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!
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@Eileen I released your first post and not the duplicates. For some reason if you click on Post Comment more than once the system automatically places your first comment and all the others into Spam and I have to release it. I have no idea why it would think duplicate posts might constitute Spam but thanks for letting me know.0
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Ty @Fearless_Moderator. I thought it was me screwing up here. And kept pushing post comment.0
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Its a nice morning here in BC and I missed the chat. Darn. I was out in the garden.0
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@Taita
Hope you are feeling well after your cataract surgery. I remember picking my Aunt up from hers but sadly don't recall the after effects of.... Here is to hoping pain/soreness is minimal and that you feel better soon. I think I do recall that seeing afterwards is a bit cloudy but is slowly comes back.....correct me if I am wrong.
Sounds like you have a lot going on and hoping your current treatment is headed in the direction you want it to.
@Eileen No apologies necessary and thank you for explaining. I am usually fairly good at abbreviations but that one "got me". Here is to hoping either your GP or the gastric specialist will figure things out soon for you. I imagine it must be incredibly frustrating.
@babs272 Glad to see you could join us. Nice to be working in your garden. Goes to the post I put in Moving Forward and using your hands.0 -
Hope all you wonderful ladies have an awesome Mother's day on Sunday .1
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GOOD MORNING/AFTERNOON AND WELCOME TO TODAY'S (THURSDAY MAY 18) LIVE ONLINE CHAT.
Beautiful here in SE Ontario today. If it's the same where you are I don't blame you for getting out for some sunshine, perhaps readying your garden for planting, making plans for the long weekend and before you know it our chat and has come and gone and you missed us. Always the next week. And if you have anything urgent to share or ask you can always send me a private message and we'll can work getting you posted quickly.
Chemo for me yesterday...and a blood transfusion (YUK). Feeling pretty decent today though so that's good. I'll get my CT results on Tuesday next so we'll know if this regimen is doing any good. To be honest for once I'm not optimistic but as usual hopeful. I'll be happy if I'm just stable at this point. But I'm only on the second cycle of Gem and it usually shows effects slower than other chemos so we'll see. Have a physiotherapist coming in in two weeks. Hopefully he can do some good to my legs and ranges of motion so I can get down and dirty in the garden this summer.
How was Mother's Day for everyone? Always a treat to be celebrated. I got beautiful flowers from my son, a lovely effortless day from my husband. All in all quiet but just what I wanted and needed last week. Anything special at your end?All for now gals so those of you who are here to chat say hello, let us know you're here and what you might want to share today. But it's alright too to just scan the conversation. Participation is not mandatory. So let's get rolling gals.........
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Hi everyone.
@Fearless_Moderator Fingers crossed that this regimen is good!! Have you had a blood transfusion before? How was it? Interested in hearing more...
For me...
Trial highlights (or low lights?):
Day 1 they gave me two Benadryl (part of the pre-treatment routine). I was slurring my words in an hour and didn’t return to anything resembling normal until 9:30 the next morning 🤪.
Day 2 I advocated for a reduced dose of Benadryl!! They were unsure what could be changed because it’s a trial. Ended up with a replacement antihistamine at the same dose rather than a reduced dose of Benadryl. SO MUCH BETTER.
Day 3 my treatment was put on hold because my liver enzymes “skyrocketed”!! They said I was at Grade 3 bordering on Grade 4. Good grief! This is my first experience with something going wonky outside of neutrophils and platelets.
Saw Dr today. More blood work…two counts came down, and one went up a bit. I have three more Drs appointments and even more blood draws before Cycle 2...so staying on top of those blood counts!!
The plan right now is to move forward with a reduced dose of the trial drug starting Cycle 2 on June 5.Oddly, I did not feel discouraged yesterday and am feeling positive about the move forward. I am actually feeling really good physically and mentally. So…all is good.
On top of all of this...my aboveground pool liner sprung a leak and we haven't had time to search for a new one with an install time that will happen sooner rather than later!
Does anyone have experience with liver enzyme spikes? Is there anything I can do to help my liver recover from this spike?0 -
Good Morning. Its a bit hazy here in bc because of all the wild fires going on. But its still gorgeous. Sitting outside on my patio. For mothers day my kids took me out to a hotel brunch and i also my youngest daughter took me to rona and i got to pick out a bunch of plants for all my planters.
My platelet count has come back up so i get to have chemo today. Fingers cross @Fearless_Moderator that gem does work for you. It has been doing great keeping mine shrunk and stable.1 -
Hi everyone,
I'm feeling fairly up at the moment. On a treatment break of about 2 months in the midst of which I will travel to the UK so immersed in planning that. Oncologist wanted a nice break so that I could enjoy the trip without the remaining side effects (taxol/avastin) and i'm really starting to perk up. I was starting to have more neuropathy and my nail beds were really painful (afraid my nails would drop off) but it is improving. And fatigue is improving. I wanted lots of energy while away. Thanks to @GloHo I asked my oncologist about ARTISTRY7 and it has just opened up at Juravinski so I will be referred to that trial when I return in June. thanks!1 -
@GloHo
I asked for a reduced does of Benedryl thanks to advice from the chemo nurses and mine was halved. Thankfully. I hate it and at full dose I was unable to safely take washroom breaks sometimes and needing my husband to stay with me. At a reduced does its much better. Not ideal, I would rather none at all but still better. Also my liver enzymes have been elevated since my recurrence and ALT was over 90 at one point. They reduced Taxol. Is this what you are experiencing or are your spikes much higher?
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@Eileen So glad to hear your platelets are up for chemo today. Sounds like you had a wonderful Mother's Day.
I opted for a quiet home day to prepare my body for the five-consecutive-day trial I had coming up. Had some nice face time with both sons and granddaughter.
@mjmck21 Good luck on the trial. You've probably seen my update... FYI: there is another woman participating in our centre and she is in Cycle 4 and has had no issues.1 -
Happy Thursday everyone. The signs in my right eyes is amazing for distance but no good for reading. The left eye still has the cataract and well I can’t see out of that so I am typing from memory. Hopefully it makes sense. Lol!! This was my off week from Chemo but it was rough. I think my Ascitirs is roaring back and the uncomfortable feeling, bloating and shortness of breath all that entails. Had two days where I couldn’t keep my eyes open.See my oncologist tomorrow. I think o will ask for a paracentesis. I don’t like to but I think I need to. It may be a sign the Taxol/Avastin isn’t working anymore. That and my rising CA125 probably means a CT sooner rather than later. Hemoglobin is still just 80 and that could be part of the tiredness for sure.On a happy note, the sun is shining and we will have some nice days this weekend.@F@Fearless_Moderator the good thing about blood transfusions is they usually give you some extra energy
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Wow, sounds like every one is in a pretty good place right now. Let's hope it stays that way and any tweaks that are needed in treat work well.
I used to love the Benedryl kick when I was on a recurrence where I needed it to prep for treatment. I was at a point where sleep was a problem and the Benedryl worked better than any sleep aid they'd given me. And by the next day my system was pretty well back to normal. Good that an alternate is working for you though, @GloHo. Hope you can find the pool leak and get it resolved. I so envy you for the summer. We talked about putting one in for years and procrastinated so much that no one has time available this year for an install. I don't need a big one. Just floating relaxes me so much. Oh well, we'll think about booking for next year and see what comes with my health.
@mjmck21 how lucky to be able to take that break to prepare for and enjoy your wonderful trip. I do hope it's a huge success for you. I'm trying Gabapentin right now and it seems to be helping; less nubness and pain. I'm on the lowest dose of 150mg twice a day. They've told me that if it's helping to up the dose to 300mg twice a day and even as high 450mg twice a day so think I've been on it long enough to move the dose up this week and see what happens.1 -
@mjmck21 They replaced the Benadryl with Chlorpheniramine (the chemo nurse says that is usually what they use to replace Benadryl if they have to). I was able to take it at the full dose which they felt would be more beneficial than the half dose of Benadryl (new drug - unknown side effects, etc.). Might be worth asking about when you return.1
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Hi everyone…so happy to be able to pop in and say hello this afternoon!0
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@Eileen sure hope the smoke doesn't get worse where you are. Last year was pretty scary for areas not used to it. And even where it's mild inhaling it isn't helpful. Sounds like a lovely Mothers Day for you last week. Your kids seem very attentive and loving. You're a lucky lady. And so glad your platelets have come up. Sometimes all they need is wee extra rest. Good luck with your chemo today.0
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@Taita sending you big empathy hugs regarding ascites and its accompanying misery. Mine are in my lungs when they occur and its the thing that surprised me most about this disease. I had never heard of this before cancer and even if I had, the term, like fatigue is so inadequate to describe the experience. I hope you find resolution and quickly and I dearly hope treatment is still working for you.
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I did attend the Lady Ball event in Halifax last week! It was quite powerful. I found it lovely to meet many of the Teal Sisters in our community. I think I have been leading such a secluded life for the last couple of years, that I was quite overwhelmed by the busyness and people at the event!
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@Taita sorry to hear reading vision is still annoying but good that distance has improved. You are getting the other eye done? Perhaps having both done will help improve both types of vision.
My hemoglobin was 79 hence the transfusion yesterday but they did it in combination with the chemo so I didn't miss the treatment. And yes, I do feel more energetic today. Sorry you may have to have acetis drained. I have yet to have any so can't imagine the discomfort myself but lots of gals here and in my personal circle complain of them. Sure does sound like you're back in progression and will have to move to another regimen. But wait for a CT to confirm that. I lasted about a year on the Avastin regimen and now my back up is Gemcitabine. Love that little bag of miracles those oncologists have to draw from !
PS: your touch typing is pretty darn good gal.0 -
@Fearless_Moderator thank you regarding Gabapentin. I will look into it because I think this will only get worse. Have you or anyone else used Glutamine to prevent neuropathy?. I have a reputable naturopath (oncologist approved) recommend it for four days following treatment but did not start until my last cycle due to some issues with our pharmacists ( a frustrating story I will relate at a later time) but I will try it again when I return to treatment. Has anyone ever used it, had success, problems etc? thx
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@GloHo you asked about transfusions. Yesterday was my fourth since around Christmas. They're really easy, although have to be done as an individual treatment. One bag is a two hour drip. 15 minutes slow to make sure you're not having an issue and then and hour and half full speed. And usually started or followed with a quickie Lisick dose to help your kidneys push out all the fluid. I only hate it because seeing it reminds me someone else blood is mingling with my own and is just a total turn off for me. That said I'm told I slept through my treatment yesterday.0
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@Tinazzie
The Lady Ball!! Sounds like you had a fabulous time. I think we all forget how much we are missing because we have all been hibernating because of Covid for so long it's like the new norm for us. And, it's taking awhile for in-person events to get back up and going again to get us out there enjoying being with others.0 -
@Fearless_Moderator have you perhaps a pain clinic out their. We have one here in kelowna where u can get the nerves froze for a few months at a time. I myself before cancer had back surgery and then yrs later experienced hip leg pain where they narrowed it down to 3 nerves and had a rhitotomy. But now its flaring up again and my oncologist told me i can see my pain cliniv dr she trusts them as they know what their doing. I cannot do another rhitotomy but he can freeze the nerves and use anti inflammatory injections. They last about 3 months. So not sure if thats an option for you.0
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@Tinazzie so great you're able to pop in and that you enjoyed the Lady Ball. I hear nothing but great stories about how powerful an event it is. I think the one you attended was the first since the Covid cancellations of events like that so I'm sure it was extra special for those attending.0
