Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
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).
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).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
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)
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@Fearless - Vol Mod. one last thing on caelxy. I reacted poorly on my first cycle of chemo last year and i did react again this time. We caught it quickly and it wasnt a problem. Stopped the drip, more drugs and then slowed it down. Hopefully you wont have any problems. I now take my mask off when they start the drug so face flushing is evident to nurses. good luck0
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@gaylestorm, sorry I missed your question about Avastin. Some days the functionality of this platform drives me crazy but understand we'll have some opportunities to fix much of it in the new year. But I digress.
As I understand it, the Avastin has some ability to boost the effect of the Caelyx or whatever primary chemo it's coupled with. But don't take me at my word. When I met with my oncologist and she went over her recommended treatment plan 90% of what she said went in one ear and out the other. I have a telephone consult with her on Tuesday so I have my list of questions; much of which comprises last week's discussion that I forgot. She's going to love me.....LOL. In the meantime, I've been googling Avastin but finding what I"m reading hard to interpret than info on other drugs so I'll lean to what my oncologist has to say on Tuesday. Happy to share with you. This time I'll take notes !0 -
@gaylestorm thanks for that tip about the mask. When I reacted to Carboplatin earlier this year it started with my palms turning red and itching and a flush going up my face so perhaps a similar indicator to look for with the Caelyx. Whatever, having had a horrible reaction to Taxel way back when and then the Carbo, I'm very attuned to raising my hand as soon as anything seems even a wee bit out of whack.0
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As 2pm comes... my oncology nurse felt that the BC patient handout (BC Cancer Drug Manual) was in a nicer format of information than what Juravinski provides. (Cancer care ontario)0
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WELL my friends, it's that time again. All three of us seem to waiting on decisions or things to take place so we'll all, hopefully, have good news to report back next week or whenever you're able to join us again. I'm always here LOL. Take care gals, and hope to see you again next week. But don't hesitate to reach out in the interim if there is anything I or we can help you with...if only an ear to listen.
Big hugs to all, for now.......
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Keep moving forward everyone1
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Hi,
Every third Thursdays is also my Hopespring ovarian cancer group, so I didn’t participate in the chat this time. But thank you for asking Fearless. I ended up going to ER Sunday where they tested my CA125 and had abdominal CT scan which came back clear. The doctor recommended that I might ask my GP for a MRI, since they can’t figure out the cause of pain I have around the liver. I also had phone visit with a psychoncologist which was very helpful with anxiety. She suggested daily meditation. All to cope and keep up the battle, as I wish you also.0 -
@Bojenka thanks for the update. Sorry to hear the pain is still plaguing you but it seems you're taking all the right steps to uncover the cause and get it resolved. Hopefully an MRI will be be helpful. Last year I had a similar issue on my right side that sent me into ER. Blood work, xrays, and a scan later no one could figure it out either. The resident kept defaulting to my lowest rib being broken and only got off that track when I finally convinced hadn't had a fall or banged myself. It wasn't until a month or so later that while in surgery to fix a hernia they discovered I was riddled with adhesions, especially in the area that been painful and the assumption was they were the cause. Needless to say by the surgery the pain in my side had totally disappeared so unless it returns we'll never know for sure. But that said, all of the adhesions I have never showed up on the CT....obviously they did in surgery....but they also appeared in a recent abdominal MRI I had for another purpose. In any event, good luck with your efforts to resolve the issue and I do hope whatever the case it's not serious and the pain resolves soon.
Big hugs for now......0 -
Hi Fearless, thank you for sharing, it puts my mind at ease. I have not heard of adhesions. Will discuss it with my GP when I meet her on Tuesday. It’s a new doctor. And it turns out I have hernia also.
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Where has October gone? THURSDAY, OCTOBER 28 and not only our last live chat for the month, we're heading into Halloween, Time Change, and the first possible hints of winter. So WELCOME everyone.
Updates:
I hear there's been great uptake in registrations for the November 5 & 6 Symposium. Remember, you can just come and go as agenda items are of interest if you're concerned about having to participate in everything. And also remember that if you wish to participate in the Skin Care and Cosmetics workshop you do have to register in advance. There are two offerings, one on late Friday afternoon (ET) and the other Saturday morning (ET). Updated agenda and link to register is in the Discussion Topic I opened on our home page.
Last of this month's Teal Teas (for those survivors of 10 years+ ) is today. The new schedule for November (23/24/25) has been released. The link to register for those is included in the Discussion topic Teal Teas on the home page. I understand these November sessions (all virtual on Zoom) will be the last for this calendar year.
Nothing more to share from my end today other than how beautiful it is looking out as the colours change so dramatically from my office window. And were it not for this session today, I'd still be upstairs bingeing Netflix. Hate to admit it but polished off Season 3 of YOU (excellent but very dark and lots of violence) and just finished the first couple of episodes of Season 5 of This Is Us (probably polish off that one tonite). So thanks for being here to make me get moving today LOL.It's now the "witching" hour of 1PM ET so if you're on line with us say hello...any thoughts or news to share. I look forward to "chatting" with you all today.....
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Good Thursday afternoon! @Fearless - Vol Mod .... you've covered "You", and "this is US" ... is there a we? me? haha been so long I've found a good series to watch so will check out You!
I just got the call I am a go ahead for 1st Avastin tomorrow. 2 weeks from now will be Caelyx and Avastin... etc. you've had yours already?0 -
Hi @ToughAsTeal Great to hear you've now got a go for the Avastin. Crazy week for me. Echocardiogram Monday, Blood work Tuesday and then right into chemo on yesterday given all the tests were fine. So got my first slow drip of the Caelyx and the Avastin back to back. Easy peasy although alot longer in the chair this time because the Caelyx was delivered in staged drips to monitor for any reactions. So far Day 2 other than my hands and feet feeling warm last night, no side effects yet. Rubbing lots of cream into my extremities and hydrating like crazy so we'll see. Next week off and then my next is just a short Avastin to complete this first cycle. So, so far so good and just hoping to see some evidence the treatment is having the desired effect, although I'm told responsiveness takes longer to see with these drugs so to be patient...ya sure LOL.
I take it you're fairing ok on the new treatment too?0 -
Hello Ladies!
After a VERY long absence, I'm popping back in. Last few months have been turbulent for me and I haven't had either the energy or inclination to engage.
Late July, cancer metastasized to my brain and following seizures I ended up in hospital for two weeks, chemo was stopped and radiation was given. In September, my oncologist determined I wasn't responding to chemo and changed me to a new chemo (caelyx). One treatment in, fingers crossed that it will be effective.
Lots of twist and turns in the journey, it's been challenging both physically and emotionally. I've picked myself up and am trying to approach it as just one more thing! Not easy but then you know that better than most.0 -
@Readersmaven
It looks like you're with us today. If so, we've missed you. How are you fairing? Love an update if you're comfortable sharing or is there anything we can help you with?0 -
@Fearless - Vol Mod I am so glad it went well for you!!! I think I recall my hands/feet same the evening of the caelyx. but that went away, and I've had bit more neuropathy this month. that seems to come and go. getting out for short walks - yes yes it's "good" but my biggest challenge remains finding that "balance" for the guts. I do believe I had partial blockage (my tumours are pressing/constricting sigmoid colon) and had very difficult few days, also with nausea caused by the constipation. I resolved to call JCC on day 3 if no improvement... wait for the call back from nurse, et la voila! some relief! so she suggested a liquid diet for few days to give my bowels a break... as of today, my bowels are screaming give me some fibre!!
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I am planning on asking dr about Avastin next week, as it seems common to receive it with caelyx. Is that correct?0
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@Readersmaven
I am so sorry to hear why you've been away from us for so long. What a terrible time you've had and we do know better than most how difficult these changes in condition can be for us both physically and emotionally. And seeing our friends go through the thick of it and not being to wave a magic wand is so frustrating. Best we can do is send our prayers and positive vibes and hope to hear you're seeing light at the end of the tunnel. Interesting though that so many of us have just recently been moved into Caelyx as a treatment. I can tell you my friend here, who is not one of our community but of my personal community, has now been on Caelyx/Avastin almost two years. Cancer is still there of course but so far no sign of further progression so she's learning to live with it rather than fixate on getting rid of it totally. Hopefully we'll all be as fortunate. But I am so glad to hear from you gal and please do reach out any time you feel like sharing, or have questions or just need to blow off steam in a community that "gets it". We are all here for you, whenever you need us.
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@Readersmaven yes I questioned same thing I saw caelyx often paired with avastin. to save you reading back through messages, I was told initially "no", and it was due to funding (I didn't meet with the ministry guidelines that pharmacist has to abide by for who can get it, or something along those lines. there was no medical reason why I could not receive it. i told my dr I felt I was worth it, and she re-submitted application for approval. I was not approved in time for my first caelyx Oct 15, but get my first avastin tomorrow... then in 2 weeks caelyx + avastin.
re echocardiogram... did you both have to get the dye injected by IV for last part of the echo?0 -
Will see what oncologist says about Avastin.
No dye injection for my echo. Nothing mentioned at all.0 -
a question I had for today, I did search through some older posts of topics.... Vit C by IV, for integrated cancer care? Anyone have information about this? I am guessing not ohip covered.0
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@ToughAsTeal do you know what guidelines are for Avastin approval?0
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@ToughAsTeal
I'm just weaning off Gabapentin which I started about three months ago to see if it would help my neuropathy. It did seem to have some mild effect so they upped me from 300 mg to 600mg. But I felt no further improvement but the increase in fatigue was terrible. Instead of cat napping in the afternoon I was putting my head down and out cold for two hours. So I told them to take me off it. Just hoping now that the Caelyx/Avastin doesn't make it worse. Like you I am trying to be more mobile.
As for the bowel, I agree that as the cancer advances we get far more sluggish with adhesions pressing on the colon. At least that's the case for me. I do find I'm better taking full 4 Senekot each night although that can produce some cramping next day. My nurse yesterday suggesting mixing it up with 2 Senekot at night and a half dose of Restolax in the morning so I might try that. Now this may sound gross but her only warning with the Restolax was that makes the stool so soft that if you feel the need to pass gas, make sure you're sitting on the toilet...otherwise you might regret it LOL.1 -
@Readersmaven no I don't know their specific guidelines. I was told it's very expensive. My guess, was that I am stage IV was a reason. hence, my comment to dr.... I know I'm stage IV, but quite frankly I believe I am worth it. please clarify, you said there is no medical reason why not approved? .... next thing I knew she was bringing me the patient fact sheet, going over the risks, giving me a vial for the protein test... and telling me we might as well get this all done now while she resubmits application. they also booked my avastin rounds, pending approval.0
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@readersmaven the Avastin is hard on on kidney function so they look primarily at your creatinine levels, and do a urine check before each looking for protein in your urine which is also an indicator of kidney function issues. That, along with the regular blood work is all I believe they look at when or if they decide it or addiing it is beneficial to your particular case.
@ToughAsTeal I've had two echos, one 7 years ago and then the other this past Monday. Both times I have had a couple of areas of my heart that didn't show up clearly. The "dye" they inject by IV is not really a dye. It's a stream of micro beads that act like a flash lite when they press the probe in the various areas of your heart to give a clearer picture. Unlike a dye it's gone immediately from your system. First time they used it. This last time the technicial could't find a vein for the IV so the cardiologist came in, looked at what they had and said it was sufficient for this purpose so to forget the extra procedure. It's not uncommon but doesn't mean they're seeing any issues.0 -
@Fearless - Vol Modmy current regime is 2 senekot at bedtime... was doing 2 restorolax daytime, morning and late afternoon..... skipped the restorolax yesterday because was liquid diet.... did a restorolax this am.... and yes, need to make sure in bathroom! lol.0
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@Readersmaven echo nurse had hard time finding vein ... and couldn't use my port. not allowed? she said if the images were good enough then we wouldn't need the IV .... towards end she speaks to other nurse to prepare it for her... darn it!.. wasn't easy for her but did find vein eventual. that is painful.0
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Going to sign off ladies, my chauffeur (husband) is waiting patiently to take me to store. After seizures, I can no longer drive....very frustrating to lose ability to just pop out, but there it is! Take care, good luck with next treatments, fingers crossed we all have success!0
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@readersmaven hope you have a good week0
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@Fearless - Vol Mod I need to sign off too..... it's just a gut feeling..... ya... signing off. lol0
