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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It's December 10.....WELCOME TO TODAY'S LIVE CHAT.
What would Thursday be without some info or reminders
- For those of you who don't get a Facebook OCC feed there is a new survey out there you might be interested in participating in. It's not OCC led but they are supporting recruitment of participants by creating awareness. You can get the details by going to: www.covid19livingwithcancer.ca
- Exciting news. The recordings of the sessions from the National Symposium are now live on the OCC website and would be a wonderful review for those who attended the Symposium and an important resource for those who did not. You can access the series at: https://ovariancanada.org/Living-with-Ovarian-Cancer/Webinar-Series. I'll be posting this as announcement in the main body of OVdialogue later today.
Day 8 of cycle 2 in my current chemo regimen over with yesterday. Just the Gemcitabine and while it can cause a burning feeling in the veins....which they manage quickly if not tolerable...it does live up to its nickname, Gentle Gem. No side effects really. Tired but that's about all so far. Next week is my off week so time to pamper...and get stuff done; not which requires contact with any humans other than my husband. Seems my neutrophils are already pretty low and not taking any chances. Just ordered pick up of the weeks supplies from Loblaws so a trek into Kingston after today's call for my prepaid contactless pick up. Other than sometimes not being able to find exactly the item I want, it sure is convenient and hope they keep up the service post Covid.
Well ladies, enough of my rambling....time to get started... so again, welcome. What's up with you?0 -
Hi Fearless!
Nice to hear you are in good spirits, how many cycles will you have altogether and what are the other chemo drugs you are getting?
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@KarenBemi
@BeamBlossom
@cbot
Welcome back ladies. How is everyone today?....Afternoon giggle: What concert costs 45 cents?
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Good day @Fearless - Vol Mod, I am glad that you are doing okay after your last round of treatment.
I also have exciting news. I have been in contact with Alicia and I am now part of the Patient Partner Team. I received my first team email this morning0 -
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@BeamBlossom
6 to 9 cycles of two back to back Wednesdays and one week off. Getting Carboplatin and Gemcitabine on Day 1 and just Gem on Day 8 followed by an injection of Lupelga on Day 10 or 11. Lupelga each cycle apparently replaces the need for a long series of Neupogen to boost Neutrophils. CT at the end of 3 cycles. If we're showing progress will continue same for another 3 cycles. If not, adjust meds. End of 6 cycles if I have a full or acceptable response then we stop. If not, then up to another 3 cycles.0 -
Hi @BeamBlossom and @Fearless - Vol Mod,glad to be here today.I have my 4th Session of chemo tomorrow ( carbo / taxol), not looking foward to it.Last session took a week to get out of it.0
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@KarenBemi close. It's 50 Cents with Nickleback. Pretty lame eh?
Wonderful news on joining the OCC Patient Partner team. I do similar work for AstraZeneca. On my 13th project for them including 3 informational videos for their teams who rarely meet a "live" survivor, lots of surveys and online interviews to comment on their plans and approaches from the patient-perspective. Most rewarding is actually seeing they make changes from our input.1 -
@KarenBemi & @Fearless - Vol Mod - its great that you can have an impact1
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Hi everyone.
@Fearless - Vol Mod glad to hear that you're faring well with the treatment, other than the fatigue. I used to drink plenty of coconut water (from Costco) after I heard that they help to boost the neutrophils.
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I have to choose between Taxol weekly and Cyalex (sp) for treating my recurrence. Avastin will be added to both.0
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@Fearless - Vol Mod ...that is the best dad joke I have heard today anyway.
I am excited to be able to support our community through this partnership. At this point, I am not sure how much I will be able to contribute but...EVERY LITTLE BIT HELPS.0 -
@BeamBlossom
@Rad
Yah, no Taxol...no bald. I do find a wee bit more hair in my brush but nothing of consequence, thankfully. But like the two of you, after the infusion of the Carbo and Gem as a combination in one sitting, day 3 and 4 were really brutal on me this time. I don't remember the same from four years ago. But my oncologist did say that although I'm almost four years from my first chemo, I've been on Olaparib and the PARPs still have their own toxicity so that can lead to hypersensitivity to some of the chemo drugs. That said, it probably felt worse than it was since I was expecting it. Hopefully not so back next time which is the 23rd. If it is we'll be eating Swanson TV turkey dinners for Christmas LOL
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@BeamBlossom, so sorry to hear about the recurrence. Was this confirmed in your 2nd post-chemo scan? When do you start treatment?0
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@Fearless - Vol Mod, glad to hear this round of chemo is going ok for you. I've had a rough week. Cystoscopy yesterday revealed a polyp in my bladder. I also developed ascites which worsened over the past week. Had 1.8 L drawn off today through paracentesis. Meeting oncologist next week re: next steps.1
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@Fearless - Vol Mod 0 I have not heard of Lupelga, that's a great tip, I was just noticing that 6 weeks after my final frontline chemo, my neutrophils were still only 1.1 In these COVID times that is so scary.0
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@BeamBlossom
Be sure to check the side effects ...Taxol versus Caelyx. My bestie survivor out here is on the Caelyx/Avastin regimen and has had a rough time with with mouth sores and hand and foot rashes and lower back aches. She tolerated Taxol much better but this is her third, maybe fourth chemo round in five years and the Taxol had begun to lose its efficacy for her so they had to switch her. But, of course, we all respond differently. She did say, ,the other day, the mouth sore issue was starting to resolve enough that she could manage now.0 -
@Fearless - Vol Modhave no hair right now but a toque works great now because its pretty cold in southern Ontario. Happy to hear you are tolerating your treatment alittle ok.0
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@BeamBlossom and @cbot sorry to hear about your new diagnosis, please stay strong and positive!1
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@Fearless - Vol Mod - yes, I am carefully considering the side effects, I know the Caelyx is not picnic for many, but some find it was easier then Taxol. I am prone to skin rashes at the best of times, so I fear I would not be lucky with it. Reports show the Taxol is more effective, yet, I'm concerned that it maybe didn't do a great job for me with frontline. The docs say I am carbo resistant, seeing as it was administered with taxol, how do we know I am not taxol resistant?0
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@cbot so sorry to hear your news. Easy to say and hard to do but don't get into a panic until you have something to really be worried about. Polyps don't necessarily mean cancer...in fact are very often if not usually benign and might not even be related to the OVC. My father actually had bladder cancer , kept stable for over 20 years. He eventually died of lung cancer but the two had no connection apparently. The ascites and the fluid build up from them can be just awful I hear. Hopefully now that you're drained of the fluid they can come up with something to keep it from coming back. Do keep us posted on what your doctor suggests as next steps. Such an awful time of year, not that any time is really any better, to have to go through all of this. Wish I could just give you a 'real' hug right now. I'm sure you could use lots of them hon.0
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@cbot, sorry to hear about the rough week you've had. Its good that you'll be able to see the oncologist soon about the next steps.
I'm having a rough time too - especially with my back and increasing fatigue. Got my X-rays done last week but will only be able to see my physician after the holidays.0 -
I haven't had any scans after my treatments...It is sounding like a rare thing not to have scans. I am not sure if I should be worried about this or not. Listening to you ladies regarding your scans has me wondering. I did have a major debulking and complete hysterectomy...is this why I haven't had any scans? I also haven't gotten a CA125 test since my treatment?0
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Sounds like 2020 just keeps dealing us bad cards, 2021 has to be better!0
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Thanks @BeamBlossomm @Tinazzie and @Fearless - Vol Mod . I do feel much better after the paracentesis. Not sure what's happening yet with the polyp. I'm assuming it needs to be biopsied and I'd like it addressed ASAP, as I've been having recurrent UTI's. I appreciate your reassurance @Fearless - Vol Mod . Sounds like a few of us are going through a rough time....0
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@Tinazzie
You're the third I've heard from about back pain and finding some myself. For example if I'm in the kitchen standing at the sink or counter for more than a few minutes I get this awful pain in mid/lower back such that I have to go sit down. I thought it was just because I've let my core strength go downhill over the past few years but now wondering if it's just one more side effect of the chemo to deal with. Is that I feel similar to what you experience?1 -
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@Rad - now is a good time to be bald, I find the wigs unbearably hot to wear in the summer, I'd rather be bald in the winter if I had a choice. If I go with the Taxol, weekly, it will be for a LOT of weeks, so I will be bald most of 2021
i guess. I will consider the cold cap if I go with the Taxol and try to save the 3 inches of hair I now have.0
