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!
Let's get started! Come and introduce yourself
Comments
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Yes, @oldmaster..I agree with @CurlyHair comments - perhaps the new DR or GP can help advocate and look at the options for you. Do they have a team approach there which is similar in other provinces? I see you are in Quebec and do you have access to a local support group also?
Here is a link from the main site:
http://ovariancanada.org/Events-Support/Find-Local-Support-Groups
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Hello @liesel... welcome and thank you for sharing your experiences. Yes, I find that the support of in person and online access helps as we struggle with the upcoming appointments/treatment/decisions. And if you are interested in the local in person group - I think they still meet at Tom Baker Centre - more info here:
http://ovariancanada.org/Events-Support/Find-Local-Support-Groups
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Thanks @Flowergirl ! I was a member of that support group for a short while.0
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Thank you Flowergirl, I had to sign off from my gp. I have just started with my new dr and I do believe that she will be of more help. There is no group near where I live but I will follow up with the web site that you sent me. Everything is different in Quebec. Thank you so much for your help. I am so happy to have found this group. It helps just to share with others living with o.c.
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Hello @oldmaster. Welcome to OVdialogue! You have been through a lot like so many other women but @CurlyHair is right, you are the one to determine your quality of life - how you are feeling, what enjoyment you have in life, what you would still like to do. Just because you are now being seen by the palliative care team, it does not necessarily mean that you can no longer receive active treatment. Palliative care often means increased help and support to deal with any side effects of treatment and/or symptoms of the disease as well as increased support for your family. But treatment could still be available if there are other drugs they could try and you want to do that. Has the doctor said there are no more drug options? Do you want to try other drugs if available? Are you/were you being seen by a medical oncologist? How are you reacting to all this?0
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Hi @liesel. Welcome to OVdialogue! You have had a long road and it is amazing that you have been working through it all for 7 years! Wow. I'm sure it was a great distraction for you and perhaps kept you going during some of the rough times. Waiting for appointments, follow up and tests results IS anxiety producing, no doubt about it. A lot of women talk about how hard this is and I think you will find lots of comments about it on this site. I'd like to direct you to the discussion on anxiety if you haven't already found it. Perhaps there are some people you can relate to and connect with directly. Also the discussion on recurrence.
https://ovdialogue.ovariancanada.org/en/discussion/33/anxiety/p1
https://ovdialogue.ovariancanada.org/en/discussion/48/recurrence/p1
What do you find helpful when waiting for tests or appointments?0 -
Hi @oldmaster and @CurlyHair. Just a little tip.... if you use the "@" symbol before the person's name, they will get a notification that someone has mentioned them so they may see the post more quickly....0
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Thank you Marilyn, it sounds like you have put a great deal of thought after reading my posting. After my last scan my oncologist said I could start palliative care or another round of treatment but that the last scan showed to improvement at all. I started another round of chemo and I had three treatments before seeing my oncologist. He offered palliative care again and my pivot nurse called and was more clear about my options. She told me that I was was getting weaker and not better. She said that many women were able to gain some strength when stopping chemo. I was also being seen by a pain doctor and she also suggested palliative care. All of my files were sent to my new team and I also had to sign off from my gp. I have only seen my palliative doctor once and I will see her again on Monday. Over the last four years I feel that I have taken everything offered. I also had genetic t sting and I tested negative. I would really like to feel stronger. Cathy1
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Hi @oldmaster. It sounds like you have given this lots of thought and listened to the team around you to make the best decision for you so that you can feel stronger and that you want to live each day as best you can. Im glad that you have your family and friends around you and that you feel their support. The women in this community are here for you too and you may have some great insights to share with them too! You might find the discussion on recurrence helpful too.....
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That is a great comment @oldmaster - thank you for that. I've decided to try, look for and celebrate all the good things / feelings / times, etc. as all that is worth celebrating. Also, it may just help produce a smile!0
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I hope you are feeling better about the switch over to the new doctor @oldmaster and you are doing ok today0
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Thank you @flowergirl, I now have a wonderful dedicated palliative care team now.. I hope you had a wonderful Christmas as I did.
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Hi @oldmaster - I'm glad you had a wonderful Christmas! yes, it was nice to celebrate the season... hoping you are doing well today.0
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Hello, I'm new to all this. I picked the long weekend to finally give into the pain. I was grasping for it to be anything but this but I lost my sister to this in 2014. Everything is delayed because on the New Years weekend but my cr125 test will be sent to the city on Tuesday and my pelvic ultrasound should be this week. I live alone with my assorted rescue critters, leaving them, having to rehome them terrifies me. Can I manage their care and my own through all this uncertainty and treatments! I'm just so sad so scared. I curled into a ball on the examination table and cried.0
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Hello @lovemydogs... I'm sorry to hear you were in pain and just dealing with all of this now - this weekend. Welcome to the site and how are you now this evening? We are here to support you. I am also sorry if you were alone while in that exam and did the medical team offer supports and pain management for you? I can't quite tell from the message above and if you are still experiencing pain please do seek the ER or medical attention.0
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Hello @Flowergirl thank you for seeing my new arrival. They offered pain management but I have opted to wait until things start to happen. I live in a rural area and I am afraid of not getting the help soon. Really scared but no resources locally until Tuesday. I try to keep busy, I can't wait to get home to my dogs when I'm out but whenever I do get home, alone again, I get paralyzed with fear. It's been snowing for days and I have tried to keep up with the shovelling but today I'm gonna let it wait. It's to hard to shovel. And certainly not helping the pain. I'm gonna have to learn to stand up for myself and stay on top of the Doctors. I don't know that I can do this.0
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Hello @lovemydogs I welcome you to the blog. I totally agree with you that you must push your healthcare team and ask questions for yourself. I try to do that as well. Nothing wrong with asking. Please try to remain positive and hang with your dogs. They are probably a great help mentally. Try to have faith as well in your healthcare team in that they know what they will be dealing with. My oncologist has shown me patience through the actions. I try not to panic because I do not know. Just write questions down and go forward. Please feel free to ask any questions on this site because others can help out.1
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Hi @lovemydogs. Welcome to OVdialogue. You will find lots of conversations and other women who understand what you are going through like @Flowergirl and @CurlyHair. It seems that you are at the beginning of the diagnostic process, so the symptoms you are having may not be ovarian cancer. I understand your fear based on your family history and it is so hard to wait for results. You might want to go to the discussion on Anxiety and see those posts - people also post pictures of their pets, who do bring such comfort and joy, particularly during tough times. Hopefully, you will not have to wait too long for the ultrasound and results. It will be important to also let your doctor know of your fears and concerns about how you will manage and what resources are available to you.
It is now Wednesday, so perhaps you have some further information as of today?
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I never heard anything on Tuesday so I called my Doctors office. Well he is on vacation, swell. They told me things take a bit of time to get back on track after the holidays but assured me the ultrasound office would call me directly. Now we are buckling down for a serious winter storm. So trying to keep myself busy and distracted. Good thing though, they may have the blood work done around the same time.
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Hang in there @lovemydogs
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Hello - I live in Shaunavon, Saskatchewan and am new to this site; from all the information here I should have joined sooner. I was diagnosed in January of 2013, started chemo (Paclitaxel and Carboplatin) at the end of Feb/13, had 3 chemo's and then the debulking surgery, then 5 more rounds of chemo. My ca125 was very high before starting chemo - over 300,000. I responded well to chemo and turmor had almost disappeared when the surgery was done. I am now looking at my fourth re-occurance and it is even scarier than the others. With the others I was usually at or past the 9 month mark from chemo when my ca125 increased, this time I finished chemo (Caelyx & Carboplatin) on Sept. 14th/17, Oct. 11 my ca125 was 14, but on Dec. 20/17 it had increased to 449 and I have abdominal pain. I will have a ct scan in the next couple of weeks and tentatively scheduled to start chemo at the end of the month. My Dr has recommended to do the Paclitaxel again, but doing it once a week for three weeks and then a week off. This would be for 6 cycles as along as it is working and the side effects are tolerable. I am wondering if others have done this chemo drug at this schedule and if so how it effected you. Thanks for any help or advice you can provide.
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Hello @Venus - welcome to the site - thank you for sharing your story. You have been dealing with this for a while and we welcome all your experience and questions. From your notes it seems the medical team has a plan. You can scroll through the topics on the main page as there are some started about the chemotherapy medications. Participants have provided their experiences with those treatments. We hope you find lots of support here. The neuropathy in the toes is the side effect I still deal with.0
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Hello @quarryridge - welcome to the chat!0
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Hello, I'm from Ontario, I'm here on behalf of my mother who was diagnosed in July 2017 with high grade serous stage 3. She was also found to have the BRIP1 gene mutation. She is receiving neoadjuvant treatment; cheme-surgury-chemo. She's just had her 4th chemo. There seem to be both similarities and differences in treatment & maintenance medications so I would like to understand these variations more clearly and share in any knowledge I learn along the way.0
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Hello @Luci22 - Welcome to you and your mom! There are several topics on the chat and you are welcome to read through some of the previous topics on chemotherapy ,drug treatments, the BRCA posts and more.
Yes, there are many similarities and differences in treatment. I've found that the medical teams really have been taking a personalized approach and I suppose that is the way it should be. It is very helpful for everyone to share their experiences as it helps us understand the process and we are all better informed. Thank you again for joining the chat and hope you both find some good support here.
How is your mom feeling after the 4th chemo?0 -
Welcome @Jack to the site. We hope you find lots of good support here. There are many topics listed throughout the site (we are going on 3 pages now!) and you are welcome to tell your story here or on your personal log-in page.0
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Welcome @cavy to the site. You are welcome to tell your story here or on your personal log-in page.0
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@Flowergirl Hello & thanks for the welcome, I am new to this site and not yet familiar with navigating. I was diagnosed Apr 2017 and have completed treatment chemo, hysterectomy, debunking & more chemo. I am now being monitored every three months by gyno-oncology and back to living my life till.... I am also a member on cancerconnection.ca. The majority of women on that site are dealing with breast cancer. Jack 0
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Hello @Jack. Thank you for sharing your story and I am glad you are back to "living your life".
We hope you can find some good support here as new topics and discussions are added.0
