was take out, from Kingston and Wayne drove in to get it...and pick up a bottle of vodka for a martini (not for me, sniff sniff, though). He must have picked it up in that trip in to town.
Oh gosh I do hope the CA is not indicator of anything that might preclude continuing that treatment. Thankfully being off trial rules (which usually bump you off for a change of 10% or more) it should just end up in your oncologist's hands to decide. And while the trending is up, they're not huge jumps in value. My own oncologist only gives me the shocked look when it's doubling each couple of weeks. Otjerwise she puts it off to other possibilities impacting the score and waits it out for a scan to tell if it is cancer related. That CA is so unreliable but it's all we have to tip us off.
June doesn't seem like far off but in the world of our treatments it seems like eons to get through doesn't it. Keeping my fingers crossed for you. Do let me know.1 -
@mjmck21 hi😀 off top of my head i was 4 weeks post surgery chemo.1
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Hi #ToughAsTeal thank you. That is what I was reading is the norm but I was scheduled in a week earlier.0
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@mjmck21 welcome back and so glad to hear your surgery was so successful. Gosh, I can remember the relief when my surgeon told me they removed all visible matter. Of course the next round of chemo is to try to ensure anything that might have been hidden and any cancer cells that are dormant get dealt with. But yes, 3 weeks after surgery to go back into chemo is the usual. That said, I do hope you've let your surgeon or oncologist or his team know about your surgery after effects. We all respond to the surgery differently so your after effects could be quite normal for you. Also with the diarrhea have a look at your diet. Could be too much or too little fibre. Those levels really effect us. Recovery for me was piece of cake other than some constipation for me....yes, I got lucky.1
