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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I want to leave everyone with a smile for the weekend. I think we all feel like this some days!! 💃
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@JoanEGLooks like they’re doing a great job!!One year I decided not to decorate (quite a few years ago)…got tired of listening to my grown child complaining…ended up getting one of those outside blow ups of a tree with some penguins hanging off of it and it rocked back and forth.Love your dogs!! I miss mine dearly. Lost both last year…devastating! Not sure if we’ll get another puppy…have been glancing at pet finder. There are actually two dogs that look exactly like ours. Not easy since one was a boxweiller and the other a boxer hound cross.
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I agree…grandkids are such a blessing.I have one granddaughter…10 years.
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Here's my secret to a good night's sleep . . . I take 1/4 to 1/2 a Gravol. I heard a doctor on the radio talking about it once. He said Gravol was the number one sleep aid for seniors in Canada. I had already been taking it, so was interested in his opinion. He said that as we age that it becomes more and more difficult to bridge the transition from one type of sleep to another. Typically seniors wake up about 1 to 2am. Apparently Gravol helps make this bridge. I find I may still trouble getting to sleep, but if I take Gravol, I stay asleep through the night. I report the Gravol on all my medication lists and I have never had a doctor or pharmacist say anything negative about it. So, that's my 2 cents worth!1
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@jmbarrhaven
OMG...of course!! Gravol!! I never take it because the last time I tried it, many years ago, with one-half tablet I fell asleep at my friends kitchen table!! I think Benadryl would also work for me since I have had to request an alternate for pre-meds because it totally knocks me out. I am just going to do some quick research to see if either of these will affect anything in my blood work...given that I have had some liver enzyme issues and now with paclitaxel I'm probably looking at platelet and neutrophil issues.
There is hope!! I will probably try both just to see if there is any difference in the way I feel when I do wake up...don't want to be groggy all day after getting a good night's sleep 🤣. May have to play around with dosage - should do the trick.
Thanks so much for sharing!!
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@jmbarrhaven @GloHo this is great! I have such a problem with nausea that I often take Gravol before bed. Sometimes 2!!I sleep great and don’t feel groggy the next day.0
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The first time I took benadryl was in nursing school. I was studying and I wanted to go to bed early for a test the next day. Well I took it while studying and woke up during the middle of the night with a puddle of drool on my book. That's why I didn't mention it lol. But yes, of course. In the hospital I know many doctors are shying away from prescribing benadryl, and gravol as off label sleep aids especially for the elderly as they have potent anti cholergenic effects.
Melatonin is often prescribed but I've seen it work in about half the people that take it. It works for me. But if you're struggling to sleep and benadryl and gravol don't mix negatively with your meds I'd say take a small dose and see. Just be careful when standing up and see if it makes you dizzy1 -
Hello all. Just wanted to say that in our family, “fluffing” is another word for breaking wind, so I found some of that quite amusing.
@Taita Thank you so very much for the work you did on behalf of us all. It paid off, and women with OC will benefit from it.@JoanEG. I am so sorry you had all those problems. I hope you have told your team about it so they can give you something you can take to prevent it happening again.
Love all the grandchild pics. I have eight, from 28 down to 8 yr old twins. I have no recent pics of all of them. The youngest four live in Vancouver, and we see them in the summer when they come and camp in our garden. The four oldest are grown up and so busy with school and work. But we stay in touch via messenger. It always amazes me that these wonderful human beings came about because of me. I think we will be putting up the tree this weekend. So I have a day to clean and tidy the living room.
@Strongwoman. So glad you had a great time with your gf, and sorry to hear you are having problems now. I look forward to hearing of them resolved.
I take zopiclone. I hate being awake in the middle of the night. Thats when the rabbit holes appear and beckon me down them. I go to bed early because thats when I am very tired, but I really don’t need that much sleep. I only take half a pill, so I could take the other half but my NP does not want me to. I don’t know why because I am already addicted to them. My husband calls me his little dope addict ( in an affectionate way of course) I am always happy when the sky lightens. Today we are getting clear skies and sun on the wet coast, and I am hoping to get out for a nice walk and look at the sea and the mountains on the mainland.Have a great weekend, teal sisters, you are all always in my prayers.2 -
@GloHo @Taita @JoanEG Thank you for sharing the pics! So nice to see the bright faces of those younger. All of them put a smile on my face.
@melissa Thank you for your input and hope you are slowly gaining strength so you can go out and enjoy again!
To those looking for remedies for sleep. Wish you the best for what is best for you!
Have a wonderful weekend!
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Went for my first follow up with the oncologist after week 3 of weekly Paclitaxel. I will be receiving treatment every week with no break unless a break is requested or required. No surprises in WBC - which is better than I had anticipated (especially neutrophils, platelets and liver enzymes).My CA125 went up by only 1!!! I am happy that there wasn’t a significant rise. Amazing how much better I feel after getting that result. I was pretty stressed this time - I think that may be normal when you start a new treatment and more so at this stage of my journey. In any case, my reduced stress level will definitely be a positive for getting through this holiday season!I will see my oncologist again early in the new year. In the meantime, I will continue to have blood draws at my local chemo clinic prior to each treatment. If anything comes up, the oncologists at the clinic are available to deal with it and can consult with my oncologist directly, if needed.My main side effect seems to be fatigue. After my 4th infusion yesterday, I slept throughout the evening (at least 3 hours!), in addition to my usual in-chair nap during treatment. So, needless to say, I had difficulty falling asleep last night (haha)!!My dexamethasone effects this round are flushed face and improved appetite. Not experiencing higher energy level (dang!). Not sure if that is a result of only receiving Dex infusion immediately prior to treatment versus the oral route of Dex before and after treatment like I had previously. I don’t think I can attribute the Dex infusion to trouble getting to sleep last night, and will keep an eye out for the potential of insomnia in the future.@Taita
If you don’t mind sharing…
How was your experience with weekly Paclitaxel? How long did you receive treatment? Did it affect your bloodwork? How did your CA125 results go? You mentioned you are receiving Leparga. Was that a result of Paclitaxel or had you been receiving it prior? You also mentioned some kidney issues - from weekly Paclitaxel or previous? Did you have hair thinning or loss? When did it start?@jmbarrhaven
Sleep aids…after a bit of research…Gravol is out because there is a caution for those with liver issues. Benadryl/alternate is a possibility. The best option, with potential to support white blood cell counts and therefore may help protect against neutropenia, is Chamomile. I am sure that Gravol and Benadryl would be ok given that I would take them at a much-reduced dose but, for me, I think Chamomile will be my first option to try as a sleep aid. Of course, because I forgot to add this question to the list for my oncologist, I didn’t ask her about these options - brain fog!! I will call nursing triage and run it by them just to confirm that Chamomile would be the best option for me to start with.Thanks to everyone for listening and offering so much support!!2 -
@GloHo It sounds like you had more positive news than you may have expected. That is great. It sounds like it has changed your train of thought and feelings as well. It is so difficult as we go through things and the mind play that occurs in our heads along with it. I find that I can hope for a positive outcome but my brain still holds this area of disbelief/negativity that doesn't leave until I hear the news/results from the Oncologist. I can keep myself as busy as I want and think of other things but it still stays there, slightly, hanging like a small dark space. This news looks like it has lifted your spirits to enjoy the holidays fully. I am so happy and Thankful you will be able to do that.
You may want to ask about Zoplicone for a sleep aide when you speak to the Omcologist. Starting with a low dose for sure. It is not like the other sleep aides that cause brain fog etc in the morning and is not dependent on time of night you take it. I find all it does is allows me not to concentrate. For example, if I am reading, it makes me not absorb the words anymore. That is when I put the boom down and shut out the light. It doesn't give you a dopey sleepy feeling. No hangover effects in the morning either. If you aren't ready for something like that now, it may be worth asking about so you have the info and can make a decision later if needed. Hope that helps.
You go enjoy and get all the rest you need!0 -
@Strongwoman
Thanks for the suggestion - it’s now on my list. So true about those dark places in our minds! I am normally quite positive…but sometimes you just go to the dark side!! I think it helps me work through the what-ifs and next steps…but I try not dwell in that space too long. Usually when I am dealing with fatigue, I like to think that it is my body working harder with the meds to gain some control/lessen the cancer. That also rationalizes the sleep…body needs it to keep fighting!! Thanks for your continued support and understanding!0 -
Hi Everyone…I just have to share my good news. My oldest grandson passed all his nursing finals, in his first term, and not only that, but he got engaged last night to his girlfriend. We like her. She seems perfect for him. So, a wedding to look forward to, and stay alive for….0
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@Hooodith What wonderful news to receive! Thank you for sharing with the group. I feel like we are embracing these moments with you and can feel the enthusiasm and happiness it brings. Truly wonderful for you and definitely....you set that goal post further!
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@GloHo
I was on weekly Paxitaxil for just over a year combined with Avastin. I tolerated it quite well for the most part. My WBC’s were a problem so I started on Lapelga about a third of the way through and I am still on it with Topeocan. I expect to be on it until I run out of treatments. My kidneys were fine on it.Right now All of the paracentesis and the Topeocan annoy them but they are okay. When I go back on the carboplatin they will have to be better but we will cross that bridge when we come to it.Lost my hair on it. (Again). My CA125 was pretty stable until towards the end and of the treatment time. I understand about one year is average. Good luck!!I echo @Strongwoman on the
Zoplicone. They stuff is amazing. I am on 5mg when I need it and there are no side effects or grogginess.I am having weekly paracentesis now. 5.5 litres today after a very rough weekend but this afternoon is better and tomorrow will be even better.Congratulations on the graduation and engagement. Love to hear good news!!2 -
@Taita
Thanks so much for your response!! I am getting only Paclitaxel but I want to speak to my oncologist about adding another drug for combo treatment. I have a list of some drugs that are used with Paclitaxel but Avastin wasn’t there so I’ll add it.
I have not had ascites yet. In one of my earlier scans there was a note about mild ascites but nothing since then. When did your ascites start?0 -
@GloHo
i had ascities at the beginning prior to my surgery in March 2020. Since then I have had a few bouts but this is by far the worst. Given my CA 125 dropped from 1600 to 480 it would seem to be working but it doesn’t seem to take care of the ascities so far. Treatment usually does. We will see when I see my oncologist on the 29th. I hope you never get ascities. It is debilitating.0
