Teal Tuesdays - Live Online Chat!

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  • Perhaps, and I always blame the weather. Summer is short and the evening seem to be the best part of the day.
    Here the wind has finally stopped so it is enjoyable outside. 
    Hope to connect with you all on Thursday or I'll be "viewing in".
    It is nice to see all the new participants finding this support... there is a lot to catch up on throughout the site... hope you are doing well and enjoy the rest of the evening!
  • Will connect on Thursday, @Flowergirl!
  • Hello @luvlife and @Scarstef..
  • hello @love2run

  • Hello,  
  • I've been reviewing some of the older posts/ discussions and categories tonight.

    Tuesday's Tip... if you are searching for information on a specific topic, use the Search Bar at the top right 
    You can also click on the Categories and review past posts.

    Hope you are having a good evening and if you are available to join on Thursdays, the first daytime session will be happening.

    As always, the site is open 24/7...  :)

  • Gearing up for my last (sixth) chemo treatment next Tuesday in this second round of treatment. Seem to be responding to the treatment. CA 125 had come down to 1300 from 17,000; hoping for further decline; masses have decreased in size. Plan is to start maintenance treatment this fall--Linparza? Is anyone out there familiar with it and what I can expect? Just hoping to gain a little more quality time. The cancer had already moved to my liver by the time I was diagnosed so not a matter of getting rid of it; just focused on buying as much quality time as I can. Was diagnosed in September 2018. Had a good year after treatment and maintenance but the cancer reasserted itself so back in treatment this March. Have had some poor days after treatment but each one seems to be a little different (carboplatin and calyx.) Just hoping for some normalcy again. Have missed being able to do my own errands (never thought I'd be wishing to grocery shop!) Trying to stay safe and avoid Covid contact. Trying times for all of us. Would appreciate any feedback others might have on Linparza and what to expect. It's also been determined I carry the BRCA-1 genetic mutation so waiting to hear from the genetic counsellor what that means for me and my family (children and sister.) Scary times.
  • FearlessFearless ✭✭
    Hi @Shortone
    I'm happy to see you reaching out here.  You'll find many of us in or having experienced similar circumstances as you. It's great to hear you're responding well to treatment and the end of the cycle is within reach now.   Like you, I have had to learn to live with this disease.  My recurrence is not curable but, given so many advances in treatment the past few years, it is manageable.  Lots of things have changed in my "normal" but I'm actually finding my new normal far more rewarding and exciting.  

    As for the Lynparza/Olaparib, I have been on a clinical trial for almost two years now.  The drug has been approved for maintenance post treatment where patients are platinum sensitive and BRCA positive.  My situation a bit different.  My trial was intended to assess the impact of the drug on a recurrence and in a patient who is not BRCA positive, but does have an HRD gene mutation..which I have.  I can tell you what I joy it is to take my two pills twice a day.  Everyone, like any treatment, responds differently so I can only share my own experience, which has been very positive on the drug. It happened to shrink my recurrence by 75% in the first 5 months and then has stabilized me for a little over a year more. RIght now we're noticing it's efficacy lessening so I'll probably be off the drug by the end of the year.  But it has kept me out of more aggressive treatment now for almost two years and extended the quality of my life more than I would have expected.  As for side effects, I didn't have much in the way of the expected effects.  A wee bit of queasiness from time to time and some fatigue; both very tolerable in the grand scheme.  The only rough effect was severe muscle spasms and joint pain at first. But that was quickly and effectively addressed by a small lowering of my daily doseage.  

    If you want more information on the drug, just type in Lynparza or Olaparib into the search button at the top and it should give you other discussions on the topic to review.

    Good luck with the last of your chemo.  If Lynparza is the maintenance drug they suggest, I hope your experience is as favorable as mine. That said, there are a few even newer drugs out there, mostly in trials that might be explored by your medical team.  So much progress to help us all live longer and better lives with this disease.

    Please let us know how you're doing and if there is any thing more we can do to support you.  

  • Hi @Flowergirl and @Fearless - thanks so much for your messages about the new Teal Thursdays at an earlier time. I do appreciate the consideration!!   I had my 5th chemo session yesterday, and I hope I will up to participating.... but will certainly try!  Has the new time been  decided?  It could be that my chemo-fog missed it!   
    :#
  • @Fearless, we don't have a drug plan but most of my meds have been covered under the Ontario Drug Benefit Plan because I have been in a palliative care group since diagnosis. Hoping the Lynparza is covered as well but fearful that it won't be. The oncologist suggested I would be covered but not sure how we'll manage the expense if it's not. Would have to investigate Trillium funding.
  • Hi @Shortone, I just read your post above and I hope you find that your medical team will put you on Lynparza (or something comparable that works for you) and that the cost will be covered for you. I was diagnosed in July 2018 and my cancer too had already spread by then (into the peritoneum and onto the walls of several organs).  All my very best to you.  Please let us know how you make out.  

  • Good evening everyone! -How did we get to August already? I hope you are all doing well and enjoying the weather (it is lovely here on the Prairies!).
    I'll be popping in and off the site tonight - involved in some outdoor tasks and, if you are into the sports,  hockey is back!
    Reminder that "chat together" also happens now on Thursday afternoons!
  • Good evening! Yes hockey is back and we are watching it!
  • @Flowergirl quiet evening for  Teal Tuesday.  
  • for certain - a "hello out there " to a few people in view only mode as well.
    I'm back to my outdoor tasks until the sun goes down - and then more hockey tonight!

  • Hello everyone...I seemed to have missed Tuesdays conversations again...not because of hockey though..I hope everyone had a great long weekend..maybe I'll be able to catch up on thursday chat this week..
  • @maggiemae are you on any kind of maintenance treatment now?
  • Hi @Shortone, no I'm not.  My tumors tested positive for BRCA but my blood did not.  So, while my oncologists recommended and prescribed olaparib (lynparza), I could not get coverage for it as I'm considered 'first-line' (no recurrence yet).  My insurance company wouldn't cover any of it and my husband's would only cover up to $2000/yr.  At $8K per month, we just couldn't afford it.  I'm told that once I have a recurrence, then it will be covered.  It's not the nicest feeling for one to know that one has to wait to have more of one's body ravaged by this disease - and who knows where or how hard it will strike? - before one can access a life-saving drug. But all we can do is our best in any given circumstance, so that's what I'm doing.  I've accepted my disease and am living with it. How about you? 
  • Hi @Bluebird and all you lovely ladies! I missed it this week too (and last week).  We were in town for groceries yesterday during that time and the week before I was down and out due to a fall, but I'm okay.  I hope to check in tomorrow...we have friends dropping by so depending on what time they get here, I hope to chat with all of you then!  I hope everyone is keeping as well as can be and that you are all staying 'covid' safe!  Cheers to all, M.
  • Hey @maggiemae Sorry to hear about your fall. Hope you've recovered now and that you might join us tomorrow at 1pm EST. Love to "see" you there.  @Shortone have you had any answers yet regarding access to funding for Lynparza?  Hopefully you've met with some success.
  • Hi @maggiemae..sorry to hear of your fall..hopefully we can connect with everyone next week..I think I'm going to have to set reminders  and put sticky notes everywhere..maybe we can talk about chemo fog...one of these times..
  • @Fearless, I have been looking online at the Ontario Drug Benefit Program site. Think I may be covered but need to check with the SouthwestLIN. I'm attached to a Palliative Care Outreach Team which has given me free access to most of my meds. through the ODBP. It's my understanding that the Lynparza might be covered as well because I carry the BRCA-1 gene mutation. I have an in-person visit with the oncologist Sept. 15 so hoping to get some definitive answers there too, perhaps through the experts there at the cancer clinic. Otherwise, $8,000/month could be crippling for us to manage. The oncologist said I could expect about six months without the maintenance treatments. He said there's survival rate of two years on average if I take it. Without any kind of drug coverage, it's rather overwhelming. Trillium's another possibility as well, if we qualify. Fingers crossed for positive news.
  • @shortone, yes, work through your LIN.  They seem to have any number of ways to work through the system on your behalf. I am so hoping you can get the drug without a heavy financial burden.  I'm sure others will be interested to know what the final answer is.  Take care and we're all keeping our fingers crossed for you.
  • Good evening everyone!
  • Hello @kattie666, @nadiaC and everyone joining us in view only mode!
    Hope you are doing well this evening.
    We had had so much wind on the prairies, the nicest part of the day is now the evenings!
    I'm sure everyone is trying to soak up the last bits of summer.
  • Hello @cbot

  • Enjoy your evening everyone - the nice weather sure lifts the spirits.
    Reminder chat is also now daytime on Thursdays, as well as 24/7 - There are so many topics and good discussions her - thank you everyone for sharing your experiences and the support!
    Be safe and stay well; sending hugs of hope across the internet! :)
  • Good evening everyone! - hope this message finds you doing well.
    Another fabulous hot weather evening here on the Prairies. A quick check in from me today. I'm day 3-4  post chemo and not feeling the greatest.
  • Hello @Shortone and @Scarstef - how are you both doing this week?

  • Hello @Flowergirl. Having a good week. The side effects from the Aug. 4 chemo were minimal. My husband kept me on a regular dose of long-acting hydromorphone so thinking that may have made the difference. Have been functioning pretty normally. 

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