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).

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  • Hello
    I had my chemo via the abdominal port at Sunnybrook 2018. No problems with this treatment.Easy Peasy access. I believe it was the game changer for me!
    I had a temporary ostomy and significant weight loss! Some foods to try to help thicken output…tapioca with protein powder (my staple), potatoe chips ( can binge guilt free).
    I am Cancer Free, just had my 5 year anniversary since my debunking surgery!
    So wonderful to have great family support. 💕

    I am open to connecting on Facebook if your mom wants to reach out
    Sharon Vanderburg

  • Strongwoman
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    @SM222
      Hello and welcome to our site. Today at 1pm we host what is called Teal Thursday. It is an online forum to discuss whatever is on your mind and are feeling that day.  To join, just find the discussion which should be the first discussion thread on the site. You will need to refresh your page to see any new posts from others posting.
      Now that I have said that.  I am truly sorry to hear that your Mum is going through this.  It is all difficult to receive the information, process it and continue on healing at the same time.  There is a free book available to you which is called By Your Side and is available in both paper and digital form.  Here is the link to it: Ovarian Cancer Canada - Support and Resources (ovariancanada.org)
    It was very helpful to myself when I was diagnosed 2 years ago.  I have primary peritoneal cancer which is treated exactly the same as Ovarian Cancer.  I was 49 years old when diagnosed and have LGSC and was Stage 3C.  Many of the ladies on this site are HGSC as it is the most common type of Ovarian Cancer.  
      As for the eating, I will contest that I had much difficulty after my surgery with eating.  I ate very small amounts and slowly built myself up.  I had difficulty swallowing which I attribute to the tube being down my throat during surgery.  I craved things like melon as it was soft and full of moisture.  In the beginning, it would probably take me an hour to eat my breakfast, believe it or not. I would have my fruit first, then a yogurt and then an Ensure.  That was my routine for breakfast for a long time.  I eventually graduated to some oatmeal and found it did not take as long to eat.  Dinner was as slow to come as breakie and I stayed with safe things like rice with some sort of broth.  I had fish as my first meat and built up.  I still have difficulty with beef to this day.  I, for one, can say that using a powdered Veggie Green (which I found at Popeye's) helped immensely.  It can be mixed with water and does not taste bad.  In fact, I currently don't have an appetite in the morning so I have my Veggie Greens, Restoralax mixed with water with my meds.  I also found using a protein powder helpful instead of the Ensure.  In the beginning, I would get full easily and that took time to overcome.  The diarrhea, yup, check, can say I had that.  So bad one day, my Mom was here to help take care of me and I didn't even make it to the toilet.  Came out all the way to the bathroom.  But seeing as she is my Mom, she got me all cleaned up and then cleaned it up no problem.  Exactly how you stated it "manhandled" is how I felt.  Like they took a handful of my insides, threw them to the side and then stuffed them back in.  My insides were not happy for a long time.  It will be trial and error with your Mom is all I can say.  I had difficulty with getting the gas to pass both burping and flatulence and found that ginger helped a lot.  Walking daily helps a lot and with strength. Short distances with assistance and then eventually without is good as well.  Those are a few things to get you started.  Throw out any questions you have.
      As far as the treatment (chemo) that your Mom will be receiving the ladies with that type of cancer will be best to answer that.  I had one round of chemo which was Carboplatin and Paclitaxel for 6 rounds.  It was a journey that is for sure!  The port will help and I found I did not feel as ill when I utilized it for treatment. 
      Your Mum sounds like she is doing amazing.  I will write more later and hope you can join us today.
    I have to run and get my message ready to start the chat today as our usual Moderator may be a bit late today to start it.
      Glad you found us and steady and slow is how it goes initially!
  • Strongwoman
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    @battleoflife12018
     A BIG congrats on your 5 year NED celebration!  How wonderful for you!  I am excited and in awe of how that must feel!  So wonderful and a journey in and of itself.
  • Thanks
    so grateful for my health care🙏
  • @battleoflife12018. Congratulations  on your 5 year mark!! Such a milestone.  May you stay strong and well
  • Thank you for your kind words
    Sharon
  • SM222
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    Hi @battleoflife12018 thank you so much for those tips! I can't believe we didn't think of potato chips, I got some for her yesterday and she loved it! She started her chemo on Friday, so said she will reach out to you via facebook sometime next week. Thank you so much for your kindness <3 And a huge congrats for the incredible milestone! 

    Hi @Strongwoman thank you so much, the veggie greens sounds like a great alternative. She hasn't been liking ensure so I will also try another protein powder instead. Thank you again for these great tips and resources. She wasn't up to attending the teal thursday last week, but will see if shes up for the next one. Thank you again, I have ordered the book as well. Hopeful that the port will make it easier for her. Thank you again <3 
  • HelloTeal Sisters!  I had a hysterectomy and bilateral oophorectomy in July of 2018, revealing that I had high grade serous ovarian cancer, stage 2C.  This was followed by IP chemo, September through February.  What a stressful time!!  A few months later, with my new chemo curls, my mood greatly increased.  I gave up hope of being "cured" when diagnosed with a recurrence in June 2022.  (Apparently I was fortunate to go that long??)  I did 6 cycles of carboplatin, July - December, 2022, followed by a CT scan result of "all clear" . . . . . for now!  I am currently on my 4th week of Zejula, 100 mg, which is going well thus far.  If my blood work is okay I will go to 200 mg next week.  A little nervous about this drug, but overall, life is good!
  • Strongwoman
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    @CrazyCat
      It sounds like from your post that you have had both some ups and downs.  It sounds like you are in an "up" cycle. I bet it feels good. I would like to believe that inside all of us there is a little 'nervousness' or 'anxiousness' that we feel even when things are good.  It would be difficult not to given what many of us faced and have gone through up until that point.  Now, on to that, go do YOU!  Find those things that make you happy and bring you joy and enjoy them. Do things that due to treatment etc you were either unable to or were restricted by and find a new outlook of how it feels to do them.  I wish you the best journey from here on out. Keep us posted from time to time and/or join us for our Teal Thursdays.
    Take care of YOU!
  • @CrazyCat
    I know the mental ups and downs are stressful.  Do you! I know my daily outlook has changed so much since diagnosis.  Try to not worry about tomorrow because you would miss today's joy.  You go Teal sister! You got this.
  • ButterflyGirl
    edited April 2023
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    Hello!! I am a mother of 2, married.
    On March Break I did a TV Ultrasound to see my IUD and I found in my left ovary a Multilocular cyst with thick septations, and peripheral vascularity.
    Doctor call me and had a conversation and asked to do the CA125 asap. I am only 34 years with cancer in my family for breast, lung, intestine and my brother with leukemia. CA125 returned negative but I believe its to early to catch any antigen in the early stages.
    Waiting for the next TV Ultrasound in April 18th.
    Someone has the same story? I thought I had to be referred to the GO Right away.
     I also was diagnosed with Endometrial Hyperplasia at age 30 and I am in use of IUD to control my heavy periods.
    Thank you


  • Strongwoman
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    @ButterflyGirl
      Hello and welcome to our site. Your post has multiple concerns and I will do my best to assist you.
     If I am reading correctly, your topmost concern is that the  TV Ultrasound showed something and you feel it is being dismissed and/or not being given the attention you feel it needs. Is that a safe statement to say?
     Surprisingly enough most Ovarian Cancers are not hereditary in nature. I learned this recently and was quite surprised. I do understand your concerns with other cancer types present in your family history as many of us have shared those concerns initially as well. Despite having my tissue being looked at twice there were no findings to support that nor could they find anything definitive to perhaps assist with targeted therapy. I knew going into it that there was a high probability that findings may turn up nothing. 
      Regarding CA 125 levels most Oncologists do not rely solely on these number markers. They can vary greatly and can have little to no impact on direction of treatment.
      Are you currently experiencing any symptoms or did you prior to your TV Ultrasound? Are you experiencing issues with your IUD?  
      Referrals to Gyn Onc (GO) are not automatic (to my knowledge) in the presence solely of an initial concern. I believe more common protocol is waiting and watching and repeating imaging if an issue is presented. This may not comfort you but is the reality especially in absence of symptoms and/or medical markers. Most of us on this site have not known we had our disease until an alarming symptom presented itself. Some have been fortunate to have it diagnosed early but again I believe with presence of symptoms of some sort and some unrelated to the gyno system itself.
      Like myself going to ER with a GI bleed (which I did not even know that was what was occuring) to first be informed it was colon cancer (after colonoscopy) and then biopsy returning with markers for Ovatian Cancer.
      I understand your concern and my advice would be to write down any symptoms and menses (period) related issues until either your next physician appt or if imaging is being repeated. 
     I hope this helps you some and puts your mind at some ease.
    Take care of you!
  • Hello Teal Sisters,

    I’m 36 years old, a mom of 2 little boys, a wife, an engineer, a coach, an artist, a shower-singer, and a change management advisor. 

    I recently also became an ovarian cancer warrior and writer, as I started blogging my journey. Check it out if you’d like! www.OCwarriorQueen.com

    I’m using this blog both as a means to externalize what I thinking, feeling and experiencing, and also to spread awareness.

    I started experiencing, what I now realize were milder symptoms of ovarian cancer, in the spring/summer of 2022. I thought I was developing IBS or IBD.

    It wasn’t until February of 2023 that my symptoms evolved into more “specific” symptoms and after doing some research, I am realizing how lucky I am that I listened to my body and went to my doctor. 

    I had lost weight, was having severe cramps, and pain after intercourse, my blood pressure was really low, with a hight heart rate, and I started to bleed 10 days earlier than I usually would. All of this together was sounding a 1000 bells and thankfully, this led to an ultrasound, which then led to an MRI and that led to be receiving the famous “come accompanied” call from my doctor on March 28th. A 8-10 cm mass was discovered on my left ovary.

    I then met my oncologist on April 5th, had my surgery on April 20th, where the mass was removed. It had grown to 15 cm! 

    I had my post-op appointment where we discussed the biopsy results and a treatment plan. The good news is that no other tissue that was biopsied, other than the mass has cancer cells. Everything was contained within the mass! The biopsy of the mass itself revealed High-Grade Serous Cancer, with an insignificant presence if neuroendocrine cancer cells. Because of this extra “surprise”, a few other tests have been scheduled. 

    It’s odd to say the word “lucky” in the same sentence as cancer, but I truly feel lucky and grateful that the cancer was detected early, and swift action was taken by my medical heroes, two amazing women to whom I owe my life: my family doctor and my gynaecologic oncologist!

    Since HGSOC is an agressive cancer, I will start chemotherapy on the 31st of May. It will consist of 6 rounds of carboplatin/taxol, 1 treatment every 3 weeks.

    If you have any tips on managing and y with hair-loss, as well as chemo side effects, I’m all ears!! 

    Thank you 🦋

  • Fearless
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    @OCwarriorQueen welcome to our community and so glad you found us.  Establishing that blog is an excellent idea.  Writing is great therapy for you and sharing your journey will help inform others and expand awareness.  
    Have you accessed the Ovarian Cancer Canada website (ovariancanada.org) yet.  Being new to this disease it's sometimes difficult to sort through all the information out there.  But you can be assured anything on the OVC site has been fully vetted for accuracy.  I do recommend, if you haven't already, order the booklet OVC produces called By  Your Side.  It's an excellent resource to inform and help guide you through the disease.  And given your age you may want to connect with other peers through the monthly Teal Tea for young survivors. I post the schedule for that here on our discussion board or you can obtain it from the OVC website.  We also run a weekly get together every Thursday at 1pm EST that is online but real time in discussions called Teal Thursdays.  Anyone is invited to attend and you can join by just signing in to OVdialogue and then clicking on the topic Teal Thursdays.

     I hope some of this helps.  I can assure you there is hope out there for us; for cure and if not, for learning to live with the disease.  I'm an example of someone who has recurred several times so considered incurable but who has extended themselves from a prognosis of 3 years to an actual of 7 and still going strong.  Just know that no matter what chemo brings for you you're not alone.  Our community here is over 1000 strong and sending their prayers for successful treatment for youu.
     <3 
  • Strongwoman
    Strongwoman Moderator
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    @OCwarriorQueen
      Welcome to the group and thankful you had an early diagnosis (as per your post).
      I too write but not publicly and is part of my Legacy work.
      Chemo treatments can affect everyone so differently that it is difficult to respond specifically.  Letting your team know how you feel afterwards can help in discovering medications that may assist in decreasing side effects.  I found my 2nd treatment the worst of the 6 of them. After that we had the right regime for me that worked. Resting is important and walking when you feel well enough is good as well.  Your team will guide/advise you through your first one.
      As for hair loss, I wrote a post entitled 'So they say it is just hair'.  You may find it helpful.  My scalp hurting was the worst part of my hair loss.
      Most important, make sure you have supports around yourself and the family for when you don't feel well. You are sounding like you are doing well thus far.
      Reach out anytime and/or if you have any questions you can't find the answers for.
      I will be thinking of you on your first chemo day.
  • LynneA
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    As others have said your experience with Chemo will be unique, but I wanted to share that I found that CBD oil was a great help with the leg cramps I had 2 days after each cycle.   It was prescribed for me and I found it also helped me relax and sleep better.   Losing my hair was an adjustment but it was also freeing in many ways.   I found I preferred wearing soft bamboo hats rather than wigs.  Do what works for you. 
  • @OCwarriorQueen I had 6 chemo treatments , 3 prior to surgery and 3 after.  I felt really good chemo day and the day after. The third day of my journey was the hardest.  I have to agree that I was anxious about my hair loss but it was quite freeing. I was diagnosed a month before covid shutdowns and I rocked my bald head proudly as the "sunshine room" was closed.I found there are many things that help with managing discomfort and you will find what works for you.  I am approaching 3 yrs if remission (July 23rd)  and feeling great.  
    We all share this journey with you, and together we are strong.  
  • HW711
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    Hello Teal Sisters,

    I am 51 years young and diagnosed in March 2023 with grade 2B high grade serous. It was a long and arduous process getting diagnosed as my symptoms were super subtle at first for years with bloating, indigestion and constipation, and my gp at the time didn’t take me seriously. I never really had pain although I felt lethargic the last few months before being diagnosed. My tumours were 16 cm on the right and 10 cm on the left, and I could literally feel the big one growing daily before surgery.

    Looking forward to connecting with you ladies as nobody in my family can understand how lonely it is to be on this side of the diagnosis. To be fair they try, but only those in our shoes can truly understand.

    I’m currently at 3 out of 6 rounds of chemo (carbo/taxol). Losing my hair was the hardest part for me but I’m better with it now. If anyone has any tips for getting through the latter part of treatment with less side effects I would appreciate any and all feedback, as I am experiencing more significant issues as time goes on, and they tell me it is cumulative.

    Thank you💕
  • Strongwoman
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    @HW711
      Welcome to our Teal Sister forum and sad to hear of your diagnosis, not being taken seriously and the current feelings and effects of treatment you are experiencing currently.
      You are correct, they can't understand fully what it is like to be in our shoes. Is there a situation or something in particular you are referring to that they aren't understanding fully (if you would like to share)? Perhaps we may have some helpful tips.  It is a difficult process and the ups/downs we go through while having chemo is another one.  I was around the same age of yourself upon my diagnosis.  It is difficult, often we are the ones they run to with issues, working or not working because of becomes difficult and hardest of all is they don't want to picture us ill like that and don't know what to do with it.  My family took awhile and it is only this recent news of progression that is making them realize what we all may be facing sooner than we all want but hopefully not.  In the meantime, I carry on. As for you, make sure you express how you are feeling especially when you don't feel well. Try to put in best terms you can and relate it to things they can understand.....like you know the feeling you get just before you are sick, headache, body ache like with flu, etc.  That has helped me when I describe things to my crew. Hope it helps you too.
      As for getting through the latter part of chemo, I chunked mine down and when I reached the half way mark, kind of celebrated in my head, then when it was the 2nd last one I focused on it and then of course the last one and the ringing of the bell is it!  Symptom management for me was under control after my 2nd cycle and we didn't have to tweak it after that.  I had to take Dex a couple days after treatment to get me through some of it and it did help.  
      Yes, you are correct the effects of chemo on the body is cummulative and the body 'remembers' as well. So the more chemo treatments you have the symptoms can worsen and for some they don't. Work with your team and figure out what works best for you. It is what I did.
     We are here anytime you need to reach out.
  • HW711
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    @Strongwoman Thank you for this info and I’m so sorry to hear of your recent progression. 

    I guess I feel like my family expects me to be strong and beat this, and then go back to normal like before, but what I don’t think they understand (or maybe don’t want to) is the high chance of recurrence and the low survival rate for OV CA. I try to keep positive and they keep telling me I’m so strong etc but some days I don’t feel like being strong, especially when I’m feeling gross after chemo. 

    Like you, my docs have decided to add some extra Dexa so hopefully that will help me get over the worst of it right afterwards. Hoping this is the tweak that is needed.

    I am trying like you said to chunk it down and reward myself in a small way after each mini milestone or session. 
  • Strongwoman
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    @HW711
     I found that part difficult as well. I found I had to be honest with them. Say things like "I know and understand where you are coming from and I am strong and brave. What you need to realize is that I am going to have down days and days I don't feel well and that is ok. It doesn't mean I am not trying, it means my body needs a rest and I have to learn how to listen to it. When I am like that, I need you (or whomever) to help out and listen. That can mean helping getting me something to eat, doing dishes, laundry, putting something in the oven etc. Can you do that for me?  Do you understand? What more would you like to know about what I am going through?"  Things like that can be useful of course it is age dependent.  The most important is that they don't want to think that you have 'given up' or 'aren't trying' as we have been a certain role model for so long it is quite often difficult for them to process. My boys will be 19 and 24 this year and I was diagnosed in 2021.  One time, I literally 'lost it' on my boys because I was so sick and they were not doing anything including checking on me. I am not proud of the moment but it was necessary especially when we don't feel well.  I am sure you will come up with something to discuss with them. I told mine, it is an opportunity to hang out with me when I am not well and watch tv (while I fall asleep) or to be part of my team with my illness. Both boys know how to call my Nurses should anything happen (and have done so) and where to find my notes on what I am feeling and what I took. I usually can't talk well when I have episodes.  They know where my kit is at home for the nurses as well. It is good and I am glad they understand and aren't afraid of calling. It helps them too, I feel.
      I hope some of this helps you. You need to find what fits right in your situation with your family.  I know you can and will do it. It takes confidence (which I am sure you have) and the patience to discuss things with them as they are very fearful behind all the rest of what you see.

  • Hi I'm Paula. My teal sister is my real sister, Lindsey. Anyone know about staying on Lynparza past 3 years in Alberta. She's cancer free as per her last CT - hooray! - so they are stopping it - unless she can pay out of pocket. But when I inquired about compassionate pricing, her oncologist said there was no medical case to be made. I'm grateful that she's doing well, almost 4 yrs past stage 4. Thanks - and love to all of you brave folks out there!
  • Strongwoman
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    @paulaholmesrodman
      Thank you for sharing your post and Congrats to your sister and her NED status currently.  She must be over the moon! Hope she is able to make the most of this new found freedom from appts and treatments and finds some enjoyable and memory making activities to do!
      Again, thank you for the encouragement and the updated post. <3
  • Hey thanks for reaching out! Yes it feels amazing! ( but somehow it's hard for me as her sister to release the worry, but I'm working on that. ) One day at a time, get out in nature, all that good stuff.
  • LynneA
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    I will finish lynparza in November after 2 years.  I had stage 2 HGSC with 6 rounds of chemo.   Feeling good but nervous about ending the Lynparza (also eager to be done with side effects)  Fear of recurrence makes it difficult to relax.  How do others cope with it?
  • Hi Lynne. I know my sister finds a lot of peace in keeping a routine and also being as active as possible. I hope you have a good support system around you. Also, we send ALOT of cat videos and general silliness back and forth. 😊🐈‍⬛
  • Strongwoman
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    @LynneA
      Good question! Also happy when a chemo regime has finished amd there is no treatment. 
      I, personally, don't think the fear of recurrence goes away.  I felt it always lingered there somewhere in my head. What got me through was embracing all the things I could return to doing and as I kept feeling better what more things I could do
     I decided to make the most of it, enjoy anything and everything I wanted to soy family could see the "fun" and "healthy: me again and feel some normalcy. I knew I had a high recurrence rate but went with what I was dealt until I had to deliver the news of recurrence to the family again.
      So my advice, go enjoy life again. Make the most of it and enjoy even the small things...like the return of hair if you lost it
     Smile, feel the sunshine on your face and basque I'm the glory of "what is".
  • RobinD
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    I am in the same boat. Finished Lynparza in May after two years. Really hard not to stress. Rely on my three month CA125 tests. Otherwise, I try and live my life while I have it! Even before I got sick, life was always going to be precious, I try and see it the same way and be a little fatalistic. I can't control recurrence so why bother worrying? Of course, easier said than done! Now if there was some advice on what to do, apart from the obvious (eat well, stay active etc) I'm always hoping they will come up with a vitamin or supplement one could take that would help...Green tea anyone?
  • Strongwoman
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    @RobinD
      Yes it is difficult. Hope some of my last lost might help you as well.
      I also continued with my Legacy work which helped. It was and still is very important for me to complete. I want to ensure that I have all the things done I want done/left for people so that if I ever got to a point where I couldn't do things anymore, I would be at peace knowing I have them completed. My mind could rest and could then focus on conversations etc instead of worrying about what I hadn't completed.It is amazing how much "stuff" I have to complete but am glad and feel blessed I have so many I want to thank and make sure I don't miss anyone.  Especially with my boys being young, I want to make sure they have little pieces from me they can look at and keep in the future. Tears happen sometimes while doing it but it's OK. Laughter is just as wonderful.
      So go enjoy and if you are doing Legacy work, get working on completing it.  It will occupy your mind and time.
  • LynneA
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    Thanks everyone.   That helps.   And God bless cat videos!