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Comments
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@melissa no, I am negative for these. I am tp53 positive like the serous cell kind. Are you on targeted treatment,
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@itzwhatever i am sorry you are feeling so anxious. I totally understand. I battle my anxiety every day. The cancerous lymph nodes may shrink with chemo or sometimes they can be surgically removed. I know of some women who received radiation to treat them. Your Onc will share a treatment plan to address the lymph nodes. Have you had debulking surgery yet?
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@Tanja no. I am not on targeted treatments yet, and hopefully I never need to be, or at least not for a long time. I did my traditional 6 treatments of carbo/ taxol which finished November 2023. No maintenance treatment or anything. At first I was very scared to be without my security blanket of some form of treatment but I am learning to live without it. It is just about 1.5 yrs since I had my surgery. My how time moves on.
I feel good, I'm going to the gym 5 days a week, working 3. I saw my oncologist yesterday for blood work and check up, all my labs are normal/good. My ca125 has stayed at 6 for over a year. Last scan in October didn't show anything, so I keep doing scans every 4 months but I might adjust the frequency to every 6 months in the spring.
My dr was teaching a medical student yesterday so she spent extra time with me. And explained the PIK3CA mutation to him, and that IF I need it we will start it
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hi ladies!
I have more updates! Thank you for the advice I will definitely be reaching out to PMH team for more support. I was actually feeling quite ill as my period is heavily bleeding and lasting more than 7 days. I got a blood transfusion and I’m feeling much better. I also got a ct scan. Unfortunately it seems like the disease is progressing in my lymph nodes as well i got a lytic lesson near my pelvis. Talking it out has def help my anxiety once again thank you ladies for the support.
Also I got a genetic testing! So I’m all clear genetically seems like I was a de novo case. My MOC did test positive for tp53 and kras mutation. With the updated ct it seems like we might switch treatment plan in tackling this. 💪
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@itzwhatever I am sure that I speak for all of us when I say that you can always talk it out here. I agree, this is a nice blog where teal sisters actually listen and respond. I wish for you from the bottom of my heart that you get a good effective new treatment plan without too many side effects.
@melissa Apparently, there are 2 kinds of clear cell ovarian carcinomas - those who express PIk3CA and ARID1A and they aere called "classic CCOC" and then those who express pT53 and they are called "HGSC-lice CCOC".
But next to these expression profiles, all tumors (not only ovarian) can be tested for HER2, TER, MMR, HDR, CPS and newly FRalpha as this may provide more treatment option.
In my own journey, I learned that at PMH this is not necessarily done and Health Canada approved algorithm dictated which test is covered for waht tunor, E.g. I payed my own HDR testing.
So, I just want to put it out there for everybody to know and to look into if they need new treatment options.I learned another thing today. And I should disclose that I am a scientist as well, so I can get easy access to newest publications and presentations. Today, I heard Prof Rob Knight from the University of Diego talk
He is involved in the earth microbiome project which is tasked with unraveling the human microbiome (gut, skin, oral, etc), its interaction with environment and its effect on disease. This was a high level talk and for 10 minutes he talked about association between cancer and the microbiome, mainly gut,
He mentioned a couple of very interesting things.
- There are studies using probiotics in cancer patients to see whether they improve the microbiome and outcome of patients. These studies have so far shown, in contrast to what was anticipated, that patients on probiotics have a worse outcome than those who are not on probiotics.
2. He showed that the most impactful factor to influence the gut microbiome to make it more divers (and thus healthier) is dietary intake of plants/fiber (this is considered prebiotic, meaning it helps good bacteria to grow). He showed that not the quantity of plants but the variety of plants one consumes has a more beneficial effect.
So, there is more to following a healthy, plant enriched diet for cancer patients than just staying healthy. It might directly affect cancer cell growth or cancer cell death (if you like). And new also for me, probiotics may not have a positive effect but may actually be harming.
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Thanks for sharing your recent info @Tanja It will prove to be helpful to many I am sure.
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@Tanja wow that’s a lot of info. Thanks for sharing!!
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@itzwhatever I’m glad you are feeling better and hope that a new treatment plan is forthcoming!
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@melissa thank you for your post. It’s nice to see there is hope out there. I wish you nothing but continued good health!!
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@alwayslearning and rest of teal sisters
I realized, I made a mistake. The high various plant eating diet works for cancer patients with no gut problems. For all on low residual diet, I have been on that for 6 months after bowel obstruction, they can not follow such a diet. In this case avoiding bowel obstruction is the most important aim. I guess, I just wanted to alert you to the issue of probiotics as this was new to me too.
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@Tanja thanks so much for this latest science update. I think I'll be adjusting my diet with regards to probiotic foods as the general push is 3 servings a day for good gut health so yikes. If you do become aware of anything else regarding gut health and ovarian cancer please give updates.
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Hello everybody, just came across an interesting study for all those, like me, with clear cell ovarian or endometrial or cervical cancer. PMH in Toronto is part of this. Check it out if you like.
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Hi all,
My name is Sue. Diagnosed in 2023 stage 3 HGS. Was misdiagnosed for years before that. I had 3 Frontline, debulking surgery, and 3 more Frontline. I was put on Zejula afterwards which didn't seem to work since I am now having my first reoccurance. I am in Nova Scotia.
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hi @SueB I was also diagnosed in 2023. 3C High grade serous. I’m sorry to hear of your reoccurrence Has your oncologist discussed your treatment plan? Is surgery an option? I’ve heard of many women who have a longer remission after their first reoccurrence. I pray that will be the case with you!
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Hi @SueB and welcome to the group. I'm so sorry to hear that you had to go through a misdiagnosis for years. It sounds like you've had your share of challenges. I hope you will find this forum a place where you find those who 'get it'. The Teal Sisters in this group have such varying stories, however what we all share is a desire to support each other whenever we can.
Since joining this forum I have been supported and learned so much from this group, a group that completely gets it!!! I have high grade serous, stage 3C. I had 13 tumours in my abdomen. I had major debulking surgery in February ('24) and completed my six rounds of chemo (pac/carbo like you) in July. I'm treated at PMH in Toronto. I'm BRCA2 positive so am now on Lynparza maintenance drug (4 months in).
Is there anything in particular you were looking for in terms of support? Feel free to search the site as there is a lot of information out there however, also post anything you specifically are seeking information about.
We look forward to getting to know you.
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welcome @SueB I was also diagnosed in 2023 3C HGS. I had 6 rounds of chemo (pax/carbo), major debulking surgery in March followed by 2 more rounds of chemo. I am BRCA2 positive and have been taking Lynparza since June. I’m just heading out the door for a CT scan so feeling some scanxiety. I’m sorry to hear you are having a recurrence and I hope your oncologist has a plan in place for treatment. You will find this group to be very supportive and always happy to answer questions or just “get it”.
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Hi @mazupardo I'm just checking in to see how you are doing? How are the wedding plans going? It's amazing how fast the date will creep up. Hoping you are feeling good.
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I am hanging in there. I had a rough go when I got back from Thailand..I spent most of december in the hospital because I was having a lot of fluid buildup in my lungs which caused me to go to the hospital, they had to put in a temp tube to drain me and they were unsure if the fluid build up was cancer related or infection related so I had to stay for about two weeks, I ended up getting discharged to be sent to this clinic to get a permanent drain to put in my lungs but unfortunately because they drained me too much, they couldn’t put in the permanent one so they took out the temporary one and sent me back home, this was not a good idea. I ended up staying home for about a day and a half and had to go back to the ER for pain!! The pain was cancer related because everything has been progressing since October, and being hospitalized was delaying my chemo. I got pain meds and was sent home again about a week later….but that didn’t last long lol, I was home a day and then called 911 cause I couldn’t breathe - again the fluid build up and they had to take me to the ICU for about a week because they had this special machine to help with my breathing. I stayed at the hospital for the holidays! I’ve been home for about a week and a bit now, they’ve attached me to this pain pump that gives me constant hydromorphone via sub q in my belly to manage my pain, it has been so helpful and they finally were able to get a permanent catheter in my lung to have my home nurse drain my fluids every few days and I was able to finally start on chemo last Tuesday 7th! Finally after 3 months of no treatment and just disease progression. Luckily my CT didn’t show any drastic changes except for those few new nodules that have grown in my lungs.
wedding planning has been put on hold because of all of this lol BUT I’m finally more stable enough to actually start it back again!it has just been hard because my energy levels are so low from being at the hospital for so long and they sent me home with home oxygen as needed, so I do unfortunately have to use it if I’m out and about and I’m like walking and doing like any kind of Physical exertion just because my body for the last month hasn’t been used to it at all but I’m becoming a bit more stable. I haven’t had to use the oxygen in about two days now which has been good so in terms of wedding planning booked our menu tasting next week so hopefully by next week I’ll be good to go to try some really good food!!
My palliative care team today discussed the slow removal of the pain pump in about two weeks time and see if my body will react with the pills because at hospital they didn’t work at all which is why the pump was brought in!
i hope everyone else is doing well and had a good holiday!Sorry to dump all this info haha so much has happened the last few months but I am glad gonna somewhat back on track!
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@mazupardo you have been through so much in such a short time! It’s wonderful that you were able to travel to Thailand when you able. The fatigue is really hard to navigate some days, isn’t it? I’m glad that you have a lung catheter now and that it’s helping with your breathing. Hopeful that your pain stays at bay and that you can keep on planning your wedding. 💒
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@mazupardo I agree with @horseGirl you got the timing right, did you ever, to go to Thailand. But, I was so sorry to hear what you have gone through. And despite of this, you don't complain or feel sorry for yourself. You continue to work on your aim- the wedding. This is of great inspiration for me. So, thank you for telling your story. I am glad that you are feeling better, can breathe, get chemo and do your wedding planning. Maybe you can walk a bit every day to get some strength back. Thinking of you.
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@mazupardo please don't apologize for sharing. You are never dumping on this group. We all have challenges. We all have stories. They deserve to be told.!!!! You have been through a lot in such a short period of time. I'm so glad you seem to be progressing forward especially with the chemo back on track and that the CT didn't reveal drastic changes. I can only imagine how upsetting/frustrating (insert your emotion) this has been for you. You are clearly an exceptionally strong individual especially when you consider all the hurdles you've overcome this past month.
I'm sure you are very glad to be able to focus back on your wedding planning. How exciting to be into menu planning. Yum. I hope your stamina increases each day and that your chemo doesn't take too much of a toll on you. Please keep us informed. Sending you virtual hugs and positive thoughts.
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Hi @BennieTBear. I wanted to check in to see how you are doing. I've been checking in with some of our Teal Sisters and you were on my mind. If you are up to it, please drop us a note and let us know how you are doing. As always, the Teal Sisters are here and listening!
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Hi @Alwayslearning I appreciate the check-in ❤️. I am actually feeling really good this week. I had three rounds of chemo that started 5 weeks after my surgery. I ended up having a reaction to the Carboplatin on the 2nd round (which was my 5th round overall). So they switched me to Cisplatin for my last round (on Boxing Day) and it kind of kicked my butt a bit. It was VERY hard on my stomach - the nausea was really bad and I had way more fatigue than on the Carbo. It also caused tinnitus and very dry mouth. They were a bit concerned about my hearing so I ended up at the audiologist. I apparently do have some hearing loss but they aren't able to tell if it's from the chemo or if it's just age-related. I suspect it's age and all of the loud concerts I went to … lol. I'm just about 3 weeks out from the last round and the tinnitus is less frequent now, so I think it will resolve itself. It is a bit concerning as I'm wondering what drug they will use if I need more chemo down the line and if I am possibly platinum-resistant.
I also had my follow up CT scan last week and I meet with my oncologist next Monday, the 20th. I have every reason to feel positive about it, but there's always the doubt in the back of your mind that goes "what if". I actually got a notification this morning that the results are available on-line. I was going to look, but I've since decided I'm not going to and I'll let the doctor give me the results on Monday. Looking will not change the results and I'm feeling really good this week so just want to live this week feeling as "normal" as possible. I started a cancer exercise program that's run through the University of Calgary and I've got lunches and coffee dates with friends I haven't seen for a few months as I was staying far away from most people for my last rounds of chemo. So living life this week and Monday will be what it will be.
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@BennieTBear I have completed 3 rounds of carbo / taxol. 4th is on the 20th. I meet with oncology on the 27th to discuss and get CT results to see if I will require surgery. The recurrence treatment is definitely harder on me than the first time around. After the 1st treatment I was really not well. The breakthrough drugs were not working and the stomach pain was so intense. My team changed my meds and the difference was incredible the 2nd and 3rd round. So grateful for my team. My ca125 was trending down after the 2nd treatment I am anxiously awaiting results on Friday. I'm halfway through just have to keep pushing through. I did see my GP to talk about something for anxiety and he prescribed Wellbutrin. I started it this week. Hope it help
Stay well
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Hi @BennieTBear I'm glad you are feeling well considering your chemo challenges. You are the first person I've seen posting about Cisplatin. I was supposed to have that as my chemo last March but the IP ports failed (twice) for me for it's delivery so they switched me to Carbo. I recall reading about tinnitus as a side effect and I'm so sorry it impacted you. I am however glad it's starting to resolve itself. Try not to be concerned about the 'what if' for the future. It's hard I know but focus on healing now.
As for the CT results I TOTALLY understand the 'waiting' method. My hubby and I do that too. I know others like to look so they are prepared with any questions for the appointment however I, like you, know that looking ahead won't change the results. I respect personal choices.
Glad to hear you've started an exercise program. My son's fiancée is a PhD candidate whose focus is ovarian cancer (what are the chances of that right?!). She was at the OCC annual conference and one survivor said that the best thing you can do is exercise every day. Walking and weights. I've started swimming lengths. I'm up to 24 lengths 3x a week which is a huge accomplishment for me since I am not a swimmer at all. Plus I'm doing some boxing (I have a virtual reality headset). My muscles/toning went to shit over the past year of surgery/treatment and I'm turning 60 this year so it's an uphill battle. But I'll take it on!
It's also nice to hear you are reconnecting with friends. That can be amazing for the mind, body and soul.
I'm sending nothing but positive thoughts your way for your CT scan results.
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@NovaScotiagirl so glad to hear that your medical team were able to change your meds to make the infusions better. They tend to have so many tricks up their sleeves. Also good to hear that your ca125 is in the downward trend. That's always positive news. Glad as well that you were able to get something for anxiety. I hope that is helping.
You are strong and you've got this! If you are up to it, let us know the outcome following your meeting on the 27th. Sending you hugs and positivity.
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Hi @Bonzi I'm just checking in to see how you are doing. I hope you have been feeling well. If you are up for it, please drop us a note and update us on your journey. The Teal Sisters in this forum are here to support you as best we can.
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@Alwayslearning I hear you on the muscle tone going to shit! Lol. I used to be able to do pushups from the floor, but now I can barely manage 3 against the wall. In hindsight I wish I had continued with some sort of strength training during treatment. I did walk every day, even if I could only manage 5 minutes at a time. It really helped with the leg pain that I experienced. I'm happy to hear that you've picked up swimming! I find it so relaxing and it's great for cardio. I would LOVE to be able to swim as well, but this whole show has caused a lot of unpredictable incontinence so I am scared to go anywhere near a pool. Hoping that pelvic floor training will help with that as well. As for the Cisplatin, my understanding is it is given if someone develops a sensitivity reaction to Carboplatin, which is not uncommon. It is more toxic than Carboplatin, which I can attest to.
@NovaScotiagirl I'm so happy your team was able change things up so your subsequent treatments weren't as bad. The first one sounded awful and getting to the halfway point is huge. Are you comfortable sharing what meds were changed? I'm curious considering the more intense side effects I experienced this last round. Wondering if I should talk to my team about changes if I need to go through more treatments. Wishing you all the best for your scan results at the end of month!
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@BennieTBear sure can. They changed my aprepitant to Akynzeo and the breakthrough ondansetron HCL to Olanzapine
huge improvement
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