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).
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Let's get started! Come and introduce yourself
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@GloHo the Benadryl kicked my butt too! I would become pretty sleepy after my pre-chemo infusion, but I’m far too hyper to fall asleep, lol. Turkey is IN, onions and celery are being sautéed. Potatoes are next! The skin is so lovely this time of the year that I never peel them. Trying to sort out Halloween decor. Blasting bluegrass through the house to keep me going! Nothing like the sounds of a banjo to keep my feet moving! 🤣🎃👻🍁🦃
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Hello Everyone. I think I've found the thread where all the conversation is happening? Thanks @Strongwoman and @Alwayslearning for checking in on the other thread! 😍
I hope everyone had a good Thanksgiving. By way of introduction, I'm 55 years old, from Calgary, and was diagnosed with Stage 4 HGS in July. I went to my doctor because I thought I had pneumonia… but… NOPE! I immediately started chemo due to the fluid on my lungs (pleural effusion), I was having to go to the hospital every 3 to 4 days to have fluid drained. My treatment was 3 rounds of chemo and then scans to see if I was able to have surgery. Turns out I responded well to the chemo so I just had my surgery last Monday (Oct 7th). Total hysterectomy, tubes and ovaries, cervix and omentum. The surgeon was happy with the results and actually said it looked better inside than on the scans (good news I hope).
Next is about 4 weeks of recovery and then chemo starts again - minimum 3 / maximum 6 more rounds with scans happening after the first 3 rounds. I'm a little worried about the chemo again. I seem to have tolerated the first 3 rounds with minimal nausea but lots of leg pain and general yuckiness. I did have a severe reaction to the Paclitaxel the first 2 rounds so I was switched to the Paclitaxel NAB which was a little more intense. I'm worried it's going to be more intense if I'm not fully recovered from surgery - wondering if anyone else experienced this - chemo so soon after surgery? Was it harder? Same?
Anyhow. I'm trying to keep my spirits up, although I do have occasional bouts of feeling sorry for myself. I've joined every support group I can so hoping that will help. Reading the conversations in this forum I can see a lot of super strong women supporting each other which is what I'm looking for 🙂
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Hi @BennieTBear …great news on the surgery outcome and I give you high marks for what appears to be some good energy, just a week post surgery. Gets lots of rest during your recovery. I will look to other Teal Sisters to comment on chemo soon after surgery. Mine was 6 weeks post surgery.
You are allowed to feel sorry for yourself…that's totally normal, allowed (choose your adjective or verb) however, lean in as much as you need to all those support groups, including this forum. It's a good place for comfort and support. I'm 3 months post my last chemo and 3 months into the Lynparza maintenance drug however I still have the occasional bout of "why me" with a few tears. It's being human.
Remind me as well, do you have a good support group surrounding you?
Stay strong. You are doing great!!!
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@BennieTBear Welcome! Although my experience was not identical I had 6 rounds of chemo prior to my surgery followed by 2 more rounds post surgery. The first 6 rounds kicked the crap out of me however I breezed through my 2 post rounds without any problems. My first round post surgery happened 4 weeks after. Feeling sorry for yourself is allowed as a matter of fact I think you will find we have all felt this way at times. Like @Alwayslearning I’m now 5 months post my last chemo and on my 5th month of Lynparza (Olaparib).
Be kind to yourself while you heal and gain strength and don’t be afraid to ask questions. Knowledge is power!1 -
@BennieTBear welcome, I had 3 rounds of chemo, surgery early June 2020 then 3 more rounds right after surgery. I completed the last 3 rounds by July 23 2020.
It was okay, no worse than the first 3 and it was oddly comforting knowing the surgeon had removed all active cells and the chemo was doing cleanup.
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Thank you for sharing with us. You are doing remarkable for 1 wk post surgery. I can't say I felt the same when I had mine. So I commend you. As the other ladies have stated be kind to yourself and rest as your body is still healing. Having feelings like you are are normal too. Let them come and you will find you will feel better later. These feelings may ebb and flow over time too. That is perfectly normal too.
I had chemo 6 wks post surgery so can't comment much on yours being sooner. I will let the other ladies do that who have been there.
Wishing you much rest and healing.
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@BennieTBear welcome to the club nobody wants to join. This group has been immensely helpful to me when I was first diagnosed in June 2023. I had my surgery July 2023 and started chemo 6 days later. I had 6 rounds of carbon and taxol every 3 weeks. I reacted horribly my first infusion and then to a lesser degree the 2nd and 3rd time. When people ask me I tell them that chemo didn't kick my butt!
My biggest side effect was fatigue fatigue and fatigue. I just wanted to watch tv all day long and I spent much time doing so. My other 2 side effects were constipation and joint pain.
Best of luck to you in your final 3 rounds
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@Strongwoman his name is Penny : )
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Hi @BennieTBear and welcome to our support group. I began receiving chemo (carboplatin/paclitaxel) and immunotherapy (Bevacizumab) just under a month post-surgery. I had 6 rounds of chemotherapy/immunotherapy every 3 weeks, and then 11x immunotherapy only every 3 weeks…a total of 11 months of IV infusions (August 2023-July 2024). Like the other ladies have stated, it was fatigue and joint pain that knocked me down a bit. I oftentimes experienced some abdominal bloating which was relieved with a heating pad. For me, Restoralax worked well to keep my bowels going. I kept a daily journal of side effects and also took my BP several times a day. Sometimes my bladder was a bit annoyed after chemo, so I wore pads to bed because of leaks on my way to the toilet in the middle of the night. Coming into winter, perhaps you may want to invest in a heated blanket? I love mine, and spent a lot of time resting on top of it during the day when I went through chemo. Thinking of you and sending hugs! 🤗
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@HorseGirl- bevacizumab is not immunotherapy but a blocker for new vessel development that the tumor would need to survive. Good data that it also works very well ib ovarian tumor. I got this for my first round chemo and then like you a total of 12 cycles. I fought to also get it during my 2nd round of chemo for recurrence-now- got it on compassionate use as not paid under OHIP. Good news if you recur, you haven’t had immunotherapy yet which is currently a requirement for many clinical trials. Sorry to mix in but thought you need to know this. I had a chat with the chief of the GynOnco department at PMH today and was left disappointed as to the way he talked down on me. Did not have anything new to offer but tried to talk me out of searching for clinical trials. This is not what the National Institute of Cancer in the US recommends according wich every women with ovarian cancer with recurrence should be in a trial. Guess, need to continue to advocate for myself…
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@Tanja I was wondering that myself too. I thought it was another class of medications not immunotherapy. I've never had it, but I remember mid way through chemo I mentioned it to one of the residents on my team and his words to me were ' Bevacizumab s no joke" whatever that meant. Never brought it up again until my oncologist mentioned it to me at the end of chemo. She said she could give it to me as maintenance but would rather " wait and see"
I do a lot of waiting it seems lol. I've read quite a bit on how the data shows it works in ovarian cancer. Now I'm wondering if I should have done the maintenance . I'm stuck between the two schools of thought, a: give everything upfront and hope for the best, and b: save treatments for down the line if needed.
Sigh.
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@Melissa. Beva is pretty harmless and we’ll tolerate. Side effects include proteinuria and hypertension but all reversible. My blood pressure went from systolic 110/120 to 140/150 but can right down. I think if you don‘t have tumor right now there is no urgency but I also like the idea of having some maintenance. With my clear cell, Platin-based chemo does not work that well, so I err on the „more poison is better“ side trying to survive this cancer. I read about the history of cancer medicine in „ the Emperor of all Maladies“ learning that once the tumor is not local anymore then there is a need for efficient systemic treatment. It turns out that many of these successful systemic treatments involve several drugs and prolonged time of treatment - not only 6 rounds.
I believe in Beva as being a good add-on for clear cell but also learned that tumors can develop resistance to that. And also, never trust a resident with drug advice, they are too inexperienced.
maybe for your next round you want to .0 -
Wow! I had NO IDEA that Beva wasn’t immunotherapy…IDK why I was given to understand that’s what it was? 😳 As for the harmless part, I found that my joints really ached and I needed to take Restoralax for a few days after receiving it. I am Stage 2B HGSC, currently NED. Just feeling generally tired and weak these days. Just have no stamina whatsoever. 😑 Anyhow…I corrected my earlier response about the Beva.
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hi everyone! Just a little update starting cycle 2 tomorrow of carbo+pax! I started to lose my hair the past week, it’s been quite itchy. The good news is my c125 has dropped and is back in normal range!
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@itzwhatever glad that your CA 125 has dropped! Yes, the hair loss is a nuisance. I used to apply a wee bit of massage oil or coconut oil on my scalp. How are you feeling overall?
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@itzwhatever I was losing my hair so quickly by the 2nd week after my first carbo/pax cycle I got my hair dresser to shave it all off. I was tired of my clothes being covered in hair and finding it in my food! My great granddaughter bought me a hat to keep my head warm! Also that’s great that your cancer markers are already dropping!
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@itzwhatever so happy to hear your cancer markers have improved!
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@itzwhatever my hair also went quickly. I never had to shave it as it pretty much came out in chunks in the course of a few weeks. I moisturized my head every day. It seemed to help reduce and eliminate itch. My eyelashes disappeared by chemo 4 and finally my brows by chemo 5. I painted on brows for a few months. I was shocked at how fast they’ve grown back (they are pretty much fully returned less than 3 months post my last chemo).
Congratulations on the CA 125 drop. Every win is a cause for celebration.0 -
thank you for showing lovely photos @HorseGirl and @JoanEG !
Today is day 3 of cycle 2, definitely feeling fatigue. This time I’m lacking a bit of appetite. Other than that I’m staying strong 💪
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