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!
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
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Well ladies it’s 2:44 and time to say goodbye. Nice of Strongwoman to suggest keeping the chat going. Unfortunately even with extending the time she wasn’t able to join.We haven’t had much in the way of part of our members of late and going to put my head to what might be some options for us. In the meantime enjoy the hot weather. Might be coo much for some of you but I love it. Cheers for now …..
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@babs272 So happy to hear your good news!!I will probably be checking my CT results before my telephone appt with my oncogist next week to review the scan. My CA125 is at an all-time high for me…get tested at the beginning of each cycle. Immunotherapy works differently than chemo so I am cautiously optimistic that it will turn around. Since I am not getting full dose and only 4 out of 5 days each cycle…hoping that’s enough.0
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@Fearless_Moderator I think you missed an earlier post. Ebbs and flows as to where people are at and it being summer and other commitments for some or where they are at in their journey perhaps?
@babs272 That is wonderful news. How do you feel about it all? So great you can help out and at the same time spend some time with your grandkids.
@GloHo Sorry to hear about your rising levels and am right there with you on that one. Your optimism (even cautionary) is commendable. Look forward to hearing more about the immunotherapy and your results.1 -
Hi all, its been awhile and I have been having difficulty coordinating for this time. I have been back from our trip to the UK/Ireland and it went very well. Also back and forth between Hamilton and Ottawa. My CT scan was very good and I am not experiencing any disease symptoms just treatment leftovers. CA is up though so cancer is 'regrouping' for another round. Last year I was ok for about 3.5 months and then the symptoms increased to pain. But for now I even have some hair, brows and lashes for the summer
I will be enjoying the month of July and then back to the oncologist Aug 2 to discuss whether I need to resume treatment or perhaps have a treatment free summer. I am also exploring Artistry 7 but on hold for as long as I am getting good results on Taxol/Avastin.
All for now I will try and join at the correct day and time next week!1 -
I also have a hard time with the day and time for chat. I try to get on to say how I am doing but cannot stay for the hour. I am in BC so chat is 10-11am for me.
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Missed thurs chat again. Well back on chemo now. Not been very well. Stomach been giving me some issues. I gpt to look at my recent ct with the delayed contrast so they can see whats going on with my kidneys. Ok that seems ok according to the radiologist. But what i did find out is according to my my recent ct and abdominal ultraspund. Which i might add dr in hospital said oh everything good. Like hell no not from what i read on my health portal. With all my bit of delays since april i now have mild ascites next to my liver and their also saying i have early cirrhosis. And on top of it i also have developed small ascites in my pelvic area. Also my tumors in my upper left quadrant the lrg nodule has increased in size. From 8mm now back up to 12. And the cannot tell accurately the size of my lower nodules in my pericolic because of the ascites. But they say other than that appearance seem overall stable.
Make no wonder ive been having stomach issues. My feet ankles and back calves since getting out of hosp. Been swelling up more than normal my stomach bloated up the day before i got out of hospital. Have calmed down a great deal since. Had my meeting with my oncologist we went over my symtoms concerns etc. He said all the more reason to get u nack on track with chemo. But in meantime if swelling gets worse in stomach give them a call and they will order a ultrasound to check on fluid level. Didnt get my avastan this trip around protien levels too high got to do those 24 hr urine sample again. Been dealing with what im assuming can only be symptoms of my liver cirrhosis. Pale stool feeling nausua fluid built up. Slight fever. So i mentioned that as well to my nurse and oncologist team. I tried to contact my dr only to find they only answer phs till 1pm today. But what the hey it was only 1230pm when i called him. My oncologist told me that its my family dr that refers u to palliative care. I thought it was the oncologist. So got to wait till monday now. So overall been not a very good month for me not doing well
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@mjmck21
Welcome back. Sounds like you had a great vacation!! Happy to hear your last CT was good, you are pain-free and your treatment symptoms sound like they may be diminishing and you are managing well. Hope to run into you in a Zoom room sometime soon. (I missed one yesterday that you may have attended...lost track of days, weeks...etc.). Glad to hear Taxol/Avastin has been working for you. Good idea to stay the course...especially if they are working! I have been chronicling my Artistry 7 clinical trial journey (if you type "artistry" in the search box, it should show a "clinical trials" discussion). It has certainly been eventful for me. But, that's me 😁!! I seem to be hypersensitive to drugs...from over-the-counter meds to immunotherapy...so, some bumps along the way. I just completed Cycle 3...I'm waiting for my CT results and a discussion with the oncologist next week before I add my Cycle 3 update. Glad to have you back. Have a great weekend.
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@Eileen
Maybe the chemo will help relieve the ascites for you too. Now that you know about your early-stage cirrhosis...hopefully, you can get focussing on that. I'm not sure what that entails, I have not yet had those issues, although my liver enzymes have been bouncing up and down with the immunotherapy drugs I have been getting and I have been thinking about what that may be doing to my liver. I am going to bring it up at my next oncologist appointment. I want to get ahead of it if it's going to cause issues later. I, too, find it confusing to determine whether I should contact my GP or my ONC for health issues. Sounds like you are doing everything right and your cancer is stable...I would be interested in hearing what advice you get regarding your cirrhosis. You always shoot from the hip...so, I know you'll let us know how things go. Sending positive vibes your way. Have a great weekend.0 -
Well ladies I am suggesting possibly two a week. One earlier in the week Mon/Tues and then the Thurs One. Can always keep the Thurs time and make the one earlier in the week a different time of day from late afternoon until 7pm.....in that time frame what do you think may work? Any thoughts on this or make the one that is later in the day every other week? This is just brainstorming out loud and by no means sent but this is your platform too so voice your thoughts. Other details I am sure can be worked out.
@mjmck21 I am so happy that you got away, enjoyed it and are busy currently with other 'stuff'. I am excited for you and where you are with your treatments. It is always good to look at our options esp when we aren't in treatment. I feel this makes us feel like we have a plan should something change.
@Babs272 I bet that is a tough time for you to make the meetings. Any plans for the weekend?
@GloHo I have very much enjoyed reading your posts even though it's not the type I have. I am learning lots so thank you for being open and sharing. Thank you also for all your words of encouragement to our Teal gals.
@Eileen Girl, you are having a tough go, aren't you? Good for you for sticking with your gut as it has proved to be correct as per the CT scan. I think they sometimes forget how "in tune" we are with our bodies.
Ascites is hard and difficult to process as well. I am glad you were given direction as to what might be 'normal' versus a need to be seen by someone. That is very important to know. I am so sorry you are experiencing such a difficult time as I feel you have been through a lot lately. My thoughts go out to you.
Any plans for the weekend ladies?
I picked up 3 more pottery pieces to paint for my Legacy work I am doing. I am getting there. I may have only 2 more to paint after this and will be done. Then on to the writing portion of my Legacy work.0 -
Ty @GloHo. I did originally had mild ascities my my lower abdomen. When i first was diagnosed and chemo did help. The oncologist i saw was one of my oncologist team member i never met before. All he said was my liver enzymes are a bit high and i shouldnt worry to much about it. Wow my alkaline phosphate is like in the high 200. He never even went into detail about strategies to help with my liver when i spoke to him about it. Just told me to watch my sodium intake for my swelling of my feet ankles and back calves. Like ive already been doing that i told him. But i going to take to my gp. I know that i had only mild fatty liver. For about almost a yr now. My oncologist said yes that was due to chemo. When i went on a break before going on my 2nd regiment of chemo after the maintenance didnt work, i had the mild fatty liver back then too, but it got better,only to come back. And now this. Its hard to swallow. All this chemo.0
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Hello! I don't think I will be on for 1pm today. I am headed out shortly to go create a windchime from raw clay for my parents and 2 other of the ladies from my palliative group are joining me. It is my Legacy project for my parents from me. They are going to hard fire it so they can keep it outside all year round. I will be making one for hubby as well but on a different date.
I had a other pain crisis that started Tues and we got on top of it right away so seems to have subsided but have port in still just in case. Lots more for me to say but I have to get ready to go pick up the first lady.
For those that can't make the 1pm today, I will jump on when I am home and if anyone wants to join in then, they are more than welcome.
Talk soon1 -
Hello Ladies…sorry for not attending the chat regularly, although I do catch up on the conversations later. I too struggle with the time of the chat, so interesting to see some other suggested options. I’d be open to the later time.
@Strongwoman, glad that your pain crisis has subsided. You continue to inspire me - not just by the way you handle living with our condition, but also by your creativity and commitment to your legacy projects. The clay wind chime sounds lovely.
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I will not be here today. I have a few appointments today , as well as chemo this afternoon.I hope everyone is managing ok. Be strong and keep moving forward. I do try to stay positive myself these days. Enjoy the sunshine!
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Welcome this Thursday July 13. It seems much activity pre the chat time so I'll work through those, along with engaging in our ongoing chat if anyone has been able to join in.
So for those who are online , please say hello and let us know what's on your mind today?
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Good afternoon everyone. Sorry I have not been participating the last few weeks but it has been one thing after another (not always to do with OC). My pacitaxel and Avastin stopped working and as of four weeks ago I have been on gemcitabine (two weeks on and one off). Tolerating it very well. In the meantime I have had two ascites drains (3.4l and 3l). I am still really bloated and have lots of fluid but it isn't bothering my breathing which was the main issue. It still plays havoc with my bowels and my ability to eat more than a few bites at a time but hopefully after a few rounds of chemo this will settle down. (The OC said it could just be the disease - God I hope not! So uncomfortable!)
Some good news...... since I have been off the paxitacel and avastin my tastebuds are almost back to normal and I love food again and cooking! So hopefully I will put the weight back on that I have lost. The ascites makes it seem like I haven't lost any weight but for each litre of fluid it represents 2.2lbs so there's that.
I have insomnia for some reason. I would only take a sleeping pill the night I had my chemo and the steroid. Now it seems every night. Apparently the Gem makes you sleepy so its not that. Anyone else have this issue? I wonder if it is just the uncomfortableness of my abdomen.
Anyways, seeing I had progression we moved our family trip to Disney up from March 2024 to next month. Why wait. When the 25 year old grandchildren heard we were going they wanted in, so now we are all officially booked! It will be HOT so my daughter arranged scooters for my husband and I delivered straight to the hotel and we have them for the whole time. Will make a huge difference. Little Amira will be a bit overwhelmed but she has her princess dresses ready. LOL!
Enough of my update, how is everyone doing?0 -
Hi @Taita. So happy you're able to join in today. You sound very "up" despite some glitches. The food thing is a good/bad scenerio isn't it. Great taste buds but not able to consume the amounts you'd like. I don't think the Gem is at fault, at least from my own experience. I've had Gem for every round of treatment over the past 7 years and for me I had little to no side effects from it.
How exciting to be accelerating your trip to Disneyworld. Your daughter should get a job in travel. Wow, scooters for you and hubby. She thinks of everything. And from past experience with the heat at this time of year you'll be invaluable. Hope your hotel has a pool you can dunk into to stave off the heat as well. Maybe a swim up bar????? Fantastic though to see all the generations joining you.
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Hi
Well, after a year of unsuccessful treatments, I now have a "stable" diagnosis!! YAY! However, for the last week, I have been sitting on the edge of my chair because there was some question as to whether or not I would be able to continue in the trial due to my blood work. After the 4th day of treatment in my last cycle, my neutrophils were down and my liver enzymes were up. There is usually one or the other that causes the treatment to stop at day 4 - I haven't had both causing an issue since my first cycle. I just spoke with my oncologist and because there is stability and a very slight reduction in a couple of the lesions, the trial board has agreed to let me continue. We will, of course, keep a close eye on blood work, but it seems that even getting only 4 out of 5 treatments of immunotherapy is showing positive results for me.
I am very frustrated because I keep asking if there is anything they can do or I can take to help my body out during treatment. I am not chronic, but I sure am consistent (definitely drug-induced adverse reaction). For some reason, they will do something re neutrophils if you are receiving chemotherapy, but they do not recommend anything for immunotherapy. I still don't understand this (it was a telephone call with the oncologist today so I didn't want to hold her up from the patients I know are waiting for her at the clinic) and I am going to have to find out why nothing can or will be done when you're receiving immunotherapy.
My next cycle is next week...so we'll see how it goes.1 -
@Fearless_Moderator
Yes, we are very lucky to be all together. I think if my daughter gets burnt out in her profession as a Family lawyer, travel may be her next go to! She is excellent and I like to think she inherited some of it from her mother "the world's best organizer" as my family called me. HaHa!! Not so much anymore I leave the details to the young ones!
How has your summer been going? Has your son been home again? I assume your husband is back at the winery. Beautiful place to be in the summer for sure.
I have a question for anyone in the group. My ascites is pushing everything around including helping my calfs, ankles and sometimes legs swell. I am using compression socks but they have their own issues. Has anyone taken diuretics for the swelling? My nurses think it would help, but my oncologist says it won't. Next stop is family doctor. Thoughts?
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Hi @GloHo What wonderful news. I'm back with progression again and would kill to get a stable report. Next CT for me is next week so wish me luck. For you it seems the immunotherapy trial is having a positive effect so I do hope you're able to stay the trial full course.
I'm not clear on you comment about treatment for those in immunotherapy. Perhaps you referenced it in an earlier comment? Could you elaborate?0 -
Hi everyone, I'm joining now too. It's more off than on for me in terms of when I can join on Thursdays but this is definitely summer related.0
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@Fearless_Moderator
Like I said, I don't understand it yet...so my description is probably not the best. When I spoke to my Oncologist this morning about getting an injection or something to fortify my neutrophils, she said that they do it for patients receiving chemo but not immno. Very frustrating and confusing. So, I have just heard this myself and have a little research to do...and I am not leaving the Oncologist appointment on Monday until I am satisfied as to why this is the case. 😁1 -
@babs272
Good luck with chemo this afternoon. Stay strong gal and hopefully you can join us next time.
@Tinazzie
It's so nice to hear from you again. I'm not sure adjusting the time of the chat will work favorably for all. This time is selected to accommodate gals in all the time zones. But yes I'm looking into what might be favorable for all.
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@GloHo
Wow, I'm surprised they can treat the neutrophil issue for those in chemo and not those in immunotherapy. Perhaps it's not the immunotherapy but that you're in a trial? Regardless you're right to ask for a more fulsome answer to your question. I"ll be looking forward to hearing the outcome of your enquiry.0 -
@Taita ascites was and has the worst impact on me. Though now it usually appears in my pleural cavity (pleural effusion) rather than abdomen and so far chemo has had immediate effect for which I am grateful. I find it so frightening and painful that chemo side effects are preferable at this point. But I see this will change once Taxol no longer works for me as well. When I was diagnosed in emerg in 2021 two things happened. They drained the cavity and it offered immediate relief. While waiting for the oncology appointment it built up again and another emerg doc gave me a scrip for diuretics. When I saw my oncologist first time she told me to stop the diuretics but did not offer a reason at that time. So there is something about diuretics. I would like to know as well. Unfortunately the effusion is inter-loculated. Not sure if I spelled that correctly. Anyway little pockets so they were unable to drain it the second time. I really hope there is something they can do when I get to this phase again, I'm feeling really good right now but can also feel some twinges in my chest and abdomen that signal that its on the rebound again and will start up chemo again soon.0
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@Fearless_Moderator
I know, right?!! I didn't get the sense that it was trial-related but it did cross my mind as well. My poor oncologist has some explaining to do! (haha) I hope I get a good sleep the night before so I can process what she tells me...otherwise, we are in for lengthy chat. I'm hoping I can find something online that may help me direct some questions her way about this.0 -
@GloHo so glad to hear of your progress!!! Don't you just love that word "stable". I will connect with the team on ARTISTRY 7 once I am back in Hamilton next month but I have some questions - only if you feel like answering, about some logistics and side effects. Do you really spend all day at the hospital (8-5) and do the pre meds involve steroids and benadryl each day? In other words are those days right offs and are you pretty much in bed/chair during that time. For The rest of the week and the following two. How are you feeling in terms of mobility, energy, strength etc. And has there been and word on how long this regime continues. Thank you.0
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Thanks @Fearless_Moderator. I'm behind so seeing this now that we are finished. I'm doing well, on a treatment break and making the most of July. I returned from my overseas trip and the CT scan showed I was stable so they said, take another month! I feel better each day though as mentioned some twinges indicate that there may be some activity in my left abdomen. At least that is how it felt last year when I recurred.0
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Hello Ladies
Lots going on for sure.
Later then what I thought but all 3 of us completed our projects and even had a little snack to get a bit more energy to finish. We received great instructions and encouragement while we diligently worked on our projects. When we went to pay, we were informed the owner had "gifted" the day to us as he knew why we were doing the projects. No wonder he ducked out before we were done. So we left with tears in our eyes from the generosity, kindness and empathy the owner gave us. There are truly kind and wonderful people out there!
So now it gets hard fired, we paint or glaze and then put it together. Fun and exhausting day all at the same time!
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