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 (

Let's get started! Come and introduce yourself



  • jiselle16
    jiselle16 Peer Support Vol
    @Kohal I am so sorry to hear you may need to have your other ovary removed. I too was in a similar situation when I initially had a cyst removed from one ovary, only later to find out it was cancerous at age 31. Even though it was an early stage cancer, I decided to remove both ovaries and have a full hysterectomy, which put me right into surgical menopause in my early 30s. I did have some hot flashes and night sweats not long after surgery, but thankfully they weren't too bad and have subsided with time. Menopause brings with it a whole host of gifts, from mood swings to hair loss, but 5 years later I am still living an awesome life! I've found the biggest issue for me is that I feel warm all the time, like my internal thermostat has been raised up a couple of notches (wearing light layers is key for me). A good resource is, they also have a Facebook group. If you google "menopause", just be careful as surgical menopause is similar but different than natural menopause as it's an abrupt change. There are a lot of menopause resources out there, but not many focus on surgical menopause, so I found that website had a lot of good information. I have taken bio-identical hormones through my naturopath off and on through my 5 years since diagnosis, but for the majority of time I haven't taken any hormones and I've managed the symptoms quite well. I would definitely recommend you talk to your oncologist about this topic and they can also refer you to an endocrinologist. Feel free to reach out here if you have any questions. As @Fearless - Vol Mod mentioned, there is a Teal Tea (Zoom gathering) held monthly for young survivors, would love to see you at the next one and we could chat more!
  • jiselle16
    jiselle16 Peer Support Vol
    @sarah_lou It sounds like you've been through a lot, but I am so glad you found this site! As a young survivor myself diagnosed at age 31, I too can relate with the challenges of losing your hair and gaining weight due to the steroids. I found myself smiling when I read that you had found a wonderful new partner to accompany you when you get chemo. That is wonderful, and I'm so glad you have someone you can lean on. You can also lean on us teal sisters when you need support to, so that's why this site is such a good resource. I take part in the monthly Teal Teas for young survivors that Fearless mentioned, so I would love to see you at the next one so we could chat more. They are usually held the last Wednesday of the month. So glad to hear chemo is got this!  <3
  • Hi, I'm new to OV dialogue. I'm Kathleen, from Ontario. I'm 56 and was diagnosed with stage 3 high grade serous in September after many months of various tests. I had a total abdominal hysterectomy in Sept. and am now doing chemo - Carboplatin and Paclitaxel. through IV and IP port. I've finishing up my 3rd cycle with three more cycles to go (and totally fed up with it all!). I'm looking for support and encouragement and more information, and this looks like such a helpful website. I've stayed away from googling medical info on the internet, but hearing the experiences of peers, and how you've coped with cancer and the side effects, would be so helpful.
  • Strongwoman
    Hi Kathleen.   :)
    Welcome to the group. Sorry to hear about your diagnosis and the feelings you are currently going through.  I was diagnosed in Feb of this year with Stage 3C.  I underwent major abdominal surgery and had a radical hysterectomy, omenectomy and debulking performed as well as a colon anastamose.  This was followed by 6 rounds of  hemo 3 wks apart.  I had a port put in and removed it in Sept of this year due to some issues I had with it. I am currently NED and my hair is growing back.
    What is it you are looking for in particular?
    Questions answered?
    Encouragement?  Venting?
    Put it out there and let's see what we can assist you with.  Everyone's journey is their own and all slightly different but we all go through some commonalities.  
    Chin found the right group!
  • Annie1950
    Annie1950 Peer Support Vol
    @Hobnob There's a period of information overload, like drinking from a garden hose, so hard to absorb it all.  You'll adjust to new reality and find that it becomes easier over time.  I too was diagnosed with stage 3 serous almost two years ago and after going through chemo and debulking surgery I've been disease free for over a year and hope for many years to come.  After chemo my hair grew back, my neuropathy faded and some normalcy came back to my life.  It's tough but remember it's a point in time.  I hope you have a good support system and I'm sure this site will be one of them.  Stay up to date with treatment, don't fall between the cracks and live life to the fullest.  You'll find your path and hopefully life will be rich:) 

    Wishing you all good things in 2022. 
  • @Strongwoman I don't know how to reply, so hope I'm doing this correctly. Thanks for your comment.
    My questions are about certain side effects. The most annoying one so far is the horrible metallic taste to everything. It certainly puts one off food. Eating is an obligation. Or I have cravings or something but it always tastes disappointing. Any suggestions for dealing with that?

    Encouragements: how do you keep motivated for each day (never mind cycle) of chemo? Each day is like a dreary 72 hour marathon, trying to manage the side effects. Also, I do live alone, so it's isolating, though I do keep in touch is many friends through phone, email and text  I try to keep a gratitude list, and go for short walks daily, and pray (my faith is very important to me), and carry on with familiar routines as best as I can, and focus on one day at a time, but often it feels overwhelming and depressing.

    What's the point of doing chemo if the cancer is going to return? I hadn't really thought about that much until I started to watch people's stories on this website, though my doctor did say my kind of cancer will most likely return. How do people endure doing e.g. 6 cycles of chemo again, and then doing that again when it returns yet again? I'm amazed at people's endurance to do this.

  • Strongwoman
    First Kathleen.....there is no right or wrong. What you feel, experience and have questions about are important and relevant to you.  This is what matters.  This group is here to assist with that.  That means...even being a sounding board for you.
    As for the metallic is a difficult one.  I craved salty things and sweets at times. Some say to use plastic cutlery which may help with the metallic taste. Eating is very important. It is harder to be under weight going through this. So eat what makes you happy and tastes right.  Only you will know what that is.  I found protein powder made into shakes with fruit helped when I didn't feel like eating. Does any of that help you?
    All of those things you said in the second part are very true and relevant.  It can be very overwhelming at times. I found it helped when I planned out my chemo visits and got to the half way mark.  That was like a huge relief to know I made it that far.....once I got to the 2nd last one....I knew I was almost finished which was encouraging.  Finding activities that you like helps.  I painted, knit, went for walks etc.  It would be very difficult to live on your own through this.  Would inviting someone close to you to stay a couple of nights right after chemo be an option for you?  It may help. Faith is important and am glad it is part of your healing.
    Yes, it may very well return.  For some, we don't know when and others may have more insight into that.  I know I have a 50/50 chance of recurrence.  I live for the moment and try not to dwell on that aspect.  One day at a time and every day is different.  I still get tired more than I used to but am mindful to remind myself I am not a year out yet for any of this. Just like being pregnant, it will take a year or more to get ones body back to some sort of normalcy.  It may never be the same pre diagnosis but who knows what the outcome will be.  I am thankful I am here and will make decisions around "what next" should I have to face that.  
    I hope some of this helps.  Reach out if you have any more thoughts/questions.
  • Kathleen I was diagnosed in May with stage 2 high grade serous.   I had surgery and 6 cycles of chemo.   I have recently started Olabrib which is making me very nauseous and tired.  I also wonder how I will ever find the strength to deal with a recurrence.   Some days it has been difficult to feel hopeful or find the strength for the next challenge.   But this fall I got to celebrate the weddings of two of my sons and that reminded me why I keep going.   Like you I also try to focus on gratitude. But making room for lament is also important.   I have found talking to my oncology social worker has really helped me through this.   If you have access to someone who can offer this kind of support you might find it helpful.   She reminds me that I am doing this for me and my future is not determined by statistics.   My path and yours will be unique and there is lots of good medicine and support along the way.   Including this group.   Blessings For 2022
  • Kathleen I was diagnosed with high grade serious in Feb 2022.  My prognosis was not great at the time.  I had 4 rounds of chemo. Complete hysterectomy then 2 more rounds of chemo which I completed July 23, 2020.
    I was also very worried about my cancer returning as statistically it is probable. 
    In November of 2021 my scans show no evidence of disease , it is a gift.  It took me a year to put the anxiety away and to allow myself to feel real joy.

    As I was working toward finding joy I  immersed myself in things that brought me joy , such as my sewing room.  I made a plan to complete quilts for all the people who I love and the friends that took this journey with me.  It  didn't allow me to focus on the negative thought as my mind was occupied.

    We all have our own journey.   For me it took a lot of making my mind quiet. Sometimes just sitting quietly and finding a purpose.  Not saying the thoughts don't creep in. They do. I just try my best to push forward and you will too.  

  • Sorry Kathleen my diagnosis was Feb 2020
  • @Strongwoman Thank you so much for your suggestions and comments. They really help.
    I do buy protein shakes which are helpful. As for someone staying...that's not a possibility for me, but I do keep in touch with friends.
    All the best to you in this New Year. 
  • @Annie1950 Thanks for your helpful comments. I'm so glad you are disease free!
    Wishing you all the best for this new year.
  • @LynneA Thank you so much for your helpful comments. I wish you all the best for your continued recovery and for this new year. That's wonderful you could attend your sons' weddings.
  • @NovaScotiagirl Thank you so much for your helpful comments. I'm so glad you are now disease free. I will try to keep pushing forward too :smile:
    All the best to you for this new year.

  • Fearless_Moderator
    @Hobnob, welcome to our community.  I'm so sorry about your diagnosis, as I am every time a new member joins us, most of whom are advanced stage, and finding the emotions they'/re feeling and the questions they have overwhelming.  

    I, too, am high grade serous stage 3C when diagnosed in early 2017.  Unlike others who have already commented and have provided some great suggestions and insights for you to consider, my cancer is recurrent. But I'm happy to say that while my statistical prognosis at the time was three years, I'm now entering my sixth year living with this disease.  That said, the past few years have seen exciting advances in research, treatments and drugs and I'm seeing more and more women living much longer with OVC like me, but also so many more who remain NED (no evidence of disease) past that five year mark and longer.  So there is hope on both fronts, even for those diagnosed at advanced stages; hope that initial treatment is successful and sustained long term and hope that a recurrence or multiple recurrences can be treated successfully.  

    As we talk to "survivors" one of the biggest issues faced is fear of recurrence.  Like so many others, when first diagnosed all I was focused on was getting it 'carved' out of me and getting pumped with chemo to destroy all the cells that might have been missed in surgery.  I really didn't think about recurrence when my chemo was done, just relief it was over.  Yes, like you those last few chemo sessions are tough. On one hand you're so grateful there is something there to destroy the cancer but on the other hand the exhaustion that comes from round after round of chemo and side effects.  Some days when I hear gals ring that bell in the chemo round as they finish their final treatment I wonder if it's out of relief that the cancer is gone or just that the chemo is over. So feeling as you do about the next three upcoming sessions is not unusual at all.  But for you, being alone is probably harder.  Even those of us with partners or family close by have noticed the huge difference as Covid set in and our major support is often no longer able to be with us other than through emails, face-time, zoom.  LynnA mentioned the support she gets from her local cancer care social worker. While i have my husband at home as ongoing support, and my son who has become incredible support albeit via regular zoom connections and phone calls, one of the social workers at my cancer center has been an enormous amount of support to me throughout my journey.  Having someone who not only gets the emotional roller coaster, but is also fully objective and non-judgemental has helped me with perspective and staying grounded.  Ask your oncologist or his team for a referral.  You're here in Ontario so most if not all of the cancer centres have a social work department attached to them and the counselling/support service is free.  I know I was offered the connection during primary treatment and now wish I had taken advantage of it earlier on than I did.  But it's often hard to admit you might need and ask for help.  

    As for staying motivated knowing one might never be rid of the disease, we're all different in what keeps us going.  For me, there is no fear of dying. My fear is missing out on all that I still want to accomplish and missing out on so many life events I want to share with my loved ones.  So I just stay focused on my life one day at a time.  And I stay realistic in my expectations.  I know my life will now never be what I had expected it to be.  I do have chronic neuropathy in my lower legs and feet that cause mobility issues.  So instead of fixating on the fact I can't walk 5km a day like I used to, I fixate on what I can do.  Chronic fatigue I"ve mastered now.  When my body says rest, I don't fight it. I rest. And I plan my days around the cycles of fatigue that I experience. This is all about living with the disease and understanding and accepting a new normal.  

    On a more practical note, if you haven't already, do order the booklet By Your Side from Ovarian Cancer Canada. Its a very helpful tool to learn more about the disease and guide you through primary treatment.  You can order it in both soft and hard copy at  And so use the Ovarian Cancer website as your primary educational tool.  Google and Facebook sites are fraught with misinformation, often just old wives tales or from unreliable sources. And take advantage of the other support events they offer.  Monthly face to face connections with other survivors on the zoom platform.  Online speaker series covering topics of interest.  An annual online two day Symposium. And if you're able, get involved in the annual Walk of Hope that is held in September. It's a great opportunity to connect with other survivors in your area, raise awareness of OVC in your local community and honor those Teal Sisters who have left us.  

    As for OVdialogue, this site is 24/7 access. The advantage is that all our discussions are archived so if you need immediate answers to a question or concern that my have already been asked and answered you need only type appropriate key words into the search box at the top right of the home page for access to former conversations on the topic.  If you'd like more immediate exchanges with members I'd urge you participate in our weekly live online chats. I host them at 1pm ET every Thursday. You need only sign into OVdialogue as usual and click on the discussion topic TEAL THURSDAY to enter the chat..

    I hope some of this helps.  Please reach out to us as needs arise, whether they be questions or a need to vent or just to know someone who gets it is listening and cares.  You are never alone in this community.  And if you need help navigating the site or direction to any other available resources, please don't hesitate to private message me any time.

    Good luck with the rest of your treatments. Please stay in touch and let us know how you're managing or where we can help. Our thoughts will be with you for a healthy and joyous new full of infinite possibilities.  

    And PS, I'm also a Kathleen.


  • @Hobnob Welcome!  I too am high grade serous, stage 3/4 (they aren't certain about lymph node involvement so leave me dangling between stages currently) .  and was diagnosed in July of 2021.  I've completed three rounds of chemo, (same drugs as you, through my IV port) with another six rounds for 9 total to go. I just had my fourth on the 31st so should finish chemo in May.  Also just healing up from a total hysterectomy with salpingo-oophrectomy, removal of the omentum as well.  A huge 55 staple cut up and down. But, you know, better to have it out than in! 

    It can be isolating to have this, to go through the motions and not know if the choices we make are right or wrong; if they'll cooperate to gaining life, or if they're the pivoting factor to ending it.  Scary, and not a an easy decision at any time.  I think it'll be a long time before I'm not scared anymore.  But I channel that every chance I get to meaningful conversation, love, and hobbies. 

    If you haven't read already, my top recommendation for a book is the Third Edition of 100 Questions and Answers about Ovarian Cancer. It's excellent and really breaks it down. Of course, the By Your Side book from OCC is great as well, and you'll have us all here to stand  beside you.  <3
  • Fearless_Moderator
    Kathleen, I'm just reminded that you said you were 56.  Not sure if this applies but we have a sub-group who participate on OVdialogue and in the monthly Teal Teas (live zoom chats) for Young Survivors.  The term "Young" loosely means those who have been diagnosed and treated before reaching natural menopause.  Those sisters have some unique issues such as dealing with loss of child bearing capability, body image and sexual function, issues related to being thrown into surgically induced menopause that they find helpful to share with each other.  If that is the case for you,, reach out to @jiselle16 and introduce yourself.  She is the hub of that group.  And watch for the announcement by OCC of its monthly Teal Tea for Young Survivors.  I generally post the dates and links to register to participate here on OVdialogue or you can find it in the OCC site under Events. The new schedule should be available soon. 
  • @Fearless - Vol Mod Thank you so much for all your comments. So very helpful. I go for a couple short walks daily, but I do get discouraged about those walks being shorter and slower. Yet, I should give myself more credit for actually making the effort to do what I can.
    Thank you too for the other info on the Young Survivors group. Nice to be called "young" :)
    I did hit menopause before my cancer, and actually it was post-menopausal bleeding quite a few years ago that started this long journey before actual diagnosis.
  • jiselle16
    jiselle16 Peer Support Vol
    @Hobnob Sorry to hear about your diagnosis, but glad you found our community! I'm hoping this site will provide you with the support and encouragement you are looking for. I too remember how tough those last couple of chemo sessions were - it's encouraging to work towards the finish line but the cumulative effects make each treatment more tough. One day at a time was my mantra (and still is!) five years post-treatment. As was mentioned, if you would like to be a part of the Teal Teas for "young survivors", just send me a message! Typically it is held the last Wednesday of the month at 6pm, but once the schedule is confirmed, the dates will be posted on here.

    We got you!  <3
  • Anna
    Hi my name is Anna and I was diagnosed with stage 3C high grade serous in Nov. 2021. I am 68.I have had a successful cytoreduction surgery which included an omentectomy, bowel resection and radical hysterectomy. I am in my second round of chemo with Paclitaxal and Carboplatin through an IP port. I am looking for support as I navigate this difficult journey.
  • hi there   I was diagnosed in November 2020. I started chemo three rounds of drugs for ovarian cancer and then had my surgery in Hamilton Ontario February 26 where they removed pretty well everything including the omentum and part of my bowel. I recuperated from that surgery and then had another three full rounds of chemo which ended in May 2021. I was quite thin from the weight loss of everything and had absolutely no appetite but ate because I had to and they were easy things resource V-8 juice and egg anything that I could just get down and still feel that I was doing reasonably OK. It did take a while to get my appetite back but I have got it back now and everything taste so much better, I haven’t had an appetite like this for many years and makes me wonder how long my cancer had been brewing inside me. I have more energy now and have did work in my garden in the summer in and now trying to get outside for walks my spirits are somewhat better they did have me on the anti-estrogen drug but it did put me into an immediate depression with anxiety which was intolerable so the oncologist did stop this and I was put on Trent Alex an anti-depressant and also given some clonazepam for the anxiety. This does help somewhat and I continue to try and move forward. I do have the support of very dear friends my husband is deceased now for 2 1/2 years of which has I think even been worse than going through the cancer but I just managed to keep moving forward keeping busy with my friends getting out doing things getting used to the new me with my gray spiky hair my CAT scans and bloodwork are all good so I am hopeful that I will not be part of the 30% reoccurrence. Just keep putting 1 foot forward because tomorrow always comes and it does get a little bit better as we go on. Reach out to your friends and you know who your good ones are for they will be there for you my thoughts are with you. Linda
  • Fearless_Moderator
    @Anna so glad you found us.  Supporting each other as we navigate through this disease is what our community is all about so welcome, although not happy to hear of your diagnosis.  For that, please accept a big hug from all of us.  

    You will find many stories and many Teal Sisters who's diagnosis mirror yours. That said our personal experiences differ given we all respond to treatment differently, our own tolerance for discomfort differ, our emotional make ups are different.  So there are never any cut and dried answers to questions or issues.  But reaching out to this community is so helping in preparing for the future, in building out questions for your cancer care team, and just having a sounding board that is objective and non-judgemental on those days you just need to lean on someone or vent some anger.  Truly, I'm sure you already have, but will go through the gamut of emotions.  

    If you haven't already, do visit the OCC website and use it as a reliable information source.  Steer clear of Google and the Facebook groups, many of which are full of information or suggestions that come from unreliable sources.  And do order the OCC booklet By Your Side. It's a very helpful guide from diagnosis through primary treatment and will answer many of the questions you might have.  Every Thursday we (OVdialogue) have a live online chat at 1pm ET.  Love you to joln us any time.  You need only sign in to OVdialogue and click on the topic Teal enter and participate in the weekly chat.  Those discussions are all archived so you can go in at any time and follow the past chats to get a sense of what we talk about...which can be everything and anything.  But it is a good way to immediate feedback to any questions or issues that at top of mind for you.  

    And going back to OCC itself, they run a monthly live group on the zoom platform. One for anyone, one for Young Survivors, and one for those Survivors of 10 years plus.  Those are generally the last Tuesday/Wednesday and Thursday of each month. For those you must register to get the link and participate.  I post the schedule and link as it comes available on the discussion topic TEAL TEAS.  And OCC runs other information sessions that you'll find very useful.  Again I post them on our home page as the information is available to me but includes a monthly speaker session and hopefully again an annual online symposium.  That information is also available on the OCC website under EVENTS.  

    Do reach out as questions come up, when you're looking to compare experiences, on those days you just need a shoulder to lean on or place to vent. We're here for you all the way. And  I can tell you that there has been so much in new developments in treatments and drugs just these past few years that no matter the stage of diagnosis there is hope for a long and happy future.  I too was diagnosed stage 3C high grade serous back in early 2017.  Unlike my luckier friends who remain NED (no evidence of disease) since primary treatment my cancer became chronically recurrent.  So recurrence number 1 was treated with a clinical trial for two years, recurrence 2 with another 6 cycles of the same regimen that was used for my primary treatment, and now recurrence 3 with a new protocol as I've become resistant to platinum based treatment.  Based on old statistics my prognosis was originally 3 years but here I am in my sixth year of treatment, still going strong and living well with this disease.  

    Keep us posted on your progress......wishing much success with the chemo.  I know ringing that bell at the end of your chemo is a great way of celebrating a key milestone in your recovery. So is letting us know and allowing us to celebrate with you.  And if you need any help navigating this site or that of OCC please reach out to me anytime.  


  • @jiselle16. Thank you. I’m trying to focus on one day at a time too. Yes please sign me up for the group. Thanks. 
  • jiselle16
    jiselle16 Peer Support Vol
    @Hobnob OCC has just released the dates for the January Teal Teas. January 18 is for anyone diagnosed with OC, January 19 is for young survivors, and January 20 is for survivors diagnosed 10+ years. You are welcome to sign up for any or all of these Teal Teas! You can find more info and the links to register:
  • @missvixx Your situation sounds so similar to mine. I know about the big incision and many staples! That feels like a long time ago. Thank you for sharing your story. I wish you (and all those who've shared), the best in their healing journey. Thanks for welcoming me.
  • @Hobnob @Anna we are all in this together.  Join our group and lean on us for support. I can tell you that the teas have such a huge value to my sanity and coping.  Knowing that I can chat with other ladies who really get what is happening and we can bounce ideas off each other is amazing.  I'm here for you anytime! 
  • Eileen
    Hi everyone my name is Eileen. I am so glad i found this site. I live in Kelowna BC. Have 4 grown p children. Have a little furry shih tzu and cat to keep me sane. My late husband died,  be 3 and half yrs ago due to lung cancer that spread to his liver before finding out.

    I was diagnosed with stage 3c ovarian cancer on Valentine's day, of all days to get the bad news Feb 14 2021.  The cancer had spread to my perirectum and omentum.
    Been feeling not quite well for awhile. Been having bloating etc. back and groin pain.  My dr thought it was groin pain from pulled muscle. Long story their but I am with a new dr now. Woke to feeling abdomanal pressure and noticed it hurt below just pressing. Hospital kept me few days to run tests to make sure it didnt spread elsewhere.

     But funny thing is, I was in hospital for groin pain in Dec 2020 and they did ct then and the radioologist said i had a 13mm cyst on my ovary back then. I asked the dr when I found out in Feb 2021 that I  had a 13mm cyst back then. Their answer was oh we didn't know what we were looking for. You can imagine what went through my mind then. 
    But I started chemo in March 2021, was scheduled for debulking surgery in beginning of July 2021 but with this covid and all precaution I was taking, I  came down with it and my surgery had to be delayed. Needless say I got my debulking surgery, full hysterectomy and removal of my omentum. Then had 3 sessions of chemo afterwards. I had a few delays in my chemo due to my blood levels, they had to lower my carboplatin on my 7th chemo by 10 percent but still ca125 levels went own by my 8th chemo which was Nov 2021 I had another delay when they did my ca125 levels at 4 weeks it was down to 26. But 1 week later which would now be 5 weeks after last chemo they retested and my ca125 went up to 40. Omg I spoke to my oncologist she still got me in to do my 8th session of last chemo but lowered the abraxan this time. So three weeks later just Dec 2021 I had my  contrast ct to only show that a few sm nodules redeveloped in my periotic gutter measuring 6mm or less. Long story short,  my oncologist has recommended that I start Zejula. She recommended a break from chemo as i asked if  should do more she said the goal is to stop them from growing anymore and keep them small.  I don't have the gene mutation at all but my oncologist said newer studies had actually proven good outcomes for people who doesn't possess this gene.

    I did research the world out of maintance therapy drugs and had all sorts of questions for my oncologist when I saw her. One of them was Zejula. Needless to say i am scared at all the side effects i have read. Not too much reviews from others on this drug. Biggest fear I have is I start it and it doesnt work. My oncologist recoomends i start taking vitamin d and calcium daily and she also said for me to start retaking my nausua meds 3 times day, half hr before each meal. When i start taking them.I was given  those  for my chemo. I actually hardly used them i did extremely well n chemo. Have to go do my updated blood work first though.

    Has anyone here been on Zejula or is currently taking Zejula who doesnt have the brca 1 and 2 mutation and are on would love your feedback. How about side effects for anyone using them and how your coping. Any feedback would greatly be appreciated. Thanks for letting me share my story.
  • Hello everyone! I was 55 when diagnosed with Stage 1A (full details in my story) It's been a weird and unique journey. My last chemo treatment of 6 rounds was April 28th 2021. Things are improving and would love to sleep a full night....but alas no! Still having some issues with fatigue and now getting some skin irritations but overall going good! Happy to be part of the group! :)
  • Fearless_Moderator
    HI @AnDee and welcome to OVdialogue and our community.  I just read your profile  and thanks for that.  Personally I find it helpful engaging with our members when I have more context about their own experience and not just responding to a generic question or concern. 

    But yes, you sure have had an interesting journey. While all of our stories do demonstrate how unique each of our situations are and have been, I have found that those who were diagnosed very early on often have some the most interesting symptoms that have led to diagnosis.  You were so lucky to have had it caught at such an early stage and wonderful news that you continue to be NED (no evidence of disease). It's unfortunate you hadn't found us at the outset. We could have been of some help managing through chemo and perhaps helping to set your expectations for recovery but we're here for you now and ready and able as you need us.

    As for recovery, I always advocate patience with side effects.  Some will disappear very quickly post chemo. Others take time. It's not at all unusual for some symptoms to persist past a year before they're gone entirely. But there are others that just seem to slide into chronic conditions that may need long term treatment or work to learn to live with them.  Keep your cancer care team informed with issues that are lasting.  They may have some solutions to recommend or feel it might be time to transition oversight and possible treatment of that specific issue back to your Family Care services or through them to a specialist in that area.  There does come a time in recovery that your interests are truly better served by those who may be more knowledgeable in treatment of particular conditions. After all, your oncologist is there for cancer itself...and post initial treatment really more focused on surveillance for possible recurrence...very much less likely with a stage 1 diagnosis of course.

    But thank you also for the update on your status. It is very encouraging to all of our community to hear the success stories.  Please continue to keep us posted and to engage in any discussions for which you may have information to share.  In the meantime wishing you continued success in your recovery.

  • Hi @Fearless - Vol Mod, I would have loved to find this site prior to chemo, after all I have read from the members it looks like there is a lot of basic information and similar side effects that would have been helpful. I have keep my oncologist and family doctor updated on everything...maybe too many details but that's how I am.
    I consider myself to be very lucky with the whole journey, early diagnosis, great doctors that helped me get everything I needed to get through this relatively quickly!! 
    Life goes on and I now have my sites set on the future filled with good health! :smile: