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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@JoanEG Thanks, I have tried different CBD oils for pain, with disappointing results. We have a cannabis store here so I am going to ask about that particular product. I don’t really trust the medical world on the subject. There Is too much politics involved. One of my kids has been at the centre of the cannabis culture here ( Hemp BC ) for the last 25 yrs and keeps me fully informed of the way it has all been mishandled to the detriment of people who need it for medical reasons, among others. Its a pretty scary story.1
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@Hooodith Thank you for your question and I have an answer for you.
We are all respectful on this site. In saying something about spirituality, it is fair to say we are not all on the same path and may have differing views and beliefs. This is good as it may let us view things in different lights. As long as everyone is respectful and kind regarding any comments on spirituality, it is allowed. I hope that answers your question.
If anyone has any further questions/concerns regarding this, kindly direct them to myself. I feel we are a group that is open to different lights especially where we might be on our journeys.1 -
@Strongwoman. Thanks for this response, which I wholeheartedly agree with.0
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@Hooodith I am doing really well thank you. I definitely had some issues over the weekend but I think that was mainly due to my not knowing what was “normal” following a round of chemo and what was an indication something was wrong. I called the nurse on Monday morning and got it figured out. I could not sleep, at all! I either had to pee every 20 minutes or I was flip flopping like a fish because my hips ached. I had to pee constantly for the first two days! I also had terrible heartburn. All attributable to the dex. Go figure! 🤦♀️. I have been a little nauseous but I’m not shy about taking the metachlopramide and it is working well. Thank you for checking on me and I hope you have been able to find some answers regarding the use of cannabis for your pain.1
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@Strongwoman, it was great to “see” you at the OCC conference last night! Your story, resilience, and compassionate energy are so inspiring!2
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Welcome Ladies to our Teal Thursday chat.
How many of you were able to join the Symposium live?
Who is watching it later?
How is everyone doing?
How has the week been?
Anything you want to chat about?
We lost another of our fellow friends in my Hospice group. He passed away a night ago. It is sad to see him go and no he will be at peace. I do recall him looking at me in the group and saying, "One thing I know for sure, it will be a sad sad day when I come and you aren't here." Well the funny thing is....that is how I feel about him not being there.
Anyhow, I am off to a mammogram later this afternoon.
Weather here in Ontario has been weird and not very stable.
Well Ladies, the hour (of course you know beyond as well
) Is yours. Come chat and share! 1 -
Oh yes, I almost forgot and should not have!
How do you like the NEW look of our homepage? Any comments are welcomed.
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It! 0 -
Thank you @Tinazzie! Glad you enjoyed it. Hope it has inspired a bit too.
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Hi everyone. Well, my time in the trial has come to an end. There was definite progression shown in my most current CT scan and my CA125 numbers have been rising slightly over the last couple of tests. I am down to my last three standard of care treatment options: weekly Paclitaxel, Gemcitabine, Topotecan. I am researching to see if there are drugs that can be combined with these to increase efficacy/tolerance. I will begin my weekly Paclitaxel treatments in a couple of weeks.
Mentally, I have been a basketcase since Monday. I had my first real cry today...so starting to accept where I'm at in my journey. It is very difficult not knowing how long each of the drugs may give me...but I will soldier on.
Physically, I have felt some intermittent pain, but I am essentially pain-free right now and pretty healthy otherwise. The oncologist did indicate that my cancer is close to my bowel now...so, I guess blockages are in my future!! Has anyone had or know about bowel stents? Just wondering if it is something I should consider? I am going to raise it when I see my oncologist.
I have been losing weight and am keeping an eye on that. My appetite has not been normal for quite awhile now and I have not been doing a lot of evening snacking over the last month or so. It was never easy for me to lose weight, so I'm pretty sure it is cancer-related. I have been pretty good at getting on the treadmill for 30 minutes at least 5 days in the week.
@Strongwoman
I am looking forward to viewing the symposium later. My oncologist was not supportive of my turkey tail tea request. Expected since I am still in treatment…just thought I’d throw it in there to see what she said. Testing her.
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@GloHo Decisions....so difficult. I am glad you had a good cry. It is a release and is healing in many ways. It will take some time to process. I know it took me quite awhile. It is not easy and that is ok.
If you want to share, what did you oncologist say about the turkey tail tea? If you don't want, all good.
I hear you on the losing weight thing. Unlike you though, I have been snacking at night and am still losing. My palliative doctor said whipped cream is good as it has a high amount of fat in it as well as ice cream. Who knew a remedy from a doctor would be "have some whipped cream".
I don't know about bowel stents. If they are bad enough and if operable, they can take a portion of the bowel out and re-attach it, more commonly known as an anastamose. I had this done in my primary surgery. If they are unable to attach, then that is when the ostomy comes in to play. Anyone can weigh in here on this topic...share experiences.
Good for you with your exercise as well. Keep up the great work. I know you will find something to try soon.0 -
I participated in the symposium. The new vision and messaging from Ovarian Cancer Canada was surprising and uplifting. They seem to be sending a strong message that they feel the research over the last 4 years has convinced them that ovarian cancer can be beaten. I also thought it was very encouraging when one of the scientists said that ovarian cancer research has a lot of momentum right now and that she found it very exciting to be a part of it.
It was a very welcome message since I met with an oncologist this week to find out if I was going to have my 6th chemo. A recent CT scan show my tumors are small, but still present. I wanted to know if by having another one I could reach NED. She said no. My poor kidney function is also an issue. When I told her that I was mentally prepared for another one and that I felt that this was my last chance to keep the tumors small, she said she would talk to the pharmacist. When she returned, she said they agreed to 2 more, with each at 50% using the new platinum drug for the one I developed an allergy to. So that was we're doing. Fingers crossed.
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@jmbarrhaven That is great news about where the research is going. I think this would apply to mainly HGSC as most of the research has been there. It would be great if it were all of them but....we will take what we can get and have small successes!
How do you feel about the news? How are you handling it? What is going on with your kidneys and what state are they in? What have they said about what treatment you may be headed in for them?
I will keep my fingers crossed for you.0 -
I am here! Chemo was cancelled because of CT scan and bloodwork. I see the oncologists this afternoon and see whats going on. Maybe a new plan?
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Hello @babs272. You sound a little brighter than before about it all. Nice to see.
Let us know how you make out when you are ready to share.2 -
@Strongwoman the oncologist is going to refer me to a doctor of internal medicine to see if they can figure out what is causing it. She doesn't think it is just chem or Parpi. She got me thinking and I am wondering if prolonged use of naproxen might be behind it. In the 7 month lead up to my diagnosis in early 2021 one of the tumors was pressing on a nerve in my him with a terrible pain transferring down my leg. Taking naproxen twice a day for 7 months worked for pain, but may have had unintended consequences.
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Are most of us that are on the chat, stage 4? I am just curious.0
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@jmbarrhaven Good that she is being proactive and sending you on to an Internist. Do you feel good about it? Perhaps it is from the Naproxen. If so, is there an alternative for you? What damage may have been done to your kidneys or do you know? Any symptoms? How is the pain in your hip, still there or resolving? This disease is not one thing, it can manifest to other issues within the body.0
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@babs272 I don't have a classification. I was informed that once you recur, you recur. They don't restage it. I was diagnosed in 2021at Stage 3C. Does that help answer your question?0
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Okay ladies I have to run to my mammogram. Continue chatting and I will slip in when I can or catch up when I am done.
Take care all!1 -
@babs272 I am stage 3. @Strongwoman the original pain went away with surgery. However ongoing osteoarthritis make naproxen one of my go to medications for inflammation. I am also allergic to glycerin which is in a lot of pain medication. The only way I know I have kidney problems is through blood tests. It will be interesting to hear what the internist says.0
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@jmbarrhaven Thank you for explaining it to me, I appreciate it. Allergy to glycerin....that is in a lot of product, yes?
I am thankful you have a referral and will hopefully get some answers soon. Will hope the pain stays away too.0 -
@Strongwoman
She couldn’t talk about turkey tail specifically, but she went into seeing and hearing of bad interactions and even death with the use of herbal medicines during treatment. She specifically mentioned bad effects on the liver. I was ready for that one and said turkey tail was good for the liver (however I did read somewhere that there was some liver dysfunction but specific cause (chemo or turkey tail) couldn’t be determined). Like I said…I wasn’t expecting an ok this time, just wanted to throw it out there. I was upset about my results and where I am headed…so didn’t feel like engaging in a long discussion on the subject. I still have a lot of research to do…especially around those cancer clinical trials that have been conducted with turkey tail mushroom. The next time I ask, I will be prepared to argue my case. There are so many “herbal medicines”that we already use in our everyday lives and most of them come with cautions too. Also used in Chinese medicine, including oncology. Lots to explore.0 -
@GloHo You are so right about that. Sometimes I feel it may be a quick answer for information they aren't up on. Could be wrong but it is a train of thought. I am on the "trying it" band wagon and will let you know how it goes as time chugs along.
Good for you and you process what you need to. Your research will prove something fruitful for you0 -
@Strongwoman
If nothing else…the research will be a distraction and keep my mind moving forward in a positive way.1 -
Good stuff @GloHo0
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Hi everyone. @Strongwoman thank you so much for your moving presentation last night. I have been thinking of what form my legacy project will take. I have a very close and large family. I would like to leave a message for each of them. I will take some time to think about it. It’s important and it will be time consuming. Some of course will require something very explicit. My daughter and son, my four grandchildren and my four great grandchildren. I’m thinking of video messages including music. Dance parties and song are a huge part of our lives and the time we spend together. Thank you for making me think. ❤️0
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@JoanEG Thank you. I was humbled by the messages coming in last night.
I am thankful that my presentation was impactful and that you are moved to think about your own Legacy. Take your time with it, start out with one and go from there. You will be surprised what evolves. Due to the different mediums I work with I hop between projects which is good for me and my body. You will find what works for you too. I am here to help in any way I can if you need anything.
Take care1 -
@Strongwoman thank you. You know, so far, I haven’t even asked how much time I might have. I am still operating under the belief that I will be “cured” I need to wrap my head around a shift in thinking. I know that recurrence is likely but I guess at this point I just want to stay focused on getting through chemo and surgery. It’s hard to face our own mortality isn’t it?1
