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).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.

Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!

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Comments

  • Signing off ladies.  Hope you all have a great week!  
  • @BeamBlossom you're always welcome to keep the conversation going on this thread.  Hope your doctors' call was "uplifting" 
  • Have a good week. Stay as positive as you can!  <3
  • I"m signing off as well. Thanks all for being here today and sharing with all of us. Hope to see you all again next week.
  • Thanks to all. You lifted my spirits! I will wait to hear from you @BeamBlossom. Signing off for now.
  • CountryLiving
    CountryLiving Community Champion
    Good bye till next week.

  • @BeamBlossom and @cbot - I too would be interested in any dietary suggestions/resources related to WBC.  Thanks.
  • It's Thursday already!  Welcome everyone.  A reminder, this chat is about you...to share information, ask questions, or just tell us how you're doing...or just follow the chat. Participation is at your discretion, although we do encourage you to engage.  You and your feelings and experiences are important to all of us in this community.   

    Perhaps to kick things off I can share a story that might resonate with some of you.

    Last week I left the house to go into Kingston for a blood draw and then pit stop at my druggist in Napanee on my way back to the farm to pick up a prescription that was ready.  The blood draw was, as usual, a quick in and out and off I went to Napanee. However, as I approached town I realized I couldn't remember why I was there.  It took 10 minutes driving around until the sight of the drugstore triggered my memory. Brain fog...old age....just unfocused...all of the above?  It's been three years since I was in chemo...what do you think?  Resonate with any of you?
  • Hi @Fearless . I'm writing this from the chemo suite. Currently receiving chemo treatment #4!
    I can relate to your story...to be honest I experienced things like this even before my diagnosis.  I wonder if the episodes that we attribute to chemo brain may actually be related to our busy lives. For me it's not so much that I forget something - I just fail to register it in the first place!
  • Hi @cbot. And hi too to @CountryLiving who I see has joined us.  I think you may be right cbot. Just so much stuff rolling around in my brain these days some thing always gets lost in that big mess of gray matter LOL  How is the chemo going for you cbot?

  • Looks like it may just be the three of us today.  I know Angel27 my co-host wanted to be here but is bit under the weather today.  Not sure where everyone else is but it's another spectacular day out here near Kingston.  My husband just harvested our carrots and it seems I have enough to feed the entire city!  Anyone have any fascinating recipes to share?
  • Thanks for asking @Fearless. The chemo process itself has been ok, but this is the second time that it had to be delayed a week due to low neutrophils. So...I will be starting on Grastofil injections tomorrow. According to Google, " Grastofil (filgrastim) is approved by Health Canada as a subsequent entry biologic (SEB) to Neupogen" 
  • Hey @Tinazzie Glad to see you join us too.  @cbot, hang in gal.  Like we've said before, almost everyone has experienced some pauses in chemo for just that reason. Cycles are actually set up to account for those pauses so they don't jeopardize the effectiveness of your infusions.
  • @cbot, just googled your grastofil and seems it's a new drug developed after neupogen.  Hopefully less side effects although those with neupogen seem to be managed well with antihistamines.  I'd be interested to hear how your experience with grastofil goes.
  • Hi @Tinazzie and @CountryLiving! Thanks for the moral support @Fearless. I know claritin is an option for bone pain side effects from Neupogen/Grastofil.  Has anyone tried it, and, if so did you take it preventatively or wait until side effects showed up?
  • @cbot....glad to know that round #4 is underway!  And good for you for being with us - I am usually half asleep with the pre-meds (Benadryl in particular)! 

    @Fearless - the forgetfulness sounds familiar!  I walk into a room sometimes and can't remember why I did.  I have to retrace my steps and then it might come back.  But like @cbot mentioned, I think some of this was happening to me even before the chemo. Too much happening perhaps and sometimes too much to process. 
  • Thanks @Tinazzie! They stopped giving me the Benadryl in round 3, so I'm not so groggy. :)  They also ran the Taxol through more quickly today.
  • @cbot unfortunately no one mentioned any possible side effects to me when I had take a week's worth of neupogen shots so the bone pain hit me like a ton of bricks.  Fortunately my husband made me knock back a couple of extra strength tylenol that did the trick until I could reach my medical team to find out what was happening. From there on took Claritin before I went in for each shot and then followed the repeat directions until the next day's and I was fine. No further issues.  Not sure about your new drug so suggest you check with you doctor or even the chemo nurses and they'll tell you what's best to do.
  • @Tinazzie You're right. Some of this vacuum I walk around in some days was happening even before the cancer.  My favorite was always dragging myself upstairs for something, forgetting what it was I was up there to get, going back down and as soon as I hit the first floor remembering and having to go back up again.  Wish I had a fitbit for those times !
  • Hello!  This is my first time joining this online chat.  Interesting way to connect with others who are on same journey. 
  • Enjoy the carrot harvest, @fearless!  Have you tried carrot soup?  I quite like some of them.  If you're into Thai food, here's a Thai Carrot recipe: https://minimalistbaker.com/creamy-thai-carrot-soup-with-basil/ 
  • Thanks @Fearless. I will receive my first shot tomorrow at the cancer clinic and then a home care nurse will come the following day to teach me to self inject for a total of 10 days. The cancer clinic nurses have given me mixed info. Some suggest waiting to see if I have any side effects. I have a supply of claritin and Tylenol at home so I should be good! :)
  • Welcome @Readersmaven Glad to have you with us. Unfortunately the platform makes our chatting a bit awkward at times what with delays and the need to constantly refresh to see the updated comments but we're working on making it more efficient and we've managed ok so far.  How are you today?
  • Welcome @Readersmaven, and thanks for the recipe, @Tinazzie!
  • @Tinazzie Thanks for that recipe. It looks great. Will add that to my list along with carrot cake, carrot muffins, frozen carrots.  Wouldn't you know though our best harvest would be the one veg I like the least LOL.
  • I can see the challenges with online chat...LOL! I'm ok... it's a glorious day so must enjoy the great weather, will be cold soon enough. 

    I am currently NED, and taking lynparza. Been on this for almost 3months and so far so good. Few side effects, so I'm grateful for that. 

    On the other hand I feel in a bit of a holding pattern as covid keeps us all fairly restricted.  I'm sure I'm not only one feeling confined and finding this new normal a challenge. 
  • @Readersmaven can I ask where you are in your journey and how it's going for you?  Anything you might like to share with our group today? 
  • My last round of chemo is next week and I'm feeling quite anxious.  My neutrophils have been getting lower each cycle and I hope there's no issue or delay this time.  Also anxious about what's next - hopeful, but also scared and confused.  I've been so preoccupied over the last 8 months with the (dual) diagnosis, surgeries, appointments and chemo - all focused on me, that it will be quite different to have the time to be able think about and do things, hopefully, for other people.    
  • Sorry @Readersmaven we crossed wires !  We do that alot.  Congratulations on your NED status.  I too am on olaparib/lynparza but on a clinical trial for recurrence.  It's been almost two years now and so far so good. Side effects have been minimal for me although I may move to a lower a dose as I'm finding the fatigue and blah feeling draining me more these days.