Newcommer

edited November 21 in Introductions
Hi there, 
Earlier this year I was diagnosed with stage 4 carcinoma ovarian cancer, a type B aorta dissection and a blood clot in my lung.  
I don’t even know where to begin as I’m just learning about this website and how to navigate it.
Hope to have further conversations in the near future

Comments

  • Hi again @grandma.  Now that we seem to fixed the problem welcome to our community.   I'm just sorry that what bring us together this disease we all share.  As a newcomer feel free to reach out if I can assist your  orientation to the site itself.  A few other recommendations as someone recently diagnosed, 

    Ovarian Cancer Canada has published a booklet called By Your Side.  It's a very helpful tool to guide you through your journey from diagnosis to completion of first-line treatment.  The booklet is free and you can order it in either hard copy or soft copy.  Most of us have both.  Just click on this link to order: https://ovariancanada.org/living-with-ovarian-cancer/newly-diagnosed/by-your-side

    The Ovarian Cancer Canada website is also very useful for support and encouragement through out your journey.  There you can find many stories of our members, events upcoming, information in video form and updates on new treatments and trials.

    The OVdialogue site is available to you 24/7 with roughly 900 members, all OVC survivors like yourself, from across the country. We value the opportunity to exchange information, share suggestions and most of all vent, scream, rant and rage within a safe non-judgemental community,  Of course it's even more fun sharing successes, even the wee ones as we fight this disease.

    Every Thursday at 1pm ET we hold a live online chat. That means several of us...sometimes as many as a dozen or more...get together to share information and stories in a real-time environment.  Just go to OVdialogue, sign in and click on the topic TEAL THURSDAY .  Love to have you join us.

    @grandma, a diagnosis of Ovarian Cancer is always received with some level of fear and trepidation. Especially for those diagnosed at advanced stages like you and me.  But over the past few years there have been many new treatments, many new trials, and members have become far more aware of their bodies that allows for an easier journey.  I too am late stage, as are the majority of us here.  When diagnosed in 2017 I was given a prognosis of 3 years, give or take.  Well, I've taken.  While my cancer can not be cured, I am now in my 6th year of treatment and have learned how to live well even with this disease.

    I wish you success with your treatment and look forward to hearing updates from you on your progress.  And please use us for what help you need anytime. Just a reminder that you aren't alone.
     <3 

  • StrongwomanStrongwoman Peer Support Vol
    @Grandma
      Welcome to the site and glad to see you have overcome the issue were having in getting started here.
      As you have stated "I don't even know where to begin..." Is there something specific you are looking to find out more about, connect with others or have specific questions?  Feel free to expand when you are ready, it is a safe space to do so.
      Diagnosis, surgeries and treatments are all difficult and takes a toll on our bodies. I am happy you found the site but sorry to hear of your diagnosis. As high grade is more common, is that the type you have?
      To find something specific on this site, go up to the "Search" bar, type in what you are looking for and then click the magnifying glass.  It should bring up past conversations that you can look at.
     To respond to someone specific, type "@" then their name they go by and it will be sent to them specifically. 
      Looking forward to your posts.
  • Yes I’m positive for adenovarcinoma with micropapillary  morphology, favour high-grade serous carcinoma.  I have been told that no tumours are in any major organ but surgery is not an option because one is wrapped around a vein leading from my liver.  
    I have completed 8 rounds of Chemo at the end of August and now waiting to start Zejula.  Which probably won’t start until the end of December
    Due to my unusual condition which includes an type B aorta dissection and a blood clot in my lung I am fortunate to have a great team of doctors that are doing a balancing act while treating this cancer.
    I will be on your site more often so I can learn more about this disease, treatments and support  
  • StrongwomanStrongwoman Peer Support Vol
    @grandma
      Thank you for your update.  You have been through a lot.  How has your recovery been with both the aorta dissection and blood clot?  
      How did you manage with the chemo?
      How are you feeling overall now?
      Many ladies on this site have used Zejula before and I am sure if you type it in the Search bar, you will see several threads with it in it.  Have a look and see if it helps you any.
      Are you able to join the chat today at 1pm?  If so, one tip, you have to hit the "refresh" button at the top in order to see any new threads/comments that are added.  
  • When I go for a CT scan there is no mention of my blood clot, only on my other issues so I’m not sure if it’s still there but I am in the process of switching my eliquis medication to warfarin.  I can’t take the Zejula until that has stabilized.  As for the dissection, that will never fully heal, it may scar up...to what extent, I’m not sure.
    I handled the chemo treatment extremely well. I was under so much stress prior to first session that I slept through the entire process.  As funny as it seems now, especially having my medical Issues and chemo run through your veins.  I felt like I was going to be okay now. 
    On our drive back my daughter asked how I felt.  My response was “I feel great, in fact I feel I can run beside the vehicle”
    This is also prior to knowing that the tumours will not be removed.
    I did feel myself become a bit derailed over the past several weeks with not knowing if or how Zejula will be paid for and the switching of medication but have picked myself up and will continue on.  
    I have registered for the December 7th session and will try to make today’s chat. I will definitely use the search engine to see the response of others taking Zejula.
    Thank you for the information 
  • Hi @grandma, sorry you missed Teal Thursday this week.  Next time hopefully.  Glad to hear how uneventful your first chemo was. For most of us, we almost create our own issues with worrying about what to expect, only to find it's not as bad as the movies show.  As for how you felt after, that's probably the Dexamethazone.  I used to come home and do laundry, vacuum, binge Netflix all night and raid the fridge.  But you're lucky you had your daughter there to support you. I used to find it quite the blessing when my husband was able to keep me company. Then Covid struck and it took some getting used to not having him at my side.  Now my treatments are so short he barely has time to circle the hospital and find a parking spot before I text him I'm done and waiting at the front entrance! 

    Good luck with the rest of your treatments.  Do rely on your oncology team for your questions and advice.  They're the experts and committed to making this journey as effective and as easy as is possible.

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