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!
Nervous about second chemo
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Hi everyone, I'm a bit late joining into this string. but so glad to be reading. I also had delayed allergic reaction on day 10 after my 1st chemo. (sever, painful rash on legs, only relief was wrapping my legs in wet towels then bandaging with tensor wraps). A trip to my local emergency, where the doctor said he didn't believe it was a delayed reaction (he knew the oncologist nurse, at Juravinski had explained it to me). I tried benedryl, it did nothing. Claritin turned out to be my saviour. My 2nd chemo, I had immediate reaction to the paclitaxel, with team of nurse swopping in, closing the privacy curtains, talking me through it. I don't remember much more, and it was very scary. It was decided that they would do a desensitizing protocol for chemo #3 (as outlined by others who have posted). I was told that it's not the actual paclitaxel that I reacted to, rather, it's an agent ingredient in the chemo drug to help make it flow better. I was told this is common. I was also prescribed increase in dexamethasone pre chemo, and for 3 days following. Chemo 3 went really well. no nausea at all following. I only experienced a dex-crash... like I imagine after drinking 8 red bulls, except it lasted more than a week. that was the only side-effect for me this month. Had chemo #4 today, and it went well. (I was very nervous. But confident in the nurses. There were at least 4 of us in the area where I was who were all on the desensitizing protocol.
oh yes, and sniffling... me too, as I lost my nose hair!
Listening to comedian Jim Gaffigan got me through today's 6 hr chemo!
I am 55. My diagnosis is High Grade Serous Carcinoma, stage 4. Most recent CT scan, a few days after chemo 3, was positive, showing shrinkage of tumour and lymph nodes. (so really, that was only after 2 chemo, because they had to stop my chemo #2 with the reaction... so I only got full dosage on chemo 1 and 3). My next step is full hysterectomy and debulking surgery Sept 8. Supportive husband and 2 older teens who are also very Covid cautious. Journalling is so good. I wonder, for young children, a journalling idea is through colouring. if together, you can find some "feeling" type colouring books, cut out the pages, and let child create their own journal books of feelings, bind them with colourful ribbons they choose, etc. I can't also help but think of you and the Covid effects for the younger kids and school.
My thanks to all of your posts, and courage to ask and share.
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@nadiaC I'm doing a happy dance for you gal! Uphill from here hopefully. As for the, hopefully, temporary isolation I'm sure we can all contribute a list of Netflix series worth binge watching if you get bored. Seriously, hope your family all test negative and colds are over quickly so you can rejoin them. Keep us posted on your progress and reach out if we can help with anything moving forward. Big hugs....1
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Hi @laphilly Thank you for sharing your journey here. It seems like a delayed skin response to paclitaxel might be an indicator of a subsequent allergy. I’m glad the desensitization protocol and new pre-chemo regimen is working for you. Also happy to hear your family is supportive. My five yr old has been ‘journaling’ to some extent. He
makes little books for me that describe his feelings and wants.
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@nadiaC - glad to hear your second treatment went much better. I also took steroids the night before, the morning of and three days following my chemo treatments. I took an anti-nauseant and a Benedryl a half hour before the infusion started. So many meds but they helped me through the treatments and the first few days afterward. Good idea to isolate - take care of you! Enjoy the TV binge. I found journalling helped. I wrote a few short stories and completed a novel during my treatment. It helps take the mind away from doctors, drugs and cancer. So did "True Detective" and "Breaking Bad" LOL Hope your husband and son are doing well.
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@kastoyles I‘m so impressed that you wrote a novel and short stories during treatment. 💪🏼 My husband and son both tested negative for Covid so that’s good. It’s hard to isolate because I miss cuddling my little one. Have to focus on staying healthy though...
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@nadiaC what great news about the Covid tests. Like you say, tomorrow is another day and you'll be back to cuddles with your little guy sooner than you think. So wonderful though that he has an outlet to share his feelings with you. We get so focused on our own coping mechanisms, sometimes those we love can easily get left behind without our realizing it. Maybe you have a budding journalist or author in the making, eh? Keep your chin up and take care of that family of yours as they care for you. You're one courageous gal and I just know there's lots of good stuff ahead for you.
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@laphilly Welcome and thank you for sharing your story with all of us. It's always interesting to see how much we each differ in our responses to treatment yet how many similarities there are...and how our coping experiences can help others with suggestion they may not have considered raising with their medical teams. It sounds like you're in great hands, despite the bumps in the early stage of your chemo. Congratulations on the progress your experiencing. May it continue. And some great thoughts around journaling for the young ones in way that's fun yet meaningful for them and insightful for the family members. wishing you continued progress in your treatment and hope you'll continue to share with us all and let us know if there is anything we can do for you. 0
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@laphilly I too am going to Juravinski . Glad to hear they are looking after you! My watermelon size cystic mass was removed in May. Chemo started July 18 and I am 1/2 way through. Next chemo is 4 weeks from last one so not sure whats going on there. I will be calling nurse tomorrow to ask why 4 weeks this time. Last treatment they didn't have my appointments ready so they called and left a message.0
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Hi @laphilly..welcome and thanks for sharing ...as @Fearless said, our experiences are all different with our treatment, chemo and how we get through it..you're strong and a survivor..you have gotten through the first 3 cycles..I hope your surgery goes well for you...then more chemo? I didnt journal but I did use many of the programs available to help me get through...
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Hello @nadiaC - I'm so glad they were able to make adjustments to your treatment plan - it seems like they are really looking after you. Hope you are over the post chemo blahs after this round and all is well with your family and you're able to connect with them again very soon
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