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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@Tinazzie I'm sure your health team wouldn't see you as a hypochondriac. It's really quite normal not to feel 100% in the first year and into the second. It's often the combination of lingering side effects and your body tries to restore itself, and the anxiety we all share about recurrence. You are so resilient gal. Hang in and don't fret until there's something to fret about is my motto.2
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@Fearless - Vol Mod, when is your current treatment scheduled to end?0
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@Fearless - Vol Mod. The “baby” is our 18 month old youngest grandchild. We have 3 in their 20’s. Lol! Both our daughters and their spouses and baby Amira are on the trip. The adults were all riding Vespas for the day and My husband and I took Amira in back of the the “Tuck Tuck” with the driver/guide in front.@Tinazzie I must say I had never been out to the countryside here and the scenery is stunning!1
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@tinazzie, never is the hope but not likely. At some point the treatment will lose it's efficacy or my body will start rejecting it. My oncologist tells me this is the optimum mixture for someone who's become platinum resistent and she'll keep me on it as long as it's at least keeping me stable or clearly showing a major slow down in progression and I can tolerate the drugs. She has had patients on it long term...that being a few years so that's what we're hoping for unless some miracle trial or treatment arises that's a better bet.2
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Have to run along, and hope to catch up again soon. Have a great week all!2
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@Fearless - Vol Mod So glad you are tolerating the drugs better now. We just have to keep plugging along until the next option becomes available and be determined to make it last as long as we can. Some days are tougher than others but given everything we have all been through, my money is on us!!! 🥂0
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Same to you @tinazzie and do let us know how your consult goes. We'll be hoping it's a celebration for you.1
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Signing off as well… time for some deep breathing quiet music then do my blood pressure (it has been very high) have a good week everyone😀1
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Totally agree with you @Taita I make it a point to only look ahead max 6 months and tied to some milestone to achieve. Having goals that are achievable really work for me. The other is the same thought every morning when I wake up and that is....ha ha cancer, beat you one more time!
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You too @ToughAsTeal. A little Zen will do wonders for your BP. You have a great week too.1
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@Taita enjoy your day and the rest of you trip. So glad you were able to go and that you're clearly having a blast. I've never been to Italy but I hear the scenery is awe inspiring. Enjoy.1
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Dinner is about to arrive so I will sign off now. More pics next week! 😀1
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Signing off too now. But not before sending good thoughts, big hugs, and healing vibes to all of our gals in treatment or those waiting for news on their conditions. We all struggle in our own ways but no matter what the case, like Taita said, my money is on us.
Enjoy this magnificent weather wherever you may be and hope to hear from you again next week.
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THURSDAY JULY 14 AND TIME FOR ANOTHER LIVE ONLINE CHAT IF ANYONE IS OUT THERE.
I've been reading all the recent posts, many of which represent members who've been surprised by recurrence, often after many of months and sometimes years of NED. I'm not a proponent of dwelling on this disease 24x7. It's far more productive and good for us emotionally enjoy what we have but it does bely the need to keep a constant vigil for symptoms and to advocate to have them thoroughly checked out. Let's think about our members today who are wrestling with surprises and wish them success in their treatments.It is past 1:00 so time to get started. Welcome anyone out there who'd like to chat today. Say hello and tell us what's on your mind.
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Oh, and hope we hear from our jet setter, Taita, today Love to know where she is in her Italian expedition and how she's feeling.0
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Helllooo! I have a bit to share. Roller coaster of emotions last few days. Monday, the oncologist overseeing treatment called me to recommend treatment end. Said despite my CA125 continuing to drop (it's at 15), the scan doesnt lie about tumour growth and...thats it. I asked if she would consult with the oncologist at Juravinski. Reply "why would I do that?!" So i asked if there were any other options... and yes, there were 3. So, I will be on a few week break to get gemcitabine out of system.1
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Will be starting on Vinorelbine end of July.
i did call Juravinski and talked wi my oncologist there. She said the big continued drop in ca125 was for sure an important factor, and that the tumours growth was considered minimal.Wtf1 -
She wasnt going to veto the grand river dr decision for course of treatment,...and didnt disagree with choice. But i sure get sence that i would have been continued on gemcitabine if i had remain in hamilton1
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My blood pressure is all over the place. I feel pretty good. Great poops (bragging)1
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@ToughAsTeal congrats on the poops LOL. That's not unusual having two doctors with differing opinions. They all seem to look at things in inconsistent ways. Certainly you're so new to the new doctor and clinic it would be logical to me to get an opinion from your gal at Juravinski since she's been following you all this time. Is this new doctor a gynecological oncologist? What are the options she's has for you outside of the Gem. Did they give you any detail on the amount of growth they measured......millimeters or centimeters?1
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Hi Ladies! Sorry I'm late...
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@Toughasteal Sorry to hear about the conflicting advice you're getting and the roller coaster ride you're on. This whole cancer thing is a rough go but I'm hanging on to the roller coaster as best I can and for as long as I can. I'm seeing the oncologist the end of this month but am disappointed in the amount of time it's taken to get an appointment since the recurrence was noted the end of June.
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@fearless new dr is not gyne oncolgist. Cant recall is she is specialist? Generalist? Egoist?(lol)
other options were... oral Etoposide.... or Topotean. She said Topotean was very hard on platelets, even harder than gemcitabine so she did not feel it would be best option for me.Dr juravinski said measured in mm.0 -
To all my teal sisters..i am feeling driven and determined compared to defeated earlier this week.
@Annie1950 is a last minute/short notice cancellation an option for you if something opens up?1 -
I've been having bad luck with oncologists too. My original gyne onc surgeon/oncologist has very limited clinic hours for the past year, so I was transferred to another oncologist, who I actually liked very much. But she went off on mat leave at the end of last year. Now I have a "fill-in" temporary resident-oncologist, who is getting married next month. I don't know who will be in charge of my care going forward - especially troubling at this time of need.0
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@ToughAsTeal My oncologist has been on vacation and won't be back until next week. I asked if I could be looked after on a temporary basis by another oncologist but was told no:(0
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@Tinazzie That's hard to take. Somewhat similar circumstances happened to me at the beginning of my journey, a maternity leave for one and retirement for another but at the end of it all I ended up at PMH and am very pleased overall with my care. So take hope that you might find the 'one' after this stressful time:)0
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@Fearless - Vol Mod, that's why I asked about possibility of 2nd opinion. My breast cancer oncologist at the time too, had "transitioned" me over to my family doctor. So, I don't really have a breast oncologist any more. I'm hoping gyne onc will make a new "referral" to breast cancer clinic. It all seems very confusing.
@Annie1950, did you go ahead with consulting with the Cleveland Clinic? How did you find that process?0 -
Hi @Tinazzie and @Annie1950. Glad you were able to join us this week. Boy, it seems everyone who's struggling with new news right now has unusual twists included. ToughAsTeal with that awful quandary....which doctor should I rely on. I do know my oncologist who's a medical oncologist often just dusts off any progression noted when it's only a mm or two or three. So who do you rely on? Get a third opinion? I'd almost be tempted before dropping what seemed to have been working. What do others think?0
