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  • 1.  Symptoms

    Posted 3 days ago

    Hi everyone, 

    I have been living with my low grade OC since my recurrence in 2019, was told Jan. 2023 that I have reached all treatments available with no results. I am currently in a study in my province of BC , and I am also experiencing new symptoms: I have a pleural effusion that was drained on April 17th, but is now happening again. I developed a pulmonary embolism,  so I am on an anti-coagulant, and my left leg swells up everyday,  they checked for a blood clot but didn't find any. 

    Has anyone out there having similar symptoms? I am wondering if my prognosis is poor, I am talking to my GP in 2 days about palliative care, feeling isolated...



  • 2.  RE: Symptoms

    Posted yesterday
    Hi Sylvie,
    I heard your story on Teal Tea a couple of weeks ago and have been thinking about you. This is my first time posting to OVdialogue, so I hope I’m doing it correctly and that my response will show up.

    I’m sorry I can’t say that I’ve had any of the symptoms you’re dealing with, but I just started chemotherapy treatments for my 2nd recurrence and recognize how difficult it all can be. I was taking Zejula, a naraparib since July 2022 without too many side effects and thought I was doing well. My CT scan said something different! So disappointing.

    Palliative care doesn’t sound good, but your GP may explain that it means, not a cure, but control of the symptoms.

    Keep updating. It’s always good to find someone who’s going through the same things, isn’t it? Maybe someone will connect here soon.


    Original Message


  • 3.  RE: Symptoms

    Posted 22 hours ago

    Hello Sylvie,

      I have been thinking about you a lot since I read your post the other day. I am so sorry that you have these symptoms; it must be a huge worry for you. I don't have these symptoms but I imagine there are others here who can relate. I send you a very warm hug and hope that you get some clarity from your doctor and get the support you need. 

    Leslie 


    Original Message


  • 4.  RE: Symptoms

    Posted 22 hours ago

    Thank you ladies! 

    Your support is dearly appreciated ❤️

    I had a zoom meeting with my oncologist yesterday,  and I came out of it with a more positive attitude in a sense. My left lung is a bit fuller than 2 weeks ago, but not much different,  so no pleural drainage as of yet, we will monitor.  My right leg is still swelling up, still don't know why. It looks like a lymphatic drainage problem, so I will try a full leg compression stocking,  and she is sending me for tests (date to be determined). 

    I will stay of the POG study drug for now, looks like it is "doing something " since my CA 125 has dropped from the 1700 to the 1500 in 1 month. I am tolerating the lower dose. 

    I have apply for the palliative program, to have access to more support. I am on a live longer and better journey now, not a cure journey.  I am coming to term with this slowly,  although I am still fighting the battle, a glimmer of hope still exists.  

    The sun is shining, big hugs to you all 🥰


    Original Message


  • 5.  RE: Symptoms

    Posted 20 hours ago

    Some good news.  A little bit of what you wanted.  Glad to hear about it.


    Original Message


  • 6.  RE: Symptoms

    Posted an hour ago

    @Sylviequebecbc   Thank you for your post. Your original one in which you were attempting a trial sounded very promising and I was looking forward to following you. As you know, our diagnosis are similar and have had similar journeys.  I do not possess the marker you do in order to go into that trial you are on currently which is disappointing for me but I am happy for you.  

    As for your new symptoms that have cropped up, I would talk to your team about them. Either call in and ask or book/wait for your next appt and ask the questions you need answers to.  I am not having similar symptoms. Mine are mainly continually dealing with partial bowel blockages and eating. As for if your prognosis is poor, only your Oncologist can answer that. I take things day by day and how I am feeling.  My prognosis is poor and was given 3 months to live late last year. So every day I am here and can do things on my own is a blessing for me. I try not to dwell on what they say and go by how I feel.  I have given over to projects I can't do on my own anymore like gardening and accepted it and have found inside activities to do instead like knitting.  I still clean the house but try to split it up so its not so taxing on me either. I don't nap during the day and watch my eating daily. I keep in contact with my Palliative Doctor when I am not feeling well and when I do feel well. We have a pretty good relationship that way. She is quick to respond when I need her to. I take an extra Dex (steroid) half way through the day on bad days and take Halidol those days too orally. Rest and relaxation help on those days too. I basically listen to my body and try to navigate through the symptoms that way.  So in answer to your question, communication goes a long way.  I would get in touch with someone and ask what you want to ask.  If you want to know your prognosis, ask. I did. I didn't like the answer but have come to accept it as is now. Perhaps sparking a good relationship with a Palliative Doctor will help you too. It may give you more piece of mind and/or options that will help with your current symptoms. I wish you well in whatever decisions you make and will look forward to your updated posts. 

    Take care of you. 


    Original Message


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