Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. 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 Peer Support Volunteer. 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).
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Very interesting read @Annie1950
To think that early on and possibly when a Pap is being done that they may be able to identify these bacteria and possibly prevent OC progressing to an end stage upon diagnosis would be ground breaking. I hope the research continues and something soon occurs for women everywhere.
I know the microbiome of our guts have a significant role in our overall health in general and more is being talked about it not only at a naturopathic level but in medical communities.
Thank you for sharing the info and the link.
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Good Afternoon Ladies on this first Teal Thursday of April 2024.
Today it is a dreary looking day out there and much of Ontario has seen a system sweep in and drastically change temperatures and weather over most of the province. By Sunday though, it is to be 12 degrees and Sunny. I am all for that!
I wanted to touch briefly on last week's discussion and provide you all the link to the podcast that is associated with the book "Hope for the Best and Plan for the Rest". The podcast is entitled The Waiting Room Revolution and currently there are 6 seasons. Here is the link if you wanted to check any of them out: Podcast | Waiting Room Revolution
Now, back to all of you. There has been great discussions on the forum as of late. We have newcomers, what I call our 'regulars' and some of our 'seasoned' members all on and interacting. It has been great. A reminder that we don't know where our information will come from or in what form, what person will give you that 'glimmer of hope' and that this forum is for all of you to meet you where you are at in your own personal journey. It is a safe space and we respect everyone's individual beliefs and choices for their own path or journey. I hope you all continue to feel that as time goes on.
A little update on myself, I had a call from the surgeon's office yesterday and I will have the CT Enterography this Monday, April 8th and uggh...have to be there for 6:30am. The earliest they could schedule in the colonoscopy was May 6th and again.....I have to be there for 6:30am. Oh well, it will done and over with and I can always nap.
I am thankful that I will have the CT scans done before the colonoscopy. Today I have my normal routine CT scan that includes the chest, abdomen and pelvis. We will see what that shows. I am curious to see how the 2 scans will differ in regards to the depth of information. I will keep you posted for sure.
Sincere condolences go out to @paulaholmesrodman and the family. For those that may not know her sister and our fellow Teal Sister, left our world this week, peacefully and surrounded by her family. I would like to acknowledge this and all the work that Paula has done with advocating for those with Autism as they battle Ovarian Cancer as well.
Thoughts go out to @Eileen and @HoldingOn wherever they are at with their End of Life journey. Please pause for a moment for all of these ladies.
@JoanEG You are well into your healing, how is that going for you?
@babs272 You were on earlier and facing some issues. How is that going and more importantly, how are you doing with it all? How can we help you?
@HorseGirl You haven't been on in a bit, how are things going?
@Camper62 Hope is what I think you received a little this week and I truly wish it stays with you as you ask those difficult questions so that you can move forward with your own journey.
@Sandi6 You shared with us info regarding some Spiritual worksheets and were hopeful at the time. How are you doing and is it helping you through the fog that was in front of you before?
@Hooodith Our friend. How are you doing these days? Some of that pain easing?
@GloHo So, the lights did come back on at PMH, I read. Did you end up receiving treatment that day? I guess you are "no longer in the dark". LOL
How are things going with you?
@Sylviequebecbc Where are things at with you? Any progression with answers or still in a holding pattern waiting for an appt?
To all the rest of you out there, come on, let us know how you are doing and give us an update. I am here. Are you?
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I can't stay long - getting ready for guests. Last week it was hemorrhoids, this week it is bloating - feeling like I'm always battling another source of pain or discomfort. I did get my toenails cut by a very nice podiatrist. That made me feel better. I will ask about my next scan on Wednesday next week. This week it doesn't feel much like a week off chemo due to the other issues. I am trying to go through my closet, downsize it and make sure everything actually fits me - I've gained 25 pounds from the steroids. Does anyone know a way to beat the weight-gain from them? It's a battle I want to win - I don't want to carry this extra weight - it is exhausting on top of everything else. Did anyone not gain weight on steroids? How did you do that? I have to take them for allergies to Taxol but I keep trying to reduce the dose. Glad to hear all the news.
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@Strongwoman thank you for getting us rolling today. I’m sending heartfelt condolences to @paulaholmesrodman and her family as well as strength and peaceful energy to @Eileen and @HoldingOn.
My healing is going well. I have gained about 4 pounds since I have been home. My magnesium level is still very low so they have doubled the daily dose of supplements. I am waiting to hear when my next round of chemo will be. In the meantime I am enjoying the company of my daughter who is here from Saskatchewan until the 9th.
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Hello! It’s been a long time since I’ve been on the Chat live, although I do try to check the messages later on.
Thinking of @Eileen and hope she is in a good place - wherever that is for her.
For those who don’t know me, I was diagnosed with 2 primary cancers in Jan 2020: Clear Cell Ovarian Cancer and ER, PR+ HER2- Breast Cancer. Both were early stage cancers. The Ovarian Cancer was more of a concern, and after my mastectomy, I had a total hysterectomy followed by chemo. I was on regular surveillance with the ovarian cancer team. Not so much for the breast cancer, however. I was put on Letrozole and only scheduled for annual bone density scans. Through my ovarian cancer 6-monthly CT scans, in 2022, several lesions were identified on my liver and many lesions all over my back, spine and legs. After several tests and a biopsy, it was determined that the ovarian cancer was still stable, but it was the breast cancer that had spread all over. I was in so much disbelief, all I could grasp was that I was suddenly dealing with metastatic breast cancer - and my daughter was getting married in 2 months.
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@BellaDonna1959 That is nice...getting ready for guests. Something to look forward to.
Hemorrhoids is a battle many of us face. One can use vasoline with a gloved finger to help. Also watching our diets to head off any constipation is another way. Sometimes though, food just taste so darn good it is hard to say "no". Now I don't have a choice or risk an obstruction but I do remember when I enjoyed food.
Bloating could be caused from food one is eating as well. To clarify, you go for a scan next week or obtaining results next week? Either way, results will be in soon.
As far as weight gain and steroids, I don't have an answer for that and that will be magic. I took steroids prior to my chemo and for a couple of days afterward to head off my symptoms and it helped. At the time, I gained weight and resigned myself to the fact that it was going to happen. I did my best to walk when I could and at the time I was fairly good with my diet as well. Having weight on is better than battling being underweight and blood tests etc. Knowing that, I went with it and didn't fight it too much. I can understand that cycle after cycle how that would become tougher to accept. Other than keeping up with exercise or watching your diet, I am not sure what to say about it. Does your team have any suggestions? You mentioned 'reducing the dose'. Is that the steroid? Is this something you have discussed before or something yet to be discussed with your team? Perhaps some of the other ladies may have some helpful hints or tricks for the weight gain issue.0 -
Thanks @strongwoman for giving us the news on Paula. Sending condolences to her family and loved ones.I am glad to find you, still strong (as per your name!), and getting ready for the next scans and procedures. I wish you all the best with those - and your upcoming procedures later on. It’s not easy, I know, but sometimes it feels like we really don’t have many choices. Some of my friends and family members tell me how strong I am, going through so much - so many meds (I am on oral chemo at the moment - 2 weeks on, 1 week off), but, I don’t know if I really am “strong”. I’m doing the only thing I feel I can do - and that is to push the disease back a little at a time; and hope for the best.0
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@JoanEG So glad to hear you are on the mend and that you are enjoying the company of your daughter. Special moments indeed. As for the weight gain, I don't know what to say. As women, we can focus on that and for some it is larger issue as a whole for them. I see it as, the body doing what it needs to do as it adjusts to all the insult we have given it. I tried my best to acknowledge the weight gain but also recognize there would be a time and a place to address it later down the road. If bloodwork etc were within the ranges they wanted to see monthly, the weight gain was minimal in my thoughts. I know it is real and concerning at the time for all that go through it. When we look at what we have put our body's through it is pretty amazing they didn't react in a more negative way. Our body's are pretty amazing and what they are capable of doing. It sounds like they are watching your bloodwork and recommending things accordingly. Bet it is nice to have a break from chemo. What are you doing to fill your days these days?0
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@Strongwoman sorry I wasn’t clear on the weight gain issue. In my case it is great news! I had lost close to 30 pounds since I started chemo in October so I am very happy to be gaining some back! Right now I’m filling my days with mostly sedentary things. Lots of time spent on my iPad, reading and binging TV shows. I try to go for short walks 3 times a day and I’m doing more light housework but my energy level is still not great thanks to low iron and magnesium.0
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@Tinazzie Thank you for deciding to join us 'live' today. It is nice to hear from you. You have been through a lot and sounds like you are still processing a lot of it. You are right that at times we can feel like there aren't "many choices". I feel we make the decisions we do because at the time, it is what is 'right' for us as individuals. I can understand the feelings of not feeling strong at times but how those around you want to help us by saying the words they feel will help. It can leave us with many feelings ourselves. Some may be that we aren't living up to what they want us to be. This couldn't be further from the truth. We do whatever we can to be 'present' and at times not show them how we truly feel. One thing I do know, you are here, with us on this forum, expressing what is inside of you and that my friend, is a step. We are here for you and with you. Lean us when you need to and when those time come up with family. I, too, have those times that I don't feel we can truly express our inner feelings with them because we haven't totally figured them out ourselves. That is okay. It is a process that is ever changing, ebbing and flowing reminding us daily that we are here, today and to appreciate what is around us and in our lives. No matter what your decisions are, @Tinazzie it takes strength of body and mind to make them. So you do have that strength even when you feel you may not have it. We will be here as well to be as much or as little part of your journey as you would like. Thank you for being brave and honest with us today. 0
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Well then....congrats on the weight gain!!!
Yes, it does take a bit for that energy level to come back. You are doing great and those walks are good for healing and your mind. What are you reading these days? Binging? I am reading "The Lost Girls of Paris" and am enjoying that. Binging....with my youngest son, "The Rookie", my oldest son, "Blue Bloods", with hubby "Pennyworth" and by myself "Transplant". What a broad range eh? Throw in a movie or two in there and voila. My sleeping is off. If I go to bed too early, I am up too much in the night. I go to bed late then wake up by 6-7am or sometime earlier. Fading off with energy in the afternoon. Ya, I know, nap but I don't like to. I have a feeling I won't be able to fight it soon but will cross that bridge when I get there.1 -
@Strongwoman I am currently reading “The Empty Chair” and binging Chicago Med, Fire and PD. I also go to bed early by about 9:30 pm and get up at 6 or earlier. I try not to nap in the afternoon or I can’t sleep at night but sometimes find myself dozing off. I think sometimes we have to let our body decide. Those early morning appointments you have coming up are not going to be very nice!0
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Hmm I am going to look up that book title and see what it is all about. I have heard that those series are good.
Yes, listen to our bodies is what we should do for sure. Why we don't at times, I have no idea.
No, those early morning appts will not be nice. Good thing though, the one this Monday should be quick and not long. It may require an afternoon nap that day. The one in May, well they are going to sedate me so I will have a nice little nap.
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@Annie1950
Thank you for sharing your journey. Definitely inspiring. And the information provided re bacteria…very interesting.0 -
@BellaDonna1959
At times it does feel like it is one thing after another!! I hope your bloating subsides soon.
Steroids = weight gain. I understand the “feeling” of weight gain and there is a point where it can interfere with how you feel overall. I just took it as a fact of life and just tried to focus on maintaining an exercise schedule and to eating as healthy as possible so I knew my body was getting the healing effects of the exercise and the nutrition it needed to do what it had to do. I did have a bout of sudden unexplained weight loss awhile back and it really scared me because that is not the norm for me. It made me realize that I would much rather deal with the ups and downs of weight gain. For me, dieting/losing weight is not a priority right now. With all the things the disease and drugs throw at my body, I just want to focus on maintaining the best QOL I can. Now…if you do find the magic elixir for losing steroid weight, please share. 😁0 -
@Strongwoman
Great to hear your appointments are scheduled and so soon too!! I would rather have an early appointment…less chance of delays/back ups that usually occur as the day goes on. 😁
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@Strongwoman
My update…
Yes, I did eventually get my infusion. I was scheduled for 9:45-ish but with all that happened that day (they had to do everything manually until the system came back up), I got the actual infusion at 3:30!! Was ok because I had to stay overnight anyway, but it did delay my discharge the next day!! No issues/side effects.0 -
@Strongwoman In Montreal there is a dr working on the DovEEgene project which is trying to perfect early detection which will be like a Pap smear. I hope it will help all women with ovarian cancer or at least catching it early.
i have a question if anyone can guide me. My clear cell OC reoccurred. I’ve battled it over a year now. I tried chemo carbo caelyx and 5 rounds of immunotherapy. The latter did absolutely nothing. My cancer progressed. I also developed ascites (blood colour) which I need to empty twice a week. In less than a month they removed 9 litres. I lost at least 8 kilos in two month.
i have fatigue weakness and itchiness dry mouth vomiting nausea etc. I got the side effects without the benefits 😥
next step is a clinical trial and no clue if I am even eligible for it. It’s from espera pharm a combination of Ly2880070 (it’s the clinical drug )plus gemcitabine. Did anyone every have this combination? Side effects?
2nd. I was thinking of looking to see if any other clinical trials exist that can help. Does anyone have a web site?
and it’s alot of medical info which I don’t necessarily understand. Is there a professional that can help thru that ?
Thanks ladies in advance1 -
@Lorraine5845
DovEEGene sounds promising. Thanks for sharing.Sorry to hear you’re having a tough go at it right now. I have done a lot of research for clinical trials and my go-to site is clinical trials.gov. However, I also check individual cancer sites, like OCC, Canadian Cancer, and even various cancer hospital sites to see if they have any additional trials listed. I could help you with an initial basic search…but it sounds like you also want assistance drilling down into the specific criteria to determine your eligibility. What I have done in the past is research, find a couple/few that I think I may be eligible for (I have high-grade serous) and ask my oncologist to review and/or follow up with the trial sponsor to determine my eligibility (I negotiate an approximate timeframe when I can expect to hear back from her about her inquiries on my behalf). My Oncologist is very much aware of my interest in clinical trials and she will often take the initiative to check things out before my appt with her! My centre also has a clinical research/trial dept that I am now familiar with and who have offered to help me if needed.I am actually in Toronto right now - just started a new clinical trial. I will be home tomorrow evening. If you’d like me to do an initial search, just send me a message on this site (from your profile page - click on the envelope) and I can help you over the weekend.Maybe other clear cell gals have done some current research for clinical trials? Let us know.0 -
HI @Lorraine5845 Thank you for that promising information regarding the DovEEgene project. That would excellent if something like that does come to fruition. Early detection would be welcomed by many.Lorraine5845 said:@Strongwoman In Montreal there is a dr working on the DovEEgene project which is trying to perfect early detection which will be like a Pap smear. I hope it will help all women with ovarian cancer or at least catching it early.
i have a question if anyone can guide me. My clear cell OC reoccurred. I’ve battled it over a year now. I tried chemo carbo caelyx and 5 rounds of immunotherapy. The latter did absolutely nothing. My cancer progressed. I also developed ascites (blood colour) which I need to empty twice a week. In less than a month they removed 9 litres. I lost at least 8 kilos in two month.
i have fatigue weakness and itchiness dry mouth vomiting nausea etc. I got the side effects without the benefits 😥
next step is a clinical trial and no clue if I am even eligible for it. It’s from espera pharm a combination of Ly2880070 (it’s the clinical drug )plus gemcitabine. Did anyone every have this combination? Side effects?
2nd. I was thinking of looking to see if any other clinical trials exist that can help. Does anyone have a web site?
and it’s alot of medical info which I don’t necessarily understand. Is there a professional that can help thru that ?
Thanks ladies in advance
As for you, and your clear cell recurrence, first, I am sorry to hear you are experiencing this. It is disheartening when we find that news out and try to process it. The side effects sound awful and would not make you feel well at all. What is your team saying about any of this?
As for research on clinical trials, I concur with @GloHo and her source she provided. I recall looking up my own by typing in what I had, recurrence and then clinical trials ontario to see what would come up. From there, I looked through to see what the eligibility was for any of them. Anything that I thought would pertain to me, I wrote down and then spoke to my Oncologist about at my next appt. I let them make the referral and went from there. If you don't want to look at the eligibility, ask your team to do it. Say, "I want to look at any clinical trials in any phase for the type of cancer I have, what is out there and who can you refer me too?". That is another option. The medical info can be difficult to wade through. If there is anything specific you want to go through and understand better, let me know and I will send you my info and we can go through it together. If you think that would help you, I would be glad to help if I can. The better you understand it, is better for you all around.
In the meantime, I hope you are finding some things to do for yourself and enjoy parts of the days.
Take care, rest and heal. 0 -
Manually? That would have been interesting to watch.GloHo said:@Strongwoman
My update…
Yes, I did eventually get my infusion. I was scheduled for 9:45-ish but with all that happened that day (they had to do everything manually until the system came back up), I got the actual infusion at 3:30!! Was ok because I had to stay overnight anyway, but it did delay my discharge the next day!! No issues/side effects.
Glad the power was restored and the infusion was able to be done even though it was getting later. Hope you continue to feel well with minimal side effects. 1 -
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Good Morning Ladies. I thought I would write and let you know what this CT Enterography is all about. Before the procedure, you drink 3 bottles of water each with 30 ml of lactulose in them. These are to be drunk every 20 mins so basically in 1 hour they are to be finished. I was unable to finish my last one completely and my insides felt like I was experiencing an obstruction again. Without the ultrasound to guide them, it took 3 tries to access a vein for the CT scan. The nurse asked me if I was ok and if I needed a cool cloth at all several times. The scan itself didn't last long and I was soon on my way home. I ended up very uncomfortable with pains in the abdomen the whole way home. At one point, I broke out into a sweat as well. When I got home, I immediately went to the bathroom. I ended up visiting it regularly after that. When I read that the stuff would leave your body in 2-3 hours, it wasn't specific as to what that meant. Lactulose is a laxative.....so....it was like I was clearing my body in prep for a colonoscopy. Ugghh! At one point, I stood up twice to try and leave the bathroom and was very soon sitting back down. So, to anyone out there that will be ever receiving this procedure, I recommend that home is not far away once you are done with your scan and be prepared for multiple bathroom trips after. I rested, drank Gatorade and ate some soda crackers. By dinner, I was hungry again and bowels had returned to normal. I am only hopeful that by the way my body responded that they captured what my body does when I have an obstruction which will lead them to discoveries as to what is occurring in my body so that I am more aware and to see if this is disease progression or scar tissue. I will keep you all posted as I find out more.
Hope those that watched the solar eclipse, did so safely and that you had a nice day.
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@Strongwoman
Well that sounds quite uncomfortable! Thanks for sharing the procedure details. Good to know! Now let’s hope they can determine the issue from this test! When are you going to hear from the Dr about the results?0 -
Thanks for letting us know and good luck with the results.0
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@GloHo Thank you. I have signed up for patient portals at both my local hospital (as they have changed) and the hospital that did the scan yesterday. I like being informed before heading into my appts if at all possible. I see my regular Oncologist on Wed afternoon this week. Headed off shortly to get bloodwork done and meet my gf for Crepes and Coffee. It is literally the name of the place we are going to. After yesterday, I can't wait to eat! LOL
Thank you @BellaDonna1959 I hope you are doing well with your journey as well. 1 -
@Strongwoman that procedure does not sound very nice! I hope it provides some answers and I’m glad you are feeling better today. Enjoy your crepes and coffee!0
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@Strongwoman. I am so glad thats over for you. Hope it reveals scar tissue and not progression. Sorry you missed the eclipse. If its any consolation, all of Bc did too.
Did any of you Easterners see it? What was it like?0
