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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Comments
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@Strongwoman
I was going to ask about the portal. I like to be prepared too. 🤞
Enjoy your crepes and coffee and time with gf.0 -
I am just about 4 months into my second remission of HGS. They have estimated a 6 to 12 month break this time. I have been having 3 different types of stomach pain and have been increasingly worried that the cancer was back. One, a stabbing pain on my left side hip that I've had off and on for 2.5 years, since shortly after my initial surgery. I keep mentioning it to my oncology team and they keep dismissing it, but it keeps getting worse. Nothing shows up on CT scans. A second pain is along my right side ribs for several months. I've been getting this one treated by my physio (more below). The third pain I've only had for 2 weeks and is centered in the middle over my pubic area.
I see my amazing longtime physiotherapist/osteopath once a month. I saw her on Monday. I asked her for help on deciding if I needed to go to my GP to get further investigations or if she thinks they might be cancer related. She had already been helping me with the middle one which she said was caused by my muscles deteriorating so much after a year of severe anemia from ongoing chemotherapy for 2 cancers. The muscles weren't holding things in place and things were moving out of alignment. After describing the other 2 pains, she said they were both things she could treat with osteopathy. Again because of muscle deterioration and the void left by the hysterectomy things were moving and were putting pressure on nerves and other organs. She can move them back into a better position. Huge relief to me that it's likely not the cancer returning earlier than predicted. I don't know what I'd do without her expertise and whole body perspective. Why doesn't oncology know about this. It can't be unusual. They should be actively directing patients to physios and osteopathy. Just thought others might benefit from this info.
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Me too @Hooodith Time will tell and then I will tell all of you.
Yes, did anyone watch the eclipse and how was your experience with it?0 -
What would you like to ask me about the portal? I have my Palliative Day Group today from 10am-1pm and then my Oncology appt at 2pm. I will do my best to answer you but it will be more than likely when I return home this afternoon.GloHo said:@Strongwoman
I was going to ask about the portal. I like to be prepared too. 🤞
Enjoy your crepes and coffee and time with gf.
Crepes and coffee was good. As was the chatting that goes along with it. I had to be careful with my choice of food due to the low residue diet but I figured it out. Only ate half of it, declined the greens that come with it and ate the other half at dinner last night. Mine was a savoury one.
How are you making out with going ahead with the trial?0 -
Well @jmbarrhaven I will weigh in on your last statement after being in that realm of the health care field for over 29 years. There is and always be a big disconnect in care. No, it should not be that way. Many health care professionals are doing their best to bridge that gap but alas this will be a long term fix. When I was actively working as a RMT I ran into this a lot. I had some health care professionals that were open and would listen to what I had to say regarding a patient and others that would see me as a low person on the totem pole and not. It is due to some of this hierachy and egos that this occurs. I saw myself always as acting in the best interest of the client. I would go up against a lot of naysayers and if it was in the best interest of the patient, would fight for what they needed and make sure that I was being heard. I had good working relationships with many family physicians, physios, chiros, osteopaths, other RMT's and naturopaths. Some did not want that and that was fine too as I have big shoulders. It is my hope to one day see all of those health professionals, respecting one another, dropping the hierachy and egos and working collaboratively for the betterment of the patient. It is through self advocating on the patient's side of things that this works too. You can ask to sign releases to have one health care professional speak to another one. Sometimes, I would write a note for the patient with what I felt was going on so that they could take it to their family physician. I would not charge for the letter either. This was to foster good relationships and hopefully have the physician look at the info at hand and the patient to determine what next steps would be. There are things that can be done to help bridge the gap. Like I mentioned, it is going to be like going up a long slow incline of a hill before we get there. Be patient. Advocate where you can and present to your physicians what you can and hopefully they will listen to you.jmbarrhaven said:I am just about 4 months into my second remission of HGS. They have estimated a 6 to 12 month break this time. I have been having 3 different types of stomach pain and have been increasingly worried that the cancer was back. One, a stabbing pain on my left side hip that I've had off and on for 2.5 years, since shortly after my initial surgery. I keep mentioning it to my oncology team and they keep dismissing it, but it keeps getting worse. Nothing shows up on CT scans. A second pain is along my right side ribs for several months. I've been getting this one treated by my physio (more below). The third pain I've only had for 2 weeks and is centered in the middle over my pubic area.
I see my amazing longtime physiotherapist/osteopath once a month. I saw her on Monday. I asked her for help on deciding if I needed to go to my GP to get further investigations or if she thinks they might be cancer related. She had already been helping me with the middle one which she said was caused by my muscles deteriorating so much after a year of severe anemia from ongoing chemotherapy for 2 cancers. The muscles weren't holding things in place and things were moving out of alignment. After describing the other 2 pains, she said they were both things she could treat with osteopathy. Again because of muscle deterioration and the void left by the hysterectomy things were moving and were putting pressure on nerves and other organs. She can move them back into a better position. Huge relief to me that it's likely not the cancer returning earlier than predicted. I don't know what I'd do without her expertise and whole body perspective. Why doesn't oncology know about this. It can't be unusual. They should be actively directing patients to physios and osteopathy. Just thought others might benefit from this info.
If you are still concerned about these pains you are experiencing, ask if there is any other definitive testing that can be done to look at it. Is there any specialize CT scans that can be done, ultrasounds, colonoscopy? It doesn't hurt to have it investigated and treated at the same time. For one, it will give you tremendous piece of mind once you have done so. It is frustrating and we as patients shouldn't have to do all this work ourselves. If you aren't up to it, see if someone close will come with you to your appt and do the talking for you. I would in the meantime, record when these pains are occurring. For example, is it after eating something? is it before a bowel movement? is it what you are eating? after exercise or exertion? All of those things will help to narrow it down for the health professionals. I hope this helps and I sincerely hope you get some answers soon. Glad to hear your osteopath is helping. Our bodies certainly go through a lot after the surgery. Hang in there.
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@Strongwoman
No question really. Was just going to ask if you were going to check it pre-appt. 😁0 -
@jmbarrhaven
How nice to be on your second remission!!Thanks for describing your symptoms and the potential fixes. That is great info!0 -
I will if it is up. If not, if she has them today, I will ask for copies of each of them,GloHo said:@Strongwoman
No question really. Was just going to ask if you were going to check it pre-appt. 😁0 -
Good Morning Ladies. I have an update for you. Yesterday afternoon, I went to see my Oncologist. I asked her if the results were in for both CT scans. She could say for sure the one was but looked for the other I had done on Monday this week. She found them both and we went over them together. Both are confirming that I not only have growth/progression but that it is widespread in my peritoneal cavity. So I have multiple sites. This confirms that the surgeon will NOT be going in to do anything. We discussed the upcoming colonoscopy and I stated that there is no point in me doing it. First, because it is a process and why do that to my body when we already know what the outcome is...meaning no surgery. We then discussed what my CA 125 level is doing. It has gone from 312 to 627 in one month. So not good at all. We then discussed what may potentially happen to my body. The consensus is that I will have an irreversible bowel obstruction and die. So, we discussed what the plans are for that. I will either be good health wise and have a sudden bowel obstruction that I can't come out of OR will fail over time. Either situation I have asked to go to Hospice. We have discussed at length Palliative Sedation and keeping me comfortable until I can get to Hospice. It will be easier on my family if we do this. The hard part yesterday was telling them all. It was like telling them all I had cancer for the first time. That is what if felt like. I have been so good for so long it is almost unbelievable. Most of this explains how I have been feeling inside and in general. I am putting more plans in place today with my care coordinator and getting some things signed like DNR and that ambulance will take me directly to Hospice should anything happen. This also pretty much assures that despite what the landlords are going to do, we aren't going anywhere anytime soon. Can't see a judge in any capacity telling us we have to go given this information. My hubby and sons are reeling as are my parents and my elderly Aunt. That is as far as I got with telling people yesterday. I plan on going to see my sister and my younger Aunt in person today. I also will tell my girlfriend in person as well. It's all tough and surreal in some ways. I will finish off my box of Letrozole and keep taking my turkey tail tea. I am not going to do chemo as there are no guarantees, it messes with the immune system, feel unwell and lose hair. Not something I want to go through with no perceived outcome and also don't want my family to see my end days like that. I am going to make sure I follow through and get my projects done sooner rather than later because it will weigh on me if I don't. Most importantly, my projects for my boys. My hubby was saying last night well I will need to know this and that, and I looked at him and told him there is nothing to worry about and that mostly my gf will take care of some of the minor stuff. Letting him and my Mom know what I want to happen health wise is all they need to focus on. There is going to be some tough days ahead but I will get through them.
I plan on going to Costco with my elderly Aunt this morning as planned. She is so good but worried and scared about her upcoming procedure next week. She has been great and we do have a special kind of relationship for sure. So, my fellow Teal Sisters. That is all I know and have for you this morning. I wanted to let you all know before the Teal Thursday chat. Hope to see some of you online this afternoon.
Take care all. 4 -
@Strongwoman you absolutely amaze me! To write so calmly and articulately about such a devastating final prognosis shows beyond doubt how appropriately you chose your Teal Sister name. By being so forthright you constantly generously share critical information that helps guide the rest of us on the possible arch of this terrible disease. I thank you for your grace, guidance and leadership.2
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Thank you @jmbarrhaven for those kind words. I will do this until I can't and I will know when it is time. It will help me get through this. 1
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@Strongwoman I have no words to express how I feel. Please know that in the short time I have been here I have grown to love and admire you. Your kindness and knowledge have brought strength and hope not only to me but to all Teal sisters. Today I send you strength, love and courage as you face the day.2
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@StrongwomanSending big hugs 🤗.You are truly an amazing person!
You have been our go-to, our leader, and a shoulder for us to cry on. Your support and guidance have given us the strength to carry on. For that, I am personally truly thankful.Sending strength and love your way 🩵.3 -
@Strongwoman, you are absolutely an amazing person to share so much despite what you are going through. My prayers and love to you 🙏❤2
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@Strongwoman, I am in bits.2
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Well Ladies.....thank you all for your kind words. I plan on being here until I can't. So, with that being said, how is everyone today? Where are you at with things?
@GloHo How goes the trial or where are things at?
@melissa How was the vacay?
@JoanEG How is your healing going?
@Hooodith How are you doing with your traumatic experience?
It is a rainy day here. I have been and taken my elderly Aunt to Costco and am now home in my chair, eating a rice pudding and watching The Rookie.
What is going on ladies and what do you want to chat about today?1 -
Some words for today.1 -
@ Strongwoman - I have lived with extensive spread in the cavity since day 1 and I'm still here so I hope the 'eventually' is far off for you. I don't have the bowel issues though. I am a bit puzzled that they aren't suggesting a bag to bypass the bowel altogether for as long as it takes. I'm greatly saddened by the news you got and I hope they are wrong with how definite this prognosis is. Don't give up is my advice - keep fighting for new treatments. Of course it is up to you. I understand people reach that point of 'enough!' I respect that more deeply now as I've had glimpses of those feelings myself and know that it is different for everyone. Thanks for reaching out to all of us here and I hope you can find comfort here in the love you find. Sending many many hugs.2
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@Strongwoman
Hi! Trial is going well. I discovered that I am in a cohort of ovarian patients added to the original trial that is not receiving the max dose of the drug. How do I feel about that? There were only two additional cohorts added…with a total of 30 in all. and that one is ovarian is perhaps a sign that more focus is being given to our disease. If not for this addition, I would not be in the trial at all. As for the lower dose, if my past history is any indication, I probably would have ended up at this dose fairly early in the trial anyway. In the news report “…is utilizing this clinical study to further characterize safety and efficacy of a second potentially effacious dose.” My liver enzymes are in the normal range…first time since I started the previous immunotherapy trial which made the counts skyrocket. They have remained elevated since I stopped the trial in Nov ‘23. That they are now in the norm range is a definite positive for me because I was convinced that there had been some damage to my liver!! One less thing to worry about for now.0 -
Thank you @BellaDonna1959 The risks outweigh the benefits of undergoing a surgery. I know that from the CT scan and where everything is located. There is no point to do or undergo a colonoscopy for the same results. The risks going in would be perforation and infection. Perhaps they could do a bag or ostomy but it would only be for a certain area and they wouldn't address the rest. I am at peace with what is. I will continue to take my turkey tail tea, live my life with the quality I currently have then hope for the best and plan for the rest. I have chosen not to do chemo due to what I feel I would undergo and the results or side effects would be. And no, we don't know until we are "in it" to make the decisions we do. I have based many of my decisions on my quality of life and what I chose to do. I chose not to have a bilateral nephrostomy over a year ago and don't regret my decision. I also know in my mind what I want and don't want my family to watch and witness. I am at peace with it all. The emotions do flood in but I know I have had some very memorable moments and lasting ones. I am going nowhere yet and that is what I remind myself of daily now. Thank you for your kind words. 4
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@GloHo That sounds like some good feedback so far. The liver enzymes returning to the normal level is wonderful news. Definitely one less thing to worry about. Good to hear/see that more focus is being made with Ovarian patients/cases. One can only hope that it continues and they make some breakthroughs with it in the near future.
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@Strongwoman
Yes. That it is one of two additional cohorts is interesting and makes me wonder if they saw some positive results from phase 1 for these two groups. I will get a CT scan plus my CA125 blood work at the end of May. So, wait and see.1 -
Hi everyone.I haven't been to this chat for 2-3 years.Am grateful it's still running.I also found monthly online meetups posted,next one is on Apr.16.Has any of you attended0
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@Strongwoman my healing is going well. I am feeling stronger all the time. Today I was able to clean my bathroom, change the sheets on my bed and do some laundry. I will leave the vacuuming for my sister who will come on Saturday. I had an appointment with my medical oncologist, in Victoria yesterday but when I got there I was informed that I was supposed to see a different doctor on Friday. Obviously no one contacted me about the change! I was extremely upset since my son had taken time off work to take me to the appointment. My best friend will take me to my appointment tomorrow so he doesn’t have to take another day off work. Oh well it was a beautiful day for a drive.0
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@albertan Thank you for deciding to join our group today and welcome back! Where are you at in your journey? Is there anything you want to discuss in particular or looking to join in whenever?
Yes there are monthly meetings and no I have not attended one but was planning on doing so this month. Maybe I will see or chat with you there too?0 -
@JoanEG Well that does sound like you are healing and progressing well. Don't forget to rest and then see what your body tells you tomorrow. Sometimes the effects are delayed from the activities we do.
How frustrating about your medical appt. Upsetting as well. So, you are seeing a doctor you don't know or have had before but don't see regularly on Friday? I am thankful your bf can take you to the appt. They sound very supportive and what you need right now. Will you allow them to be with you in the actual appt time as well for support? How are you feeling about the upcoming appt?
How is the weather out in BC?0 -
Thank you @strongwoman.I Forgot how to do this chatting thing. I am doing well, thank you so much.I was on lynparza 2 years and just finished those in january. I know everybody's.Diagnosis was a little bit different here. But the reason why I decided to come back is to get a little bit more knowledge about the hormones. And how they affect ovarian cancer It's quite confusing because it seems some people use estrogen blockers, and some people are prescribed as h.R.T0
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@Strongwoman After three years of asking for it and getting referral finally to a menopause specialist I have been prescribed estrogen but I am still conflicted about it and it is causing some anxiety0
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albertan said:Thank you @strongwoman.I Forgot how to do this chatting thing. I am doing well, thank you so much.I was on lynparza 2 years and just finished those in january. I know everybody's.Diagnosis was a little bit different here. But the reason why I decided to come back is to get a little bit more knowledge about the hormones. And how they affect ovarian cancer It's quite confusing because it seems some people use estrogen blockers, and some people are prescribed as h.R.T
Thank you for sharing part of your story with us @albertan Yes, everyone's story can be similar but that much different as well. I am curious, why a menopause specialist to weigh in your journey? Have you been declared NED or are on a break for now? If there is anything in particular you are looking for info on, like a specific med, type the name or subject into the search bar and all those conversations will come up. I am positive the HGSC gals will weigh in when they can on any info they have on either of those, HRT or estrogen blockers.albertan said:@Strongwoman After three years of asking for it and getting referral finally to a menopause specialist I have been prescribed estrogen but I am still conflicted about it and it is causing some anxiety
I have LGSC and am on an aromatase inhibitor, Letrozole.0
