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

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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited December 2014

    I will ask my MO. Thanks for the heads up. Sandy, there is no rhyme or reason to insurance. Maybe single payer is the answer. Never thought I would say that.

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  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited December 2014


    Hey Barb .. just wanted to see how you are doing.  And no ... I never thought I would hear you say that either.

    Were you able to get the insurance thing straightened out?  I wonder if Femara or Arimidex would be covered by your insurance.

    I think of you all the time ... sending love.

    Bren

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  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited December 2014

    Hi Barb,

    Thinking about you today ... hoping you're doing okay.  Did you get the insurance thing straightened out?

    hugs

    Bren

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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited December 2014

    You are so right Joyce. hi Bren. I feel fine, no pain. All is good for now.

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  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited December 2014


    Barb ... I'm glad to hear you're not in pain.  Were you able to get the Aromasin?

    Sending hugs and best wishes,

    Bren

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited January 2015

    Barb I have not been on BCO in a very long time. Thought I would catch up and saw you on the 2010 thread and then found you on this thread. WOW I never expected to here this. I am so sorry you have been dealt this hand. I hope you had a wonderful Christmas despite have to deal with cancer again.

    Sherry


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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited January 2015

    Hi Sherry long time. Well it does truly suck but it is what it is. My Onc says he we keep me in remission 15 years or longer and I am holding him to it.

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited January 2015

    Barbara if anyone can do that you certainly can. You are one determined woman.


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  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited February 2015


    Hi Barbara,

    I've been thinking about you.  Hope you're feeling pretty good and not in any pain.  Did you get things resolved with the insurance company about the Aromasin?  How are you tolerating the AI medicine?

    Sending love and hugs

    Bren

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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited February 2015

    Hey Brenda! I feel fine. Been on letrozole almost two months and so far so good. Insomnia is the only se so far.

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  • 208sandy
    208sandy Member Posts: 2,610
    edited February 2015

    Hi Barb - I so remember the insomnia - I am on faslodex now and it's another estrogen sucking drug - hope it's working because I have the insomnia back - my PCP prescribed Ativan and it's worked for me but I only take it once or twice a week and a half dose at that (2.5 mgs) - I am very drug sensitive so Ambien and the like wouldn't work for me but you need to sleep so see if you can get some help. Just so you know I think of you often down there in the warmth and light - it's been just too much winter lately up here, not as bad as Boston but miserable just the same! Take care. S.

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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited February 2015

    Thanks Sandy. I think of you fondly and remember the trip to NOTL often. Good times. My doc wants me to take Faslodex in addition to Femara. I am resisting because of ONJ. I struggle with having had periodontal disease before and I am vigilant about my oral health. ONJ is the last thing I would need.

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  • 208sandy
    208sandy Member Posts: 2,610
    edited February 2015

    Barb - didn't know ONJ was a se of Faslodex - are you thinking of Fosamax perhaps - it does sometimes have ONJ as a se.

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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited February 2015

    Maybe I am remembering what he wants me to take incorrectly.

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  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited February 2015


    Hi Barb,

    Glad to hear you're tolerating the Aromasin okay.  I think it's the bone drugs that can cause TMJ.  Sorry to hear about the insomnia.  That sucks.  Nothing worse that not being able to get to sleep.  Like Sandy wrote, I think I would check into getting an Rx for sleep.  I regular take something for sleep .... my mind won't stop racing!

    I wish we could all do another NOTL trip together.  I miss everybody too.

    love and hugs,

    Bren

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  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited March 2015

    Hi Barb,

    It's been a while since we've heard from you.  I hope you're doing well. 

    love and hugs

    Bren

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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited April 2015

    Hi Brenda! I haven't been on here lately. Feeling good and the last scan shows no progression and dead cancer. YES!

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  • 208sandy
    208sandy Member Posts: 2,610
    edited April 2015

    Barb - good to "see" you and great news!

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  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited April 2015


    Barb ... so happy to hear from you ... love the fabulous news!  Are you taking Aromasin or Arimidex ... can't remember which it is.  I'm hoping to hear NED from you on your next scan.

    hugs and love

    Bren

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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited April 2015

    Bren, I am taking letrozole (femara) and it is working great. The only se is insomnia so the doc gave me Ambien 5mg which I cut in half. I take it maybe once a week.

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  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited April 2015


    Barb ... that's so great about the Femara!  Glad you got something for sleep ... even though you don't take it regularly, it's there when you need it.  How's Marty and the band doing?  Think of you often.

    Sending hugs

    Bren

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited April 2015

    Barb so glad to hear you are doing good

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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited June 2015

    Hi Joyce. Things are OK. I am tolerating the letrozole well with minimal side effects. I see my onc next Tuesday so we will see how the tumor markers are then. Fingers crossed.

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  • 208sandy
    208sandy Member Posts: 2,610
    edited June 2015

    Hi Barb - good to see you! I see my onc on Tuesday also - we can compare notes...

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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited June 2015

    Hi Sandy, here's hoping for a drop in my tumor markers from 29 in March. Hoping for 20.

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  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited June 2015


    Barb and Sandy ... I've been thinking about both of you lately.  So nice to hear from you both.  Hoping for good news for you  guys on Tuesday.

    hugs

    Bren

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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited June 2015

    Oh Bren, I miss you and all the peeps from our NOTL trip. What fun. Love you!

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  • 208sandy
    208sandy Member Posts: 2,610
    edited June 2015

    Hey there Bren - ah yes, NOTL wonderful time had by all.

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  • bluedahlia
    bluedahlia Member Posts: 6,944
    edited June 2015

    Yes it was fun and sending good vibes for you both!

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  • theziz
    theziz Member Posts: 159
    edited July 2015

    Hi Linda,

    I had a lymph node biopsied in May and it came out positive for reoccurrence.

    I live in Costa Rica so we went to the USA to get a second opinion. Luckily I was able to get an appointment with Dr. Charles Vogel in UM Dierfield. PET scan showed lit up in some areas as my right hip, on my back and in some lymph nodes in my chest. I'm now taking letrozole and ibrance and I tolerate okay. I used to do yoga before but I'm not as flexible as I used to be before the drugs.

    Also my skin broke up after the Started to inflate the implant that I got after I had athe mastectomy. So if everything works out with this drugs I will have to have another surgery .

    I would like to say hi to all of you here and that I always pray women with BC.

    Aziza

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