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 ([email protected]).
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  • Thanks for your encouraging comment. My husband is very supportive, the rest of the family doesn’t live close by, but our supportive. I’ve just listened to some of videos done by women with ovarian cancer on your site and they gave me a good feeling, so thank you for having them available.
  • Hello @bluesky - sorry you are dealing with this disease.... I hope you are coping well this evening and have found the answers and support you need. I found it encouraging to listen to the stories from the women posted on the main site, as well as viewing some of the recorded webinars.
  • Hi everyone.  My husband found this site and he's found it very interesting and hopeful.  I'm 59, BRCA1 mutation positive, and have completed my 7 rounds of chemo and surgery (which only removed ovaries and tubes, and the rest was "suboptimal debulking"). I went completely vegan while waiting for the initial diagnosis in June 2019 and I feel really well; my mother passed away from stage 4 ovarian cancer a year younger than I am currently.  It's been much more emotional a journey than I ever would have expected; my family (husband and two university-age daughters) have been amazing.  I'll find out more Monday about the "next stage" which may be a clinical trial, so I'll be poking around in here to learn much more.  Thank you to all the brave women and folks who make this site a reality.  :)
  • Welcome @apricotsinmypocket... sorry you are having to deal with this disease - glad you have a support system in place and it is good to hear you feel well. Agreed, the emotional impacts are difficult. We are here to support you as much as we can and wish you the best outcome possible for your upcoming appointment.
    Hoping you find support here under the various topics from women in similar situations.You can click on the search bar at the top for topics or on any of the user names to see their comments and stories. 
    If you are around at 7:00 PM CST, we try to "meet live" on Teal Tuesdays.

    You can also visit the main site to find events, encouragement, support and view pre-recorded webinars.

    And, If you have not received the support resource By Your Side - you can order here:
  • Good Evening! I was diagnosed with high serous ovarian cancer, stage 4, April 24, 2019. I had three rounds of chemo. Then had a complete hysterectomy and debulking. Following that, I had three more chemo treatments. Last chemo was Oct. 1. Since then I’ve struggled with chemo damage. I recently went on gabapetin 300 mg to help with nerve pain and it has helped.
    Three weeks ago, I started menstrual like symptoms - cramps, abdominal and back pain. Also experiencing a watery brown tinted discharge. Oncologist ordered a cat scan. Met with doctor yesterday. Scan shows no sign of clumps of cancer. I am relieved. Oncologist is concerned because the lymph nodes in my back are swollen. She hasn’t seen this before and is not sure what it means.
    Oncologist has ordered a cat scan in four weeks to see where things are at.
    in the meantime, I’ve gone on hydromorphone (narcotics) to control increasing pain in back and abdomen.
    Has anyone had a similar situation? I’d appreciate any suggestions or comments.  Thank you! 
    I read By Your Side as soon as I was diagnosed and have ordered Still By My Side, which I am looking forward to reading. I have gotten value from listening to the clips of different women sharing their stories and experiences. It has been encouraging and comforting. 
  • Hello @BisonBaby - hope today's message finds you comfortable and feeling ok. Sorry to hear you are dealing with these recent issues. It sounds like the medical team is looking after your concerns - hope that is comforting to you.
    Yes, the videos and guides are  so encouraging to us all!
  • Thanks @Flowergirl! The oncologist increased the dosage of hydromorphone yesterday. This has decreased my pain level and increased my comfort level. I’m still getting my head around the medical approach of no immediate action when signs of cancer return. My oncologist explained this at the end of my six chemo treatments. I had assumed blood tests would be done at each follow up appointment. I was told studies indicate that giving treatment when you do not have symptoms does not improve survival.
  • Hello @BisonBaby - glad to hear the pain is more controlled for you now.
    Yes, it is really hard to wrap your mind around the watch and wait approach, especially when you have had so much contact and direction from the medical team as you go thru treatment. I found watching the recorded webinars a few times really helped me with that understanding and the process.
    Scroll down to view the previous recorded ones:
    You can view here:
    Living with recurrence, fear of recurrence, treatment for recurrence
  • Hello and welcome to new chat participants. You are welcome to  copy your story here and /or on your bio page.
    As you can see, we have over 15 pages of stories and experiences here. We invite you to take a read through the previous posts to learn more about the remarkable and resilient women here on this forum. Wishing you all much support and encouragement. 
  • Hello @Katieand a warm welcome to any new chat participants.... You are welcome to  copy your story here and /or on your bio page. 
  • MizStavy
    edited June 2020

    In March 2019, I was diagnosed with Stage IV+ ovarian cancer; in April, I began the 3chemo-hysterectomy-3chemo protocol; in August, I had my last chemo infusion; in November 2019, I started Lynparza.

    I am BRCA2 positive, with a specific genetic mutation called the "Icelandic Founder" mutation, inherited from my father, who also had breast cancer. 

    I am very glad I found this board--just through a random Google search for Lynparza side effects.

    Disclaimers: (1) My photo is pretreatment, with my natural hair, and (2) I am American with Canadian ties--my immigrant grandparents, from both Iceland and Finland, came to Canada as port of entry, not Ellis Island, and my oldest uncles were born in BC.]
  • Jackie
    Jackie Peer Support Vol
    Hello @MizStavy and welcome. I'm glad you've found this group. I'm actually Canadian with an American connection because although I was born and raised in Canada, I had grandparents who were born in the United States. My ovarian cancer has not been linked to a BRCA genetic mutation, however I know that a woman with a mutation in her BRCA1 gene has about a 20-60% risk of developing ovarian cancer. Someone with a BRCA2 mutation has about a 10-20% risk of developing the disease. 
  • CountryLiving
    CountryLiving Peer Support Vol
    Hello @MizStavy welcome to the club. I hope you find it helpful I know I have...lovely ladies and support.
  • CountryLiving
    CountryLiving Peer Support Vol
    Hello @MizStavy welcome to the club. I hope you find it helpful I know I have...lovely ladies and support.
  • @MizStavy welcome to OVDialogue! You've found the right place for online support from others who know what you are experiencing. Glad to have you as a part of the group. Don't be afraid to ask questions! We don't have all the answers, but it's amazing how many can be answered by the Teal Sisters you'll meet here.
  • Hello @MizStavy, Welcome to OVdialogue!  I'm glad you found us too!  It sounds like your treatment is going well and I sincerely hope that is, indeed, the case.  How are you finding Lynparza? 

    Interestingly, my maternal Grandma came to Canada from Finland and her husband, my Grandpa (who came to Canada in his early 20's from Scotland) also had breast cancer.  In fact, he was the first male breast cancer patient to have his case published in the medical journals here.  That connection of a male relative with breast cancer, as you know, is a risk factor for the BRCA gene mutation.  But my blood test was not BRCA positive (although my tumor tissue was).  So I'm not on Lynparza at this time (am currently in remission after diagnosis in 2018 and treatments through to 2019 for stage 3b Ovarian CA; no recurrence thus far.)   

    I have relatives in the USA as some of my Grandma's family eventually settled in the Dakotas and California....but essentially, in the end, I think we are all one great big human family in any case. Stay in touch and let us know how you are doing!  All the best, maggiemae.
  • Hi there, I'm writing to introduce my mother who was diagnosed with Serous low grade stage 3C in December 2006 at Sunnybrook in Toronto. She had surgery and chemo (carbo/pac). She had her first recurrance in 2012 and had a resection and more chemo. Over the years she's had radiation, drug therapy, etc. Now we're at a point where it's progressed and giving her troubles. We're at a standstill. It's been in her lung and airway so she's recently had a bronchoscopy to remove the tumour in her breathing airway. She just finished radiation. They say that the cancer has not changed since the last scan but she's extremely weak and no energy (before the surgery had started) and no appetite. They say there's nothing they can do for her because they can't see anything physically wrong in the scan. Everthing has remained stable. But she's getting worse with lack of energy and weakness. We don't know where to turn for help! Her oncologist said she can't do anything to help her. I'm wondering if anyone would have any suggestions of any sort of doctor who may be able to do further investiagtion or testing. There's definitely something wrong. This isn't her and it all came on so quickly. She was able to go for a 5k walk just a month ago. Now when she wakes up she feels so devoid of energy and weak and like her legs are weak. It's so frustrating not to know what's going on with her and have all the 'experts' tell me there's nothing they can do. I can't believe it's cancer mets because it seemed to have come on so quickly and ask the docs say - things are stable. Any suggestions or thoughts would be so welcome. Thank you.
  • Hello @MizStavy - welcome to the chat site. How are you managing with the Lynparza?
  • Hi @Flowergirl

    I think I am just starting to experience side effects, after being on it about eight months. It's hard to tell because they've come on so gradually and intermittently. But I must have reached some threshold because the symptoms aren't going away.

    The worst are a constant low-grade nausea and feeling really woozy all the time. My oncologist prescribed prochlorperazine (comprazine). I took the first doses yesterday and they seemed to help at least a little. Thanks for asking!
  • Hello @E11e - welcome to this chat forum. Thank you for sharing your mom's story and sorry to hear you are dealing with uncertainty of her current situation. Not certain from the above information you have shared if your mom is still in the hospital or treatment... are you able to discuss with the medical team your concerns as above for an explanation; Also could the recent condition be due to the side effects of the radiation and / or the disease ? Press for answers from the medical team if you feel something is wrong for your mom until you have an understanding that satisfies you both.  I hope you are able to get some answers to help support you all and find some peace/comfort. 
  • @E11e Hi, I'm sorry to hear this about your mom.  It saddens me how they can just say they cannot help.  Someone should be digging further.   If it were me, I might take her to the emergency department on an early morning, if she's at home especially when she's feeling so weak and unwell.  Perhaps there they would do further tests on the spot and dig a bit further.  I know it isn't a great place to go, not fun waiting there but maybe better than just staying at home, although not sure if you would be able to accompany her during these Covid limitations.

    Wondering too if it's radiation side effects?  Or have they ruled out pinched nerves, spinal issues, etc. in regards to the weak legs?

    Those are just a few ideas that come to mind but I am not a medical professional, just my thoughts.

    Wishing your mom improvement and health.  Best of luck!
  • Welcome @E11e.  I'm sorry to hear that your mom is not doing well.  Like @Luci22 and @flowergirl has said maybe push the medical team.  If you think she is getting even more weaker take her to an emergency dept...maybe it could be from the procedure/ radiation..maybe if she not eating or drinking its causing her to get weaker.  But maybe the ER can see what's going on...I hope you get the answers and support you need.  
  • Welcome @E11e I'm glad you found this forum and so sorry to hear about your mother's challenges.  She's sure had a rough time but she sounds like a fighter.  Have you given any thought to her lethargy and weakness being emotional and not physical?  I too went through a patch where I could barely get out of bed in the mornings and found walking, even much shorter distances than normal, a huge challenge.  When we couldn't find any medical issue associated with the cancer or treatment I, who had been reluctant in past, reached out to our local social work group and scheduled an appointment with one of their team.  Wow, what a difference when I had found someone I could talk to in a safe place, who wasn't judgmental, who didn't try to solve every problem but was there just listen and help me draw out my feelings.  She's really been an inspiration and, even though I feel guilty taking up her time now that that's all behind me, really look forward to our monthly chats.  Just a thought you might want to explore.  Regardless, I wish her all the best and hope you're also getting whatever support you might need. She's lucky to have you in her corner and I'm sure she is well aware and appreciates you enormously.
  • Hi @MizStavy
    I too experienced very similar side effects after I'd been on Olaparib/Lynparsa for awhile. As you say, intermittent at first and then more regular.  They'd ask about nausea and I would's not really nausea, more a queasy feeling that comes and goes through the day.  And when I'd stand in one spot for a few minutes I'd suddenly get a short-term vertigo or lightheadedness.  Neither would last more than a few seconds. We tried Metonia for the nausea but it actually messed up my bowel so I stopped it and just decided to grin and bear it. I did find nibbling bits of things like crackers or nuts or a piece of cheese or fruit periodically through the day seemed to help.  Interestingly though I am now on month 18 of the drug and the wooshiness has disappeared totally. The queasiness still comes and goes, but very seldom and much less intense in feeling now; certainly not remarkable enough to even think about anymore. 

    That's been my own experience. I do hope for you it also dissipates over time.  
  • Hi @Elle, Welcome to OVdialoge,  I'm so sorry to hear of your mother's challenges.  It must be incredibly frightening to hear from your medical team that there's nothing more they can do for her.  Are you comfortable asking them if they know of anything anyone can do?  They may have some suggestions, even if they feel they've done all they themselves can.  I note above that others have mentioned taking her to the ER as well as the possibility of her weakness being a result of emotional, versus physical, distress.  Both seem reasonable avenues of pursuit. Certainly, ruling out other medical or neurological causes for her symptoms is paramount.  And I can vouch from experience for the positive difference it can make in ones life to have a great relationship with a good Social Worker or Psychologist  when facing something like what you and your mother are going through.

    If you take her to the ER, you may wish to ensure you have a few virus-blocking masks with you and a supply of kleenex.  With the low energy levels and weakness you describe, getting up and moving around, even a little, may elevate your Mom's heart-rate.  For many people when this occurs, their nose can run, and the mask can be rendered ineffective if it gets wet.  

    I'm not sure if your Mom is at home or in hospital at present.  But If she's at home the good news is, because of Covid, much counselling/support work is being done on-line just now and, as such, even if your Mom is feeling too weak to get out of bed, she can still access emotional help and empathic support.  Perhaps you could call your local Cancer Center and see if virtual sessions can be made available to her.  If not, most cities have several private and/or EFA-affiliated social workers and psychologists who can offer such services.  I wish you every success in finding help for your Mom and in supporting her return to health and energy.  Sincerely, M
  • I am 61 years of age.  In January 2019 I was diagnosed with Stage 1 triple negative, grade 3 invasive ductal carcinoma. This was caught at my screening mammogram. I had a lumpectomy and sentinel node dissection. Thankfully there was no node involvement. I was referred to the oncologist for chemotherapy but this was offered more as an insurance policy rather than being required for treatment. After careful review I declined Chemo. I proceeded with 16 rounds of radiation. My oncologist ordered a baseline CT scan just to have it on file. A mass was found on my ovary and I was referred to the gyne-oncologist and was seen within 5 days. My genetics testing was fast tracked and was seen within 3 days. The gyne-oncologist decided I should finish my radiation and I was booked for surgery the week after it was completed. I had a total hysterectomy and omentectomy. It indeed turned out to be Stage 1c serous ovarian cancer, another primary. I am also BRCA1 positive. So after having declined chemo, I ended up having to do chemo anyway. The good news was that the chemo I had was good for both breast and ovarian cancer. I completed chemo at the end of October. In December, I was placed on the PARP inhibitor Lynparza which has been used primarily for ovarian cancer but will also benefit the breast cancer. I am strangely grateful for the breast cancer as it likely saved my life. After I have completed my two years on Lynparza I will be having the conversation about a bilateral mastectomy. But for now after all I endured in 2019 I am happy to wait it out.

  • Welcome @jnrichmond.  Thanks for sharing with us.  I'm glad your treatment has gone well.  It is strange to be thankful for something so life changing.  It sounds like you have endure alot but have the strength and positivity.
  • CountryLiving
    CountryLiving Peer Support Vol
    Hello @MizStavy welcome to the club. I hope you find it helpful I know I have...lovely ladies and support.
  • Welcome @jnrichmond - I was also diagnosed with Stage 1C - mine however, is Clear Cell Carcinoma. I had six rounds of chemo and finished my treatment in July 2016. Glad to have you in the group. We have an amazing group of women to share and support!
  • Leave it to me to need high risk surgery and get a cancer diagnosis during a pandemic.  What a whirlwind the past 4 month have been.  I have completed one chemo treatment so far.  Stage 1 High Grade Serous ovarian cancer.  Treatment will be complicated by Polycystic Kidney Disease.  Kidney function is around 25%,