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).
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@Fearless_Moderator @ToughAsTeal
Well ladies, I think I am going to tap out early. The fatigue is hitting now and I have been up since 4am. I am going to go put something mindless on the TV and will probably fall asleep.
Chat to you all next week!1 -
I will be up-ed to 6mg hydromorhone continntwice a day, and use the 2mg as filler if needed0
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Don't know your hubby @Strongwoman but I can imagine the poor guy struggling with that weighty instrument and praying his friends didn't see him. Yet today, as adults, we'd all admire him had he mastered it.0
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I desparately wanted to be a fiddle player like my dad.... but ended up on cello. I dreamed of running away to join ELO. No other "cool" cello parts until Jaws theme?0
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Me too. Bladder is calling my name. Sorry i was in such a bad funk last few weeks. So glad i have here to come back to❤️❤️0
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Welcome @hope2022 I would assume there would be a risk of different readings coming out of different facilities. Staff could be using different procedures, different equipment but if the difference was dramatic they'd go in an investigate. I can't imagine anything more than a point or two.
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Ladies, it's after 2 and time to go for the week. Thanks all for joining us today.
To all Birthday babies, past or upcoming I wish you a happy birthday and many more to come.
And @ToughAsTeal no apologies for behavior allowed here. We are free to rant rave, cry, scream or better yet laugh ourselves silly on this site.
Hopefully see you all next week.....0 -
@Fearless_Moderator
I agree, it can't make much of a difference. Thank you for your reply.
I hope you are doing ok, I know your journey isn't an easy one. I'm sorry that I haven't logged in too much lately to see how everyone is doing.0 -
Hello @hope2022 - in regards to CA125 results at different labs - yes, this is true that they can be significantly different. My oncologist told me that we should not be comparing results taken at different labs as the difference could be significant. Then, I had to take CA 125 at two different locations in a span of 1 week and the results were so different, although all following tests taken at my “home” hospital were consistent with the previous results taken there. I hope it helps somewhat.0
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@Keepcalmandbreath
Thank you for your comment. My oncologist said something similar. She mentioned they can be harder to interpret when not done at the same lab. I was a little disappointed last week when my ca 125 increased slightly after first carboplatin treatment. This is the 3rd time getting carbo, so not sure if it's going to be effective this time. Just had a 2nd treatment this week and will have a CT scan Dec 6th. Like a lot of us on this journey, it's a wait and see situation.0 -
Hello @hope2022 - my oncologist mentioned that after a 3rd round of chemo (including carboplatin) an increase in CA125 is expected - it has to do with amount of dead cancer cell in the blood, or something like that.. I always interpreted it as the treatment has been working. Don’t get discouraged!0
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@Strongwoman
It's a little hard to understand, but I'll just have to wait and see what next results are.
That's great news regarding your scan. I'm sorry to hear about your bowel issues. I know they can be so painful.0 -
Happy Thursday 24th.. I won’t be joining in at 1. Family from Vermont and Illinois choosing to spend their Thanksgiving weekend with us! Very happy and they know I need it low key.Have been mapped for pelvic radiation but still no start date. Hugs to you all
Laura0 -
HAPPY THURSDAY NOVEMBER 24 AND WELCOME TO TODAY'S 1pm ET LIVE ONLINE CHAT !
Happy? said someone. How could you be happy when you have OVC? Well, a little more than a week out of radiation for one spot they suspected was causing my hip and mobility issues in my right leg. The radiation was once a day for 5 days and so easy I couldn't believe it. In and out each time in 10 minutes. No immediate side effects but they did warm they tend to hit, if there are any, after completion and up to 2 or 3 weeks. Well the spot they radiated did get painful earlier this week but only lasted a day. The diarrhea around the same time and lasted about 3 days. Otherwise, nothing to speak of so far other than I'm starting to find some relief.
And now on to my new chemo regime which is a 30 minute dose of Gemcitabine once a week for 3 weeks and then a week off. I' ve been on off chemo for so long now (6 years but who's counting) that I forgot to ask how many cycles....so I'm assuming 6 to 9. A question for my next check up end of December. I've had this drug before and tolerate it well so I don't expect any effects other than a feeling of joy that it's now pumping through my system and attacking what it's supposed to attack. So this should give me at least another 3 to 6 month reprieve while the chemo does it's thing. This is what living with the disease is. It's not the life you had planned, but for me, it's still a good life. I'm looking forward to my son arriving for the holidays on the 21st, Christmas day, my stepson and pregnant wife here on the 27th, lots of binging my favorite foods and creating a whole new set of memories for all, And right now watching my pup gamboling down to the lake with one of his brothers who's come to visit for the day. So that's why I'm happy. I could decide to be miserable but what a waste of time that is. We all have the power within us to be either. This site helps my choice to be happy.....here I can learn, share, commiserate, fill my heart and even laugh any time the need strikes me. I hope you can find the same.Now to get on with our afternoon. Thanks for joining us today. Please say hello and tell us what's on your mind today?
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Just heard from 2 of our stalwart regulars each week, Strongwoman and ToughAsTeal, that they can't make it. Both for great reasons though.....Strongwoman is meeting up for an afternoon with family and ToughAsTeal preparing for some US visitors who've decided to spend their Thanksgiving with her this year. They'll both be missed this week but always wonderful to hear about people's activities.0
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Happy Thursday. Thank you for the update @Fearless_Moderator just what I needed to hear!! Fatigue yesterday afternoon and this morning but perking up now. My Dr pulled my Avastin to see if we can stop the infections I seem to be getting so we will see. See Dr tomorrow and I am sure we will be discussing my creeping CA125. Crazy how the treatments are holding the tumours but she she thinks the CA125 rise is from growth in the peritoneal lining which the CT can’t see. So we will see what’s what! Looking forward to a nice weekend!0
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Hi @Taita so good to hear from you. You and I may be in somewhat similar situations. You're right, the CT's don't pick up growth in the peritoneal lining accurately. From mine they can pick up any nodules that are on the larger side and shows of growths that are grouped together so they measure the size of those strips not individual cells. My medical oncologist tends to defer to the CT to measure my progress or otherwise but she does factor in my CA as well. As she says, after 6 years of every kind of chemo they could throw at me what she can say is that, for me, the CA is usually pretty accurate on progression or reduction of presence. But she does agree with me that score generally does not relate to size. So a year ago when I jumped from 34 to over 7000 in 3 months you'd think there would be tumors the size of grapefruits, there were no new tumors visible and the ones they track had only grown by less than a centimeter and were still in the millimeter range. At this point I know I"ll never be rid of the cancer and test scores waiver so much I don't really worry about them anymore. I tend to go by how I feel and so far other than side effects from chemo that come and go I still feel pretty darn good. PS: A lot better now that I'm off Avastin over a month.1
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@Taita I see it's just you and me today so thanks for dropping by and your update. i do hope the Avastin was the cause of the infections and you can now course correct on your treatment plan. Yes, we are expecting a wonderful weekend here in SE Ontario and hopefully something similar elsewhere. In fact it's started already so my husband is up there cleaning out the eves, the curse of property with a couple of mini orchards and lots of other trees. And as I said to him....Saturday should be a perfect day to put up the outside lights and perhaps get our tree.
You have a great weekend for sure and to anyone just viewing the site the same to you. Hope to see you again next week.
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Hi all. I did treatment 5 from first recurrence (or number 11 if you count from beginning of all this in 2020) on Monday so missed yesterday. 3 nodes in chest that they are watching, and CT shows stable during chemo process plus CA going down - dr calls it "mixed result" so she is sending me to consult with radiologist in next few weeks. Anyone with only chest/clavicle node radiation experience I would love to hear from0
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@Bobby
Since the chat on this thread may not be read by everyone right now. Perhaps posting your question at the end in a new chat discussion will help and you may get some answers there.1 -
IT'S COMING ON TO 1PM ET SO WELCOME TO OUR WEEKLY LIVE ONLINE CHAT. THIS IS YOUR OPPORTUNITY TO CONNECT WITH SOME OF OUR MEMBERS REAL-TIME.
How is everyone today? We've had lots of new OVd members this past week so hopefully some of them have chosen to join us today, along with longer-term members who join regularly.
I am your host for these, a 6 year survivor on her fourth recurrence and currently back in chemo once again. But learning to live well in spite of recurrent cancer. Life is just different for me than I had envisioned it, but still good. I wish the same for you.
A word of wisdom I discovered last night following my infusion of Gemcitabine. We cover up our anxieties far too well. Had a nice dinner, talked about how easy the Gem is now that it can be done by port, went to bed and immediately started hyperventilating. I spent over two hours trying to stabilizing my breathing and was about ready to go to emerg when I realized this might be an anxiety attack. Thankfully I had some Lorazapan and took two and then spent some time just meditating to take my mind off my breathing difficulties and within an hour it was over and fine today. So here we are today.,,,,,,talking about our issues, not just offering insight to others but also as a way of release of the emotions most of us hold tight. Always remember, this is a safe space for all of you. We aren't judgemental, we are objective and we often know when help is needed or when just a 'virtual hug" will suffice.Well let's open up the chat for today. Who 's out there? Say hi and let us know what's on your mind or how we can help. First-time here.....a local weather report is always easy to break the ice....we talk about anything and everything in this circle of love. So let's get started.......
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Hey @Strongwoman is see you've popped into the live chat. How are you this week? How was the visit last week. Did you get that picture you were hoping for?0
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Hi this is my first time on this site and first time on the chat line. I know exactly what you feel when you talk about anxiety. I’ve been having a lot of panic attacks and have found that taking a long bath helps0
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I am still transferring my eliquis Prescription to warfarin and my INR is up to 1.6 and I need to be at 2 before I can take zejula, which is where my anxiety is kicking in because to me it’s a long wait in between the last round of chemo(aug 26) and starting zejula0
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@grandma welcome. i"m so glad you chose to join us today and hope you find this chat room useful. It's become a great place to let off some steam or get advice in a real-time basis. Yes, those anxiety attacks are awful. But I agree, anything you can do....mediate, long soothing bath....to make your mind shift to a calming focus sure does help. Glad go hear the baths work for you. I's one thing I miss. I'm having some issues with mobility in my left leg so can't soak as getting out of the tub is too much a challenge right now. Hopefully the radiation I finished last week will work it's magic.0
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I hope I’m doing this on line chat properly0
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I am curious, when you speak of being on chemo once again. Did you have a pic line removed and put back in or did the pic line remain in?0
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Well good afternoon ladies! That wind is a cold one out there. I am sitting here with a cup of tea and have got my groceries finished.
Welcome to anyone new joining the group today!
I will warn ahead that this is a topic some don't want to think about nor talk about but it has to be put out there as I doubt I am the ONLY one that feels any of this.
I have been on my trial drug, Trametinib, in combination with Letrozole for 2 weeks now. I have a telephone call with the Med Onc that is heading this late this afternoon and can say that unless he comes up with something pretty miraculous for me that I will be going off the trial drug. For those that haven't been following me, I am steering my own ship and making my decisions as to how I want to carry out to the very end. It was my choice to go on the trial and information I had found and presented to the Med Onc. I have been struggling with this decision for days now but am pretty firm about it now. Being on it makes you feel that you are in chemo every single day and I am not exaggerating on that. The fatigue is incredible, peripheral neuropathy has returned, mild headache daily, muscle/joint soreness daily, low grade fever daily and the rash that they talk about is beyond words. I have been on an antibiotic for a week now and the rash is continuing to spread, makes my face feel like it is sunburnt, it bleeds, flakes and new eruptions occur daily and my scalp hurts which either means the rash is going there or my hair will fall out soon. Due to the antibiotics, I have diarrhea nightly and feel like I 'rent' food. I then take Pepto Bismol to counteract that. So when does it all stop? All of this makes me feel like hiding in my home which I don't want to do and don't want to continue to live like. I don't want any memories of this being what I am like should things not work out and then things deteriorate further. I want to "be" more to my family than what I currently am. I found this passage in a book entitled Die Wise and it goes like this:
"This is what I mean by courage. It takes a towering courage in the face of everything that passes for love and compassion and mental health to 'stop trying'. It takes more courage still, or maybe a different, more discerning kind, to stop before someone is addled by symptoms and drugs and side effects and cold sweats and twenty two hours a day in bed and night terrors about what is to become of him or her."
And with that I will say it does take Courage. These decisions don't come lightly, no family member truly knows what we each go through and how it makes us feel. A lot of us are very good at "covering" that up while we sometimes suffer in silence or mute down the symptoms we are feeling. None of us want to be viewed as "giving up" but what is that really? Who makes that decision? Someone from the outside looking in? When you have what is referred to as
"quality time" left what does that look like? What is it you want to do, how you want to spend it and the memories or legacies you want left. I, personally, feel "left out" and "robbed" of certain things and I believe it is 'normal' to feel that way with this disease. It can limit what we would like to do based on what we all are living with on a daily basis. So, while I can, I would like to enjoy that glass of wine (should I choose to have one) or a celebrate something or see something because I can and not because treatment is limiting me. I have a 30 year marriage to celebrate next week and want to feel good about doing something. Currently, I am not depressed but am disinterested in doing anything for Christmas. This is NOT me, Christmas is my FAV time of year. I want to get back to the activities I was doing prior to this drug and be interested in things again. My story isn't done yet, I am just rewriting a part of it for now.2 -
Yes it seems you are. Sometimes you need to refresh to see the latest comments. Just go up to the top, click on Discussions and then reenter the chat to see the latest comments or go to the notification button beside your name on the upper right and click on it and new chats it's listed there. Unfortunatley this platform was not built for live chat so it can be awkward until you get used to it. We're working on fixing that functionality0
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