From IVb UPSC to NED (Hey, that rhymes!)

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pinky104
pinky104 Member Posts: 574 Member

I had very good news today.  I've gone from stage IVb UPSC to NED again (my second time over the course of 7 years).  Nothing was found wrong with me in my PET scan from last Friday.  I haven't gotten my CA-125 results yet because the labs were drawn just before my appointment and they take a little longer than my other labs.  My hemoglobin was only up 0.1 from last week, so I'm still anemic at 9.9.  My platelets came up from 30,000 to 57,000, enough to get a flu shot, but not enough to get my epidural steroid shot for my herniated disk.  I have to go back in two weeks to have my labs done again to see if my platelets are at least 75,000 for that.  I see my GYN/onc. on 10/16 where I'll discuss my genomic testing results if they're in and the parp inhibitor if my GYN/onc. thinks I should take that.  My oncologist told me that the side effects I'm likely to encounter from that are low blood counts and GI symptoms.  He said that in general, the drug only works for months, but if it seems to be working and not causing serious side effects, it can be taken for years.  I go back to the oncologist I saw today in another 6 weeks, with labs a week before, where I assume he'll be asking me what I discussed with my GYN/onc. and whether or not I will start taking the parp inhibitor.  He'll probably be following my treatment if I decide to take that.  He'll also be following me for my hemochromatosis, as he has been for the last 6 years.

It was good to get such a great report especially as I skipped one dose of Gemzar to go on vacation this summer, had two doses of chemo given late because of low blood counts, had reduced doses of my chemo meds for most of my visits, and wasn't given the full dose one time because of the allergic reaction I had to Carboplatin most of the way through my infusion that day. 

My birthday is this weekend, so it was a great birthday present to hear the good news. 

 

 

Comments

  • derMaus
    derMaus Member Posts: 558 Member
    edited October 2017 #2
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    Pinky, that's the best news

    Pinky, that's the best news of all !!! Congratulations, and may Mr. Ned be your lifelong companion. Thank you for sharing the good news !!!  B

  • hopeful56
    hopeful56 Member Posts: 73
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    What wonderful news.  I hope

    What wonderful news.  I hope you are NED forever!

     

  • Amatullah
    Amatullah Member Posts: 36
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    Yay!!

    Good for you Pinky.  I had to look up parp inhibitor to see if that was a good thing or a bad one, lol.  Cancer is an education and first we have to figure out what language we're speaking, before we actually learn the language!!  I'm delighted for you!

  • Soup52
    Soup52 Member Posts: 908 Member
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    Fantastic early bday present

    Fantastic early bday present !

  • DottieDean
    DottieDean Member Posts: 36
    edited October 2017 #6
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    Great news.  thank goodness

    Great news.  thank goodness for hope.  Hope you dance with NED for many, many years.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited October 2017 #7
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    Happy Birthday to you, Pinky!

    Happy Birthday to you, Pinky!!!!

    Again, so glad you got such an awesome report.

    Love and Hugs,

    Cindi

  • Kvdyson
    Kvdyson Member Posts: 790 Member
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    Overall, a very positive

    Overall, a very positive report. I hope you get to celebrate the heck out of this birthday. Make it one to remember! Kim

  • ConnieSW
    ConnieSW Member Posts: 1,681 Member
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    Kvdyson said:

    Overall, a very positive

    Overall, a very positive report. I hope you get to celebrate the heck out of this birthday. Make it one to remember! Kim

    Happy Birthday

    and many, many, many more. 

  • Nellasing
    Nellasing Member Posts: 528 Member
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    Great News Pinky!

    So glad to hear this update and sending wishes for a very HAPPY BIRTHDAY- CELEBRATE!!!  ((((HUGS)))

  • Kaleena
    Kaleena Member Posts: 2,088 Member
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    Good news and Happy Birthday!

    Thanks for the update Pinky and happy to hear the good news.  Have a fabulous birthday this weekend.

    Kathy

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,388 Member
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    Great news, pinky!!!!  So

    Great news, pinky!!!!  So happy for you. 

  • Editgrl
    Editgrl Member Posts: 903 Member
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    So glad to hear this

    Oh, Pinky, what a great birthday present!  Have a great weekend!

  • pinky104
    pinky104 Member Posts: 574 Member
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    What a Team!

    I logged onto here tonight wondering if I had any replies to yesterday's news.  Wow, you girls are great!  I couldn't believe how many replies I had.  Thanks for all your support, and I do hope I don't ever have to go on this ride again, but if I do I know you'll be there right along with me supporting me.  I hope you all have as much success with your own battles.

    If anyone wants to look up the parp inhibitor that I might end up taking (if my GYN/onc recommends it), it's called Zujela. It sounds a lot like chemo, with worse side effects as more people get them.  It also has a 1.4% chance of causing leukemia, so it's not without its risks.  It's supposed to help keep this beast from coming back. 

  • dgrdalton
    dgrdalton Member Posts: 161 Member
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    Happy Birthday!!! Great news!

    Happy Birthday!!! Great news!

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
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    What a great birthday present

    What a great birthday present!!!  I sure hope this is it and you enjoy living with NED the rest of your long, long life!  You are an inspiration to all of us that a recurrence is not a death sentence.  This is just such great news!!!

    Love,

    Eldri

  • DottieDean
    DottieDean Member Posts: 36
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    What a birthday hday present!

    What a birthday hday present!  Congrats!

  • Cass83
    Cass83 Member Posts: 151 Member
    edited October 2017 #18
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    happy birthday!

    This birthday is one to celebrate! Hope you have a wonderful day!

  • pinky104
    pinky104 Member Posts: 574 Member
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    Thank you

    Thank you again, everyone, for all your positive comments and wishes for a happy birthday.  I'm heading to Vermont tomorrow to celebrate my birthday and to eat out at a special old restaurant in Manchester.  It's quite quaint and has been around since the 1700's.  I hope to get some shopping done, too, in the gift shops if they are open on a Sunday there.  My husband got me a beautiful chocolate cake and some surprise presents, in addition to some I requested.  I've been admiring the pretty pink gift wrap.  Yes, pink, my favorite color.  Just wish I could get rid of this cold (bronchitis/sinusitis?).  The antibiotic I got at the cancer center isn't working and it's the strongest one I usually take.  I'm allergic to a bunch of them.  Maybe it's still in the viral stage.

    Hope everyone has a beautiful fall weekend.  The temperatures are going to be like summer here (again!).