Stage IV NED crew : let's support each other

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2015
    Thanks, boo. Summer is a great time for relaxing and doing all the stuff I defer during the school year, so I haven't been dwelling on the biopsy. Dermatologist seems to think that the excision and electro desiccation will be all that's needed. Path report should be in by as soon as Tuesday.

    Amy, two weeks without being connected sounds very relaxing. I don't think you're in denial, because what good is worrying going to do you at this point? You may as well enjoy until scan time. I'm on tap for September too so we'll worry together when the time comes 😉.
    Caryn
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  • Boo123
    Boo123 Member Posts: 182
    edited July 2015

    Amy, when you next go on a camp out in the deep woods, can I come too? Sounds wonderful. Your camp fire philosophy sounds a good one.

    Boo

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited July 2015

    Amy - 2 weeks disconnected - how wonderful, tho initially it may make me crazy

    Mrs Divine - you are right, listing what we didn't get to is a way of putting ourselves down

    Caryn - Good news on Tuesday!

    Very wise women on this board

    Nel

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited July 2015

    Funny you should bring that up, DivineMrsM, because I recently started listing my accomplishments at the end of the day, out loud to my family. Also I say if I did something especially healthy like taking a walk or eating lots of veg. I'm intentionally letting go of the list of things I didn't accomplish, or the things that weren't so healthy.

    AmyQ, thanks for sharing your woods philosophy. I find any time I spend in nature to be healing, and outside is a great place to tune into our senses and be in the moment.

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  • agness
    agness Member Posts: 576
    edited July 2015

    Sent my boys away for a few days to let me heal from brain surgery. My almost 5yo cried so much and it just killed me. I know it is really important to let me heal though (tumor in cerebellum). My partner, their dad, is going to keep things going for them this week, playing and adventuring.

    I hate, hate, that they have to see and experience any of this. I hate getting back on the cancer conveyor belt. I hate the unknown.

    You ladies are wonderful and inspiring and I'm so glad to have your company. I am just having a rough time transitioning to being an active patient again.

    Still, I was doing so poorly from my tumor in my head that it is a relief that the pain will be gone finally,

    Hoping to find a happier place as I get stronger.

    Ann


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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2015
    Happy news! The path report shows that my skin lesion was not basal cell carcinoma. My dermatologist called it a "very angry pre-cancerous" lesion. It will need no further tx. I was very, very relieved. It still feels a bit raw and my seat belt hits the area when I drive, but I can handle that.
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  • AmyQ
    AmyQ Member Posts: 2,182
    edited July 2015

    Hip Hip Hooray!!!

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  • Boo123
    Boo123 Member Posts: 182
    edited July 2015

    Fantastic news! So pleased for you!


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  • agness
    agness Member Posts: 576
    edited July 2015

    Excellent news. Let's heal that baby up and move on once again.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited July 2015

    Caryn, you can get a seat belt clip at an auto parts store or online.

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited July 2015

    Yeah! Small pillow underneath the seatbelt strap. Did this after MX,works wonders

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  • Cafelovr
    Cafelovr Member Posts: 1,534
    edited July 2015

    Well, had my 3 month dr's appt. Lymphedema has set up in my arm, and I have a Pet Scan on 10/19. Whoo hoo. Fun times ahead.

    Talking about Ativan...I was on Xanax for 6 years, when they abruptly took me off and put me on Ativan. I don't think I slept for 3 weeks! They put me back and Xanax, and I love it. I'm sleeping better than I have in a long time.

    Still rocking NED!!

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2015
    Cafelovr,
    Congrats on continuing NED, boo on lymphedema. Hope it's controlled quickly with minimum hassle.
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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited August 2015

    2 years ago today I was told IBC had progressed to my adrenal gland - stage 4. Right back into treatment, Herceptin and tykerb. I have been NED since October 2013 Wahoo!!!

    Grateful to be here today on this beautiful summer day

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2015

    Nel,

    Congratulations! May you dance with NED for a very, very long time.

    Caryn

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  • agness
    agness Member Posts: 576
    edited August 2015

    My HER2+ tumor is gone, my PET scan is clean and right now my prognosis is excellent. We are going to do radiation to the tumor bed in a few weeks and active monitoring going forward. My oncologist thinks that we might have gotten it all and I could be in the all clear. Things are looking good and I'm feeling optimistic.

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited August 2015

    agness, that is amazing news! Thanks for sharing.

    Amy

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  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited August 2015

    I need to throw my hat into the ring also as I am NED a year now. My next scan is in September, so that could be the end of NED. As we all do, I live in 6 month intervals.

    My 15-3 marker is 10 so I am hopeful for more NED time.


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  • AmyQ
    AmyQ Member Posts: 2,182
    edited August 2015

    I'm with you Winningsofar - scan again in September...hoping for the best, expecting the worst. Suddenly have a weird rash in multiple locations. At first I thought it was poison ivy but now worried, skin mets...yikes. Will see what September brings but since summer isn't over, I'm going to wish my worries away and enjoy what's left. Let's hope you continue to dance with NED for many more years.

    Amy

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited August 2015

    I love how many of us are living with NED, now for many more of us and a cure!

    agness - keep us posted good things coming your way

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  • KiwiCatMom
    KiwiCatMom Member Posts: 2,553
    edited August 2015

    Great news to read from all of you! :) made my day happier and brighter!

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited August 2015

    Ditto!

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  • Xavo
    Xavo Member Posts: 364
    edited August 2015

    NED sisters, I have a question for you. How does one know when she is NED? You need a scan report to have it written there: NO EVIDENCE OF ACTIVE DISEASE in the first place, right? Now my real question, in that case, is your scans showing a complete clean picture?

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited August 2015

    NED has been my own interpretation and not words uttered by my onc. But if the shoe fits...buy a hundred pairs!

    Amy

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  • Lauriesh
    Lauriesh Member Posts: 692
    edited August 2015
    My scans have said " no evidence of metastatic cancer" . So they are no different then if a " healthy" person would have a pet scan.
    No evidence of active disease means that there are still signs of cancer on a scan, but it is not active ie- it doesn't light up.
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  • Goodie16
    Goodie16 Member Posts: 446
    edited August 2015

    My last scan in April actually contained the words "no evidence of disease." My next one is in September. I pray those words are still there.

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  • KiwiCatMom
    KiwiCatMom Member Posts: 2,553
    edited August 2015

    My doc said "partial remission, no evidence of active mets"

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  • Boo123
    Boo123 Member Posts: 182
    edited August 2015

    My onc says scan clear, thus I am in remission. He's never used the expression NED, but that's my interpretation. I see NED and remission as interchangeable terms. Boo


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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2015
    My mo has used various phrases (clean scan, no evidence of active disease etc).
    The report itself notes no active uptake, but does note that bone met is necrotic (and has been since rads to the area). A rose by any other name...
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  • Xavo
    Xavo Member Posts: 364
    edited August 2015

    Thank you lucky ladies! I hope one day I also could join you. May your NED status be lasting for ever!

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