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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@GloHo it's always great to take a preventative approach, even if it doesn't seem to work. I'd suggest that without the efforts you made before starting your treatment the reactions you're experiencing mijght have been worse. But I'd highly doubt there is anything to do with the port insertion. Thanks though for the tip they are using the power port in Ontario now. They used in BC very successfully for sometime now. Perhaps I'll start pestering to have a replacement.0
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@GloHo
I too have a power port. They are awesome. I go and get my chemo nurses to access it before my CT and voila no IV. My veins are so small and mostly inaccessible so it works great! I was on Caeylx for about five months (no Avastin). Swelling of the feet and hands was the big thing. Moisturizing really helped. I have been on Avastin since September 2021 and it does have side effects that vary from one person to another. I will say I know a number of people who get the red itchy rash from the DEX (steroid) that they get prior to treatment. That may be the culprit. Ask your doctor next time you see them and maybe they can adjust. I also know a few people who take Claritin for five days after infusion and it really helps. Another question for your Doc.0 -
I just did a Covid Rapid test, just to be on the safe side. Told my husband the good news is I don't have Covid, the bad news....I'm pregnant. LOL,he just about fainted! Now he's off to Napanee to find me some cold meds but I reminded him the shelve are empty of the OTC cold and flu meds. I'm just happy with some ltea with lemon and honey. It's really a shame the supply chain is so bad....first for children's meds and now the adult versions.1
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@Fearless_Moderator Yes! I can't wait to see how it all works. The Dr wrote me a script for the Emla numbing cream...little did I know that it is not covered on my private plan and, if I were 65, is not covered on the government plan either. So $80 out of pocket. I will give it a try. Thank goodness you only need a little bit each time, it should last for quite a few infusions. I wasn't sure I was going to use it, thought I might try it without, but I thought "what the heck, why put myself through any more discomfort!"
@Taita
I don't think it's the Dex...I had that for my first two rounds of chemo (17 treatments) and only got a slight face flushing during use. The body does change though and with everything these drugs do our systems, I may now be sensitive to it. Thanks for the tip. I will ask about that possibility.
I will keep moisturizing to try to keep the feet clear and am looking for something that may help with the hands now. Who knows, with everythng I pre-bought, I may have something in my arsenal of products that will work.
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@Fearless_Moderator
I do hope your hubby finds something to relieve your symptoms.0 -
I"m totally jealous that you both have power ports. Oh well, they usually only have to access my teeny tiny jiggly verins for CT scans so I can live with it. That said, they told me about the Emla cream when my port was first inserted. I had chemo the next day so no time to get the cream and honestly inserting the needle was very easy. Some of our nurses are so good I feel nothing at all. Others, it's but a quick prick so I've never needed the cream.
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@Fearless_Moderator
You are a warrior. I am just sooooo tired of all the needle pricks!!0 -
@GloHo I was on a heavy duty desensitizing effort a couple of years ago and any number of the drugs were known to produce rashes or other allergy related side effects. They recommonended I keep Benedryl close at hand but I used Claritin instead. It worked effectively but didn't make me drowsy like Benedryl does. Perhaps try that.0
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Well ladies, we're at the top of the hour once again so time to say good bye for another week. I hear the weekend will put this gray rainy foggy weather to bed so hoping Siri finally read a forecast correctly.
Have a good week and I'll hopefully see you back next Thursday.
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I agree @Fearless_Moderator. I mostly never feel the needle going in. Soooo much less stressful than the poking of the arms and hands. @GloHo the other thing I found helpful with the neuropathy was soaking my hands and feet in Epson Salts. After the soak it is a bit more sensitive but within an hour or so it felt better. I have all the feeling back in my fingers but still have issues with my feet, some days worse than others.
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@Fearless_Moderator
Unfortunately, Benadryl is supposed to be the best for skin issues and it does not come in non-drowsy formula. I would have preferred a non-drowsy formula (in the past, non-drowsy keeps me awake for hours and hours and hours...which I would rather have than sleeping/grogginess). Hmmm...guess I should so some research and see what other allergy med is supposed to help with skin rash and comes in non-drowsy...maybe it will be less effective, but at least I can stay awake. Another side effect I can do without...fatigue!0 -
Thank you both for your suggestions and support. Have a great week/weekend. Let's hope that sun does come out. It makes such a difference!0
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@GloHo I had sever hand/foot syndrome. At its worse, was taking Percocet every 4 hours. Could not stand, dress myself. Used a borrowed walker to get to bathroom but would need to be wheeled out. When it turned corner to improve it happened quickly. After that, the strength of caelyx was reduced and it was the solution needed. I used Udderly Smooth. Best amazing price I found at Juravinski pharmacy (if your cancer center has a pharmacy might be worth comparison $).0
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OMG @ToughAsTeal, I'm so sorry to hear your experience was so extreme!
I recall you had responded to a query I had regarding products that would help me and I did go out and get the Udderly Smooth cream. Thanks for mentioning again, appreciate it given chemo brain. I have been using it very frequently on my feet (started even before I had my first infusion) and that is probably why my feet have not been affected (yet?). But I have found keeping my hands lotioned up is not as easy. I have creams handy throughout the house, and I use them after washing my hands, etc. But the stuff must wear off faster than I can keep them lotioned. I told my husband today that I am going to have to lay off washing the dishes (darn!) and stay away from cleaning products in general (which I have already been doing). My husband is good and will pick up the things that I can't do. He has also been the main cook since he retired (he likes to cook, I don't - win/win!). I now feel like he is doing so much. Then I give my head a shake and think about everything I've done over the years...and we're not even yet! (haha) We will be celebrating 46 years this Sunday. Where does the time go?
Thanks for taking the time to review today's session and responding to me. Very much appreciated!0 -
WELCOME TO OUR WEEKLY LIVE CHAT. iT'S THURSDAY JANUARY 19 AND 1pm EST SO WE'RE READY TO START TODAYS CONVERSATION.
How is everyone? What's on your mind today? Any news to share? Questions to ask? What do you think you can offer others today?
Anyone else hunkered down awaiting the forecasted freezing rain or are you with us from a location that's having some good weather today? My husband saw a robin on the front lawn yesterday; a sign of early spring to come and while I tend not to deal in false hope, anything that may portend a shortening of winter weather has my vote!So let's get started ladies......hit a comment box and say hello.......
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Happy Thursday!! Grey it may be, but I love that you have a robin siting!It’s raining here Guelph and windy! My first outing this morning since the edema. Almost blown off my feet!Dr is slowly tapering me off dexamethazone.Oncology Radiation Dr said we could consider more radiation around July (if needed, and heck if I am still here!!) so it’s given me a new goal. I hate the “between two kingdoms” (although I loved the book).. but I am feeling happy and up today1
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How has our fearless leader been?0
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Happy Thursday everyone! Yes the freezing rain has hit us here and the wind is something else! Cancelled my walk downtown. @Fearless_Moderator I am heading to your neck of the woods tomorrow so hoping the weather drama is over by then. Getting my 5th Covid shot next week and my flu shot. Had to keep postponing because of fevers but 🤞 looking good for next week.0
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@ToughAsTeal love your perspective and positivity! While it isn’t always easy, I think it is our best quality and best defence.0
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Hey Hey Hey @ToughAsTeal I"m so glad to hear from you and to hear you're on the bright side of life today. Me too, despite the most miserable case of laryngitis EVER!.....although my husband seems to be relishing the "sounds of silence"
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@Fearless_Moderator @ToughAsTeal I too feel “up” and positive these days! Maybe we should start a club! Oh wait we already did. 😂.1
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Hello!
Rainy and windy today and very dull outside. We too still have a freezing rain warning in effect here too.
I was to have a friend come over for a visit today and cancelled as I am feeling quite nauseous today for some reason. Just took a second dose of sublingual Odansetron and hope it calms it down.
In the meantime, in the short period of time I felt ok, not great but ok, I have started beef on the stove to make beef stroganoff. They can finish off the rest of it as long as I have that part done.
Yesterday, was a very highly emotional day for me. I went to a friend's funeral that had cancer and died to a brain bleed. I am thankful they are no longer in pain but sad that his partner (wife) will miss him terribly. Even with all the reading I am doing on dying, I can't get over a part of it. I went alone, saw some people I knew there and did chat and cry but when it was time for the service I had to sit on my own. This was my choice, I had to be alone, and as they 'sit in it' and get myself out of whatever I was in. All I could think of at times was, this will be my loved ones one day and what they are feeling and experiencing and that I will be the cause of it. So, that is what it was. Guilt. Guilt of being the one to cause so much sorrow and grief. That is my next project to delve into and find out what I do about it. It was terrible but a good lesson too. Then we went and signed our wills as we had revisions made so that was hard. I had to guide the hubby who he thought should be his Power of Attorney as God Bless him, he thinks I will live forever in some ways. So that was difficult and for me to look at the picture of what that looked like.
I was exhausted by the end of the day. So I watched Emily in Paris on Netflx to get my mind out of all that.0 -
@ToughAsTeal
Glad you are feeling a bit better by the sounds of it and your mood is up. That is good.
@Fearless_Moderator Sorry to hear you are still fighting that. Taking its sweet time leaving isn't it?
@Taita Good to hear you are doing well and are up today too.
I started a blood pressure medication this week too so am hoping that works.
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@Taita
thanks for the warning about the freezing rain hitting your end. That gives my husband about an hour to get into town and back with some much needed supplies so he's headed out now. You sound 'up' today as well. Hope the weather doesn't get in the way of getting your Covid and flu shots tomorrow. My laryngitis is not something either shot could have prevented although I stand by thinking they may have lessened the flu- llike symptoms I"m experiencing now. Fortunately I'm on the tail end so hoping to be up and doing a jig again in another couple of days.1 -
And apologies ladies, as you were writing about positivity, here I am writing about a dark topic.
I am not depressed so that is good just thought processes I am going through.0
