I'm thinking of you and hoping each day will get better.
Original Message:
Sent: 04-23-2025 21:26
From: Meinvan
Subject: New here
Yes we have a nurses line to I called Monday after the bleeding started, another nurse called again today to check in I told her the bleeding was more, like a period bleeding she said to continue to hold my apixaban and if dr had anything else to add she would call me back. No word yet so for now I'll just keep watching it. Kind of feels like ascites discomfort again.
Original Message:
Sent: 04-23-2025 18:09
From: BennieTBear
Subject: New here
@Meinvan
I am so sorry you are having to deal with all of this on top of chemo. It must be so overwhelming. As far as "normal" goes? Everyone is different. For me, if you count chemo day as Day 1, my days 4 – 7 were the worst and then I started to feel better on day 8 and by the end of the 21 days I was feeling pretty good.
If you haven't already, I would encourage you to discuss your side effects with your care team. They can adjust medications and give you tips and tricks to help you through. Especially if you aren't able to eat. Here in Calgary they have a "triage" line that you call specifically for chemo side effects. I think I called them almost every day during the first 10 days of my first round. As far as I was concerned, they gave me the number so I was going to use it!
Round 2 will be less scary because you'll know what to expect. Sending my thoughts your way.
Original Message:
Sent: 04-23-2025 16:30
From: Meinvan
Subject: New here
Thanks for sharing your experiences with me. I'm currently on day 6 post chemo, having vag bleeding increased in the last couple of days, feeling bloated and increased discomfort. I'm hoping that will stop soon. So unsure what should be "normal" and not normal. Just scary when you have all these weird feelings going on. Still tired, didn't eat for 3 days starting to slowly eat today , trying my best. finding it hard at home getting laundry done and tidying up even a little bit. My son has ocd related to his ASD so not doing things the way we usually do is hard on him too. My poor husband is overwhelmed trying to work then comes home and needs to do all the stuff here too. We don't have family to help us around here, I'm relying on my senior neighbour when I can…have to learn to ask for help which is something I'm never used to doing. I was always the one taking care of everybody, doing everything for everybody. I hope I start to feel back to normal soon. When did you start feeling better after a cycle? Is the 2nd cycle easier or harder?
did I mention we had a small house fire on good Friday too? Now dealing with restoration and insurance company on top of the rest of it.
Original Message:
Sent: 04-19-2025 15:10
From: BennieTBear
Subject: New here
@Meinvan Holy cow that is crazy! You are amazing to be taking it all in stride like that.
The reaction to the carbo IS very common. I reacted the first time as well and it was scary. The nurses tried to prep me and said if you have a reaction, don't panic. Well! I panicked. My second round I also had a reaction, but I knew what was happening so didn't panic as much. It was also a worse reaction than the first one, so they gave me Ativan to calm everything down. I don't remember anything else about that treatment... not even the car ride home. It was great! Because I reacted to it twice though, they switched me to Paclitaxel NAB (abraxane) and I had no issues with that one.
Original Message:
Sent: 04-19-2025 11:47
From: Meinvan
Subject: New here
Morning ladies,
'well had my first dose off chemo on Thursday, went fairly well ,except I did have the severe reaction to starting the Pax, was not a fun feeling to experience that, thought I was going to be hearing a Code Blue called before passing out. But I came thru it ok, I'm told about 50% of us experience the side effect with that one. No nausea at the present time. Friday was a beautiful day in BC, I went to get my group and screen done for my blood transfusion I am getting today. Was able to come home and sit out in the sunshine for a bit and managed a nice walk around my complex. Shortly after that the day went down hill, my hubby and son are both sick since Monday of course so trying to keep clear of them the best I can, son has a fever and sore throat. Well shortly after my walk my son is texting me telling me he smells smoke, I thought it was maybe someone cooking or bbq ing outside. Then a little while later my hubby texts me that he can smell smoke too so I went inside the house and there is smoke coming in thru the ceiling in my basement laundry room, could see any flames or charring, fuse box looked ok, the wall goes up to the kitchen and front door. Told hubby to call 911. FD arrived and checked the whole house for a hot spot couldn't find anything in house then walked outside found increased heat by the front door on the outside. So they axed around my stucco and front door area and found some wood frame smothering, opened up inside wall and ceiling by front door as well, looked clear there. They weren't able to find anything electrical burning in the area, the only thing there was the doorbell wire which I think they cut when they opened the wall, so they capped that off just in case. In the end they couldn't determine the cause of the fire, called it a 'fluck'. Now dealing with insurance and restoration stuff on top of my chemo. When it rains it pours! Off to blood transfusion today. This is how we roll over here, nothing ever goes smoothly and if we do things we do them well!
Original Message:
Sent: 04-17-2025 10:03
From: Alwayslearning
Subject: New here
Hi @Meinvan. You may be in your chemo session as I'm typing this. I think @LeslieA provided some wonderful, sage and recent experience advice. The first infusion is tough mentally as you have no idea what to prepare for however, if you keep notes of how you feel/side effects etc. each day following, you will build a story of what you may expect going forward. It was a wonderful piece of advice I gleaned somewhere along my journey. I was told that how your body reacts to your infusion is typically how it will react for additional ones. There can of course be minor differences but overall, the advice held true for me. It was very helpful as I knew for infusions 2-6 the pattern of what my body would typically go through e.g., when my face flushed on day 2 & 3 it didn't freak me out when it happened during times 2-6.
I agree with @LeslieA that the cancer care nurses are amazing. They have seen it all and know how to react. You will be in good hands. Thinking of you. Please let us know how you are doing.
Original Message:
Sent: 04-16-2025 18:44
From: Meinvan
Subject: New here
Here's the update: met yesterday with the oncologist going to look at doing 3 to 4 rounds of chemo every three weeks and then we will rescan my abdomen to see if the tumour shrinking and then she will decide if we're gonna continue with chemo for a bit longer or if we're gonna go to surgery at that point and then more chemo obviously afterwards. I had my lab work today. Haemoglobin is still like 82 so I'll probably get a transfusion tomorrow. She wants my haemoglobin over 90. We also sent off for genetic testing so that they can monitor things in the future if there's anything that comes up. @ Always learning you were corrected as a high grade serous cancer, with lots of peritoneal deposits apparently. she said that when they did the lap on Friday, it looked like it was my left ovary where it started, but also said my right was looking abnormal. Going to be starting chemo tomorrow. Hubby has a bit of a cold this week so I hope he doesn't give it to me. I feel like I'm fighting a little bit of something in my throat. Anyways hopefully I don't wake up sick tomorrow and I can start the chemo and it goes well. Not gonna lie I'm scared about starting chemo, but I don't seem to have any other choice to deal with this.
Original Message:
Sent: 04-15-2025 15:33
From: Meinvan
Subject: New here
Thank you for the support
Original Message:
Sent: 04-15-2025 11:25
From: Alwayslearning
Subject: New here
Hi @Meinvan. I'm so glad you finally have some clarity although I honestly hate to welcome you to the club. I can say however that the Teal Sisters here are amazing for support, advice and strength. I can't imagine 9L of liquid! Glad they could reduce that significantly. If you have the most common OV cancer it is likely High Grade Serous however they will give you all that information today at your appointment and should hopefully be able to tell you stage as well. I'm thrilled they got you in for today. The waiting is the worst part. Having a plan is so helpful and I'm sure you will have a path forward after your meeting today. I hope your post procedure recovery is improving each day. Please keep us posted on the next steps in your journey. Sending you positive thoughts.
Original Message:
Sent: 04-12-2025 14:35
From: Meinvan
Subject: New here
Morning ladies! Well finally yesterday went and had my laparoscopy done, dr. Was able to remove 9 litres of ascites fluid off of me. And was finally able to get the positive pathology we have been looking for after the 4th biopsy, so she was able to confirm the ovarian cancer, told my hubby it was the most common type to have but he didn't know any more then that. After that finding she was able to speak with the cancer clinic where I will be going and they rescheduled my appt for initial consult Tuesday instead of after the Easter weekend, so moving forward finally! I'm guessing an ivad will be next? Home recovering now, a little painful to move and bend still today hoping that gets better by tomorrow, peeing burns a little hoping that will be gone soon too. Dr gave me 2 weeks on apixaban as well to prevent dvt's due to the high platelet counts. Now onto Tuesday and next steps for starting chemo! I'll keep you posted. Thanks for being here and reading my journey.
Original Message:
Sent: 04-05-2025 17:35
From: Alwayslearning
Subject: New here
💗
Original Message:
Sent: 04-05-2025 17:23
From: JoanEG
Subject: New here
"Not statistics". My cousin was diagnosed with stage 4 HGSC 9 years ago. After chemo and surgery she was part of a trial for Olaparib and has now been cancer free for 8 years!
Original Message:
Sent: 04-05-2025 09:24
From: Alwayslearning
Subject: New here
@lbarr72 I love your comment that we are, "...obviously not statistics, as many sisters have proved them wrong!". You are absolutely correct considering the many survivors and warriors in this forum. Thank you for the reminder. My son's fiancee is a PhD student in molecular science and her field of study is Ovarian Cancer. She likes to remind me that the online statistics are not to be taken as the gospel. They are often comprised of information on a more 'global' basis and can be very misleading. I prefer instead to read the amazing stories of survival and endurance from our Teal Sisters. That is where the truth exists.
Original Message:
Sent: 04-05-2025 08:54
From: lbarr72
Subject: New here
How frustrating it us to find out the diagnosis! When I first met my gyny oncologist surgeon, he said that he was 99% sure I had OC, but that couldn't be confirmed until biopsy was done. I had 2 options a) come back and do external biopsy or b) full debulking surgery with port inserted to abdomen, then 6 rounds of chemo to follow. I chose b) because I was so sick and in pain that I knew I needed action. CT had confirmed masses and a cloud of cells in my peritoneal already. As scary as it all sounded, I wanted action that was a strong fight. Staying nourished, especially with protein ahead of surgery was a challenge with little appetite, nausea and weight loss. However, you get into battle mode and do whatever you can.
I am glad you are taking action. Once recovered from surgery ( 2 weeks in hospital plus another week, 6 days later due to blood clots) I felt sooo much better. Fortunately, chemo wasn't too hard on me, although one was adjusted to lesson the neuropathy in my feet. Hair loss of course. My scalp did hurt prior to the big loss. I shaved most of it off to avoid dropping hair everywhere. Missed my eyelashes and nose hair filters though !! Who knew it was so needed !!
Sending you lots of positive energy to apply to your battles ...everyone !
CT coming up May 1st. We are obviously not statistics, as many sisters have proved them wrong !
Bravo ��
Original Message:
Sent: 4/5/2025 8:25:00 AM
From: Alwayslearning
Subject: RE: New here
@Meinvan I can't believe the journey you have been through. I am thankful you now have a plan forward however can only imagine how frustrating all of this has been. April 11th will feel like an eternity away and then it will be fast approaching and upon you. Stay tough and strong. You've managed this so far. You've got this!!!
Original Message:
Sent: 04-04-2025 18:57
From: Meinvan
Subject: New here
Change of plans yet again. I did my MRI yesterday, This morning the gene oncologist called to tell me that my uterus is fine just fibroids, that cancer is still pointing to ovarian with peritoneal deposits, but of course without a positive biopsy the oncologist will not start chemo until we have an official diagnosis, stage,grade etc…So she gave us 2 options for next steps: 1) do IR guided biopsy again and hope to get ovarian cells. Or 2) go back to OR for a laparotomy to look around, do more biopsy's and drain the ascites. She said while in OR she will get pathology to look at samples before ending surgery so we will know if we have cancer cells in samples.
obviously I'm going with option 2. She said she has never had anyone that has taken so long to diagnose. This will be the 4th attempt at biopsy. Surgery will be in April 11th, after this we should have an idea of what's next. Chemo if we can confirm the type and surgery if she still can't determine the cancer. My appt with Cancer agency was bumped till April 14th from the 7th I guess cause we don't have anything confirmed yet.
thanks for being here and supporting me thru this.
Original Message:
Sent: 04-01-2025 15:10
From: Strongwoman
Subject: New here
@Meinvan Welcome to the group. April 7th is approaching fast and hopefully any anxiety as well. Sounds like you have some plans on the go depending on findings. Going straight to surgery may not be a bad thing and may be the answer you are looking for. Hoping you get answers at your next appt as you wait and are writing your questiions down for them. Hoping that MRI gets booked and done sooner rather than later. Sounds like you are ready to go no matter what the outcome. That is a good attitude to have. We are all here for you as you wait. Perhaps you want to join our Teal Thursday chats to ease your mind. I will be doing a check in to see where everyone is at and how they are doing. It would be lovely to have you join us. Look forward to your updates. Take care of you!
Original Message:
Sent: 03-26-2025 15:54
From: Meinvan
Subject: New here
Well busy past few days here. Thursday did the Paracentesis but the radiologist only took 50cc of fluid for diagnostic, so no relief from ascites and edema. Monday morning went for An endometrial biopsy with sedation, much more comfortable then doing that in the office. Yesterday oncologist called to say that peritoneal fluid was negative and endometrial biopsy was negative so we still don't have the confirmation of the ovarian cancer yet or any type for that matter to start chemo. She decided to do an mri now and if we still can't find it with the mri , she suggested we may just go straight to surgery to remove the tumor first. So now I wait again to hear about the mri date. Next appt with cancer agency is April 7, so hopefully mri is done before then so we can get our plan in place and get the show on the road.
Original Message:
Sent: 03-25-2025 07:49
From: mcb
Subject: New here
Hi Meinvan,
Im sorry you had to join us here, but Im glad you found this group.
I dont understand what is taking so long in your case and others. I was seen in the ER in small town Ont last May. Over the next 2 weeks I had ultrasound, CT, 2x MRI and met with the surgeon. Surgery was a month from the ER visit and chemo started 3 weeks later. Your symptoms are even more indicative than mine were.
I hope your assessment has given you a clear path forward and relieved some anxiety.
Original Message:
Sent: 03-15-2025 22:08
From: Meinvan
Subject: New here
Hi,
I just thought I would introduce myself here, so here it goes. I am a 52 yr old mom (53 tomorrow) to an 18 yr old with ASD, he is my world and I am his. I have been a nurse for 31 yrs most of my time working in critical care. I live in BC. As of Feb 17th, I am now an ovarian cancer fighter.
Last Feb 2024 I went to my GP with new symptoms of small spotting and small urine incontinence. Thinking it was probably perimenopause given my age no investigations were done at that point. Gradually, over the past year the incontinence became worse, started having episodes days a month of extreme fatigue, nausea, loss of appetite and pelvic pains around ovulation time but I continued to think menopause would happen at some point and everyone's body reacts differently and this was how mine was reacting to the changes. Well, fast forward to this past January when I got back to see my GP where we discussed my ongoing symptoms and weight loss. Did a pelvic exam and felt a large mass, hoping it was just a fibroid I was sent for lab work and an ultrasound. The ultrasound wouldn't be booked for a month. I got my lab work done and I was severely anemic, started iron pills, and my CA125 was 675. Mid February, i got my first CTabd/pelvis which showed the large mass 15cmx 12cm,15cm sitting above my uterus. There was also peritoneal malignancy seen, with large ascites. Since then, I had a ct chest to rule out lung Mets, luckily just some nodules seen but didn't look cancerous at this time. I went for a biopsy of the mass but it didn't show any ovarian cell's just uterine and endometrial benign cells,so really undiagnostic. Currently, i am up 10lbs in fluid from the ascites and have lots of swelling/edema to my lower body to my feet. Most of my discomfort comes from the swelling that there seems to be no relief from. Now, i am waiting for my first visit with the cancer agency to be assessed on March 20th.
Well, thank you for being here as i start this journey. Any tips or tricks are welcome. Trying to stay positive for myself, my healing and for my family.
Thanks for reading.