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PET scan shows lit up chest lymph nodes after 4 years NED

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  • barbaraa
    barbaraa Member Posts: 3,548
    edited June 2014
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    They always hovered between 16-20 and they went to 26 then 33 then 43 then finally 54. I am optimistic but...

  • elimar
    elimar Member Posts: 5,882
    edited June 2014
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    Didn't have this thread bookmarked, but glad to look in and see that there was shrinkage and disappearance of some nodes.  I hope your numbers are rising due to unfathomable and idiopathic reasons.  They are strange like that sometimes, right?  Will stay tuned til August, hoping for even clearer scans and low TMs.  Time to exhale and have some summer fun.

  • barbaraa
    barbaraa Member Posts: 3,548
    edited August 2014
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    OK folks. I am sooooooo happy to report that the results from my CT scan this week came in and the nodes are GONE! WOO HOO! Happy dancing my brains out! We are doing a follow-up in November: CT of chest neck and abdomen followed by a bone scan. I am so relieved but I know you all understand the relief. Now back to life as usual.

    Thanks for being there for me!

  • bluedahlia
    bluedahlia Member Posts: 302
    edited August 2014
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    YAAAAAAAAAAAAAAAAAAAAAAAY!

  • 208sandy
    208sandy Member Posts: 582
    edited August 2014
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    Best news EVER!!!!  Doing happy dance with you!

  • Bren-2007
    Bren-2007 Member Posts: 842
    edited August 2014
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    Hey Barb ... I had been thinking about you .. and here you are!  Great news!  Dancing right alongside of you.

    Are you going to have scans every three months?  The anxiety must be stressful ... so glad you get a three month reprieve and time to rest and enjoy life.  Is hubby still playing?  Time to get out and celebrate!  woohoo!

    love ya,

    Bren

  • denny123
    denny123 Member Posts: 1,445
    edited September 2014
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    Barb-did you have chemo for the nodes?

    So far, mine are responding to Kadcyla.

    Denise

  • barbaraa
    barbaraa Member Posts: 3,548
    edited September 2014
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    No Denny, they just starting shrinking and now they are gone. ?? I am thinking that He moves in mysterious ways.

  • denny123
    denny123 Member Posts: 1,445
    edited September 2014
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    Barbara,

    Yay for you!!!  Wish mine would go away without chemo.....

    I think that it is a true miracle that I am still here as a 12 year survivor of Stage 4.  My doctors agree.

    God & chemo= a great combo....

  • barbaraa
    barbaraa Member Posts: 3,548
    edited November 2014
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    Well sh!t. I have mets to L1,2,3. Great. And it took a year to figure this out. Sigh. Aromasin here I come.

  • linda714
    linda714 Member Posts: 11
    edited November 2014
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    sorry Barbara,


    Since you are in Tampa. I hope you are being seen at Moffett they seem to be rated the best in Florida. I am at university of Miami. I am having alot of issues but I am stage 4 and on trial meds. Metastasized to lymph node pressing on esophagus. Scans Dec 5.

    Try to have a positive day.

    Linda

  • barbaraa
    barbaraa Member Posts: 3,548
    edited November 2014
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    Thanks Linda. I am very happy with my onc and St Anthony's. Sending you hugs, pal.

    I am trying to be positive.


  • Nettie1964
    Nettie1964 Member Posts: 627
    edited November 2014
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    BarbaraA, if you don't mind saying, did you have symptoms and is so what were they?  I ask because I've had back pain for a year!

  • barbaraa
    barbaraa Member Posts: 3,548
    edited November 2014
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    No symptoms. My CA 27/29 kept rising.

  • 208sandy
    208sandy Member Posts: 582
    edited November 2014
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    WTF Barb - so sorry to hear this - I know you must be reeling from the shock - just wanted you to know I'm here to listen - I am Stage IV now too - have been for two years - was on Aromasin/Afinitor combo back in May/June - knocked some of my mets back but had to stop treatment as I was slammed by it - going back on chemo this time Halaven in mid-January - my choice to have no treatment till holidays are over - aromasin is a good AI - lots of friends on it and tolerating it well - hope you're not in a lot of pain - sending hugs, S.

  • barbaraa
    barbaraa Member Posts: 3,548
    edited November 2014
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    Aw Sandy sorry to hear that. I hate effing cancer.Yes, I am still trying to process this. I hope halaven kicks mets-butt! Not looking forward to aromasin. I hate taking drugs. Sigh.

  • bluedahlia
    bluedahlia Member Posts: 302
    edited November 2014
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    Oh Barbara, I did not want to hear this. Sending mega hugs. You are special to me since Niagara. You will be in my thoughts and positive vibes.

  • barbaraa
    barbaraa Member Posts: 3,548
    edited November 2014
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    Thanks Blue. Holding onto the good vibes.

  • Nettie1964
    Nettie1964 Member Posts: 627
    edited November 2014
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    So sorry for you, BarbaraA. Can't help but notice that you don't show any prior treatment, did you have any?

    Praying that this treatment will send you to NED.

  • barbaraa
    barbaraa Member Posts: 3,548
    edited November 2014
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    Nettie, I had radiation, chemo was not indicated with my tumor.

    Joyce, it well and truly sucks. I hate cancer. My 5 year would have been 4/28. Sigh.

  • Nettie1964
    Nettie1964 Member Posts: 627
    edited November 2014
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    I understand and sorry if I was too personal!  I just like to know some background!  I live on the edge everyday, haven't quite adjusted to my "new normal" if there is such a thing!  And when I see ladies that progress it just makes me very sad!

    As said a thousand times on here, why can't we find a cure??

  • dlb823
    dlb823 Member Posts: 2,701
    edited November 2014
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    Oh, Barb, not the news anyone ever wants to hear for any of us. Just know that as tough as it is to wrap your head around initially -- and it will be for awhile -- many women with tiny bone mets do very well for many, many years, and there's absolutely no reason to think you won't do extremely well too, especially since what they found is almost microscopic. But I know it plays huge mind games with you at first.

    If and when you feel like it, stop over and check out the Bone Mets thread. It's a great group of very supportive women who were literally a lifeline for me when I was initially re-dx'd. (((Hugs))) Deanna

  • barbaraa
    barbaraa Member Posts: 3,548
    edited November 2014
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    Thanks Deanna. I am still trying to process this.

  • Bren-2007
    Bren-2007 Member Posts: 842
    edited November 2014
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    Ah shit Barb.  Not what anyone wanted to hear.  Your news knocked the wind right out of me.  I am so very sorry you're having to navigate your way through this.  Thinking of Marty as well and sending love to both of you.

    hugs

    Bren

  • linzer
    linzer Member Posts: 50
    edited November 2014
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    So sorry Barb. I'll be thinking of you. Hugs, Linda

  • barbaraa
    barbaraa Member Posts: 3,548
    edited November 2014
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    Thanks Bren and Linda. One good thing is the mets are so small I am in no pain. :)


  • Bren-2007
    Bren-2007 Member Posts: 842
    edited November 2014
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    Barb ... I'm glad you aren't in any pain.  Just wanted you to know I've been thinking about you.

    hugs,

    Bren

  • barbaraa
    barbaraa Member Posts: 3,548
    edited November 2014
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    Now if only my stupid insurance company will approve the aromasin and I can get on with it.

  • 208sandy
    208sandy Member Posts: 582
    edited November 2014
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    WTF Barb - no approval necessary up here in Canada - onc. said I'm putting you on it and I was on it that day (that's when I was on AA combo) - why wouldn't they approve - is it that much more expensive? Hope you had a nice Thanksgiving - we're having Florida weather today in our part of Ontario - temps in the low 60s - tomorrow back to freezing - no wonder my nose drips constantly! Take care, S.

  • linda714
    linda714 Member Posts: 11
    edited November 2014
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    hi Barbara, has anyone said you could get on clinical trial like Letrozole and palbociclib? If you didnt have chemo like myself I just had radiation 18 years ago so that made me eligible for trial. The meds are paid for within the trial protocol. I am at U of M in Deerfield where the principal investigator of the trial is. My issue usually in a medastinal lymph node in chest pressing on esophagus.

    Linda