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Stage IV NED crew : lets support each other

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Comments

  • heidihill
    heidihill Member Posts: 1,858
    edited December 2015

    Yes, lulubee, so true! Our bodies are working so hard. The cells in our bodies are repairing and renewing themselves every day. My skeleton for example is mostly new bone compared to 8 years ago. That has got be good news. At least as long as I can continue lifting weights that would have broken my bones then. In many ways a body needs to be challenged in order to get the signal to repair and renew certain cells.

    Boo, singing in a choir sounds like a great activity. Like lulubee, I'm also thinking of de-cluttering and streamlining my life and closets. I started the process once but didn't continue and things started piling up again. Oh well.

  • Goodie16
    Goodie16 Member Posts: 297
    edited December 2015

    I love reading of all the inspiration to start a new year out with positive vibes...

    My plan for 2016 to get as "healthy" as I was before my diagnosis in 2014. I was active, in great shape, and genuinely living my life. The diagnosis knocked me on my butt. I was just recovering from the initial shock and making plans for 2015 to be better when the met on my brain was found. So here's to making 2016 my year! My best friend and I have already planned our annual girls trip to Rocky Mountain National Park in Colorado in September. We've got to be in shape to hike the park, so we have a work out plan in place for the months leading up to it. Here's to a great 2016 for all of us!

  • intothewoods
    intothewoods Member Posts: 179
    edited December 2015

    Hello everyone,

    Delighted to have clicked on this thread! I lurk more than I post and will add this to my favs too! I am NED since my September scan which says no evidence of active disease. I had a recurrence to the chest wall that was excised and a met to my 8th rib that was radiated.

    Lulubee, I LOVE your reflection on the turning of the year and "stirring up the coals under my fire to help me burn brighter and longer." What a wonderful metaphor.

    Here are my desires:

    1. Sit in meditation

    2. Spend less

    3. Move more

    4. Eat well

    5. Find balance at work

    Numbers 1, 3 and 4 I do okay with but I would like to ramp those up. Numbers two and five are biggies for me. This end of the year has brought clarity that I need to leave my current employment. I'm in the process of determining whether to retire by this time next year or go on disability.

    Warm wishes to all for peace and joy

    Lisa

  • babyduck
    babyduck Member Posts: 32
    edited December 2015

    I'm  NED but would like to join this thread...If that is ok. I have been holding steady on Herceptin and now we've added Perjeta. I have a PET and brain MRI tomorrow..... yikes. Then treatment Wed. Thougths and prayers would be appreciated. You all seep like you have such GREAT attitudes.

    Glad we don't go though things alone.

    Tara

  • Boo123
    Boo123 Member Posts: 119
    edited December 2015

    Hi Tara / babyduck, you are very welcome to join this thread, pleased to hear from you! Good luck with your scans tomorrow, fingers crossed for a good outcome and that your continued treatment keeps you NED. Let us know how you get on with your scans, we will all be hoping for good results.

    Boo


  • Boo123
    Boo123 Member Posts: 119
    edited December 2015

    Hi into the woods, and welcome to the NED thread. I love your list of desires, I think I will have a go at creating my own list for 2016. I am trying to allow myself to look ahead with optimism, as worrying is just a waste of my precious energy.

    Boo

  • Boo123
    Boo123 Member Posts: 119
    edited December 2015

    Hi Goodie...well that hike sounds amazing, please keep us posted on your training and the actual hike trip itself...it sounds motivational and is making me think about setting myself a challenge...maybe not a huge hike like yours, but still something I can achieve, I do love to walk. Hmmm...I will have a think and get back to you! Good luck for you plans for 2016.

    Boo


  • intothewoods
    intothewoods Member Posts: 179
    edited December 2015
    Boo thank you for the welcome. And thank you for this thread. NED is a wonderful but complex place to be and it is difficult not to go to a place of worry even though we know it is a waste of precious energy. When I practice sitting and mindfulness it helps with that.

    Goodie one of my favorite ways to move is hiking. You certainly have something great to look forward to!
    Babyduck, best wishes for a good scan today!
  • Andi67
    Andi67 Member Posts: 314
    edited December 2015

    Like Ronnie Kay said a month or so ago.... I tiptoe around this thread but not sure I have every contributed. I have been NED for almost three years... but have this idea that if I say it out loud it will go away. Weird, huh? And, too late now.... here I am. I love lulubee's new years thoughts.... I need to do many of the same things you are all suggesting... better diet (more smoothies, veggies... finally stop eating sugar)...take my supplements on a REGULAR basis instead of sporadically.... COMMIT myself to yoga instead of just buying the cute yoga clothes, yoga mat, yoga cloth, yoga carrying case.... and then never going. Run the marathon I have been talking about even though I know my time will never again be close to what it was....I'll have the same tears of joy in my eyes when I finish....even if it takes six hours. Stuff like that. Plan vacations that are more than six months out. I feel so blessed to be in this place, and so inspired by those of you that have been NED for YEARS and YEARS. And curious about those that have stopped treatment. I have taken "vacations" from my Herceptin every once in a while.... but not more than six months. IS there a point where we can stop? I need to meditate, too..... even though I don't know how.

    Goodie - besides running, hiking is my favorite thing. This past summer I did a hike from ASpen to Crested Butte and back with a fantastic group of 11 women. We had a blast - went in July at the peak of the wildflower season here in Colorado. I want to go back this summer with my family. It's hard - 15 miles each way over a 13K pass... but so worth it. You should add that to your bucket list!

    Thanks everyone else for the inspiration and the encouragement.... I will try to stop lurking and start having more confidence in my NED status!

    Happy New Year!

    XO

    Andrea

  • Boo123
    Boo123 Member Posts: 119
    edited December 2015

    Welcome Andi, and how fabulous to hear of three yeas NED, that is awesome, I am glad that you stopped tiptoeing and joined in, your news is motivational and I wish you continued stable NED status.

    I so understand the good intentions vs actual doing of stuff...but I am determined to change my lazy ways, so this week I joined my local pool, it has an ap that uses a watch-like device you get given when your membership card is swiped, it records your whole swim and gives details of stroke, lengths, distance, calories burned and more besides. I am a real carrot and stick person, so I find this motivating and hope that it will get me to the pool at least twice a week. I've set myself a first cumulative distance challenge - swim the distance up the Hudson to the Statue of Liberty and back! It should take about a month if i go to the pool a few times a week....

  • intothewoods
    intothewoods Member Posts: 179
    edited December 2015

    Boo hoping that the carrot works for ya! Swimmng is such great exercise. I've done it twice:-)

    Andi, I think I recall you posting about that hike you did in July!  Your relatiionship witth  yoga brought me back  to tennis. I had a killer forehand but no serve so I didn't win much but I loved the clothes. I can't get to a public yoga class but have developed a consistent home practice usually done in my Jammie's.

    Just having written that I want to move more has me taking stairs instead of escalators last few days and parking farther from stores.  faslodex has me at NED but it's making me gain weight 

  • MicheTheVanquisher
    MicheTheVanquisher Member Posts: 62
    edited January 2016

    Happy New Year Nedsters!

    Great reading everyone's stories, plans, hopes and admissions. I don't know if I posted here before and I'm a sporadic visitor to the boards but definitely draw inspiration and hope and a sense of community from you all. I too have a hard time saying I've reached NED and am staying there. Yet it seems to be true. Two years ago this month I was diagnosed with HER2+ liver mets. I had a great initial response to THP and now after being on H&P for nearly two years and participating in a vaccine trial last spring, my tumor markers hum along around 10 and I live with the side effects--both physical and mental--and I try not to think of how I was before. This year I'd love to find peace with this new normal of every 3 weeks visiting the cancer center and not being as active as I was 3 years ago but still being quite active most days. I too would like to eat well, move better, spend less, tidy up, find ease of mind, and move into the future with real hope and happiness. And that is what I would with for every one here--a long future filled with happiness and ease of mind and body and health, glorious health in the dance with NED.

    Love to you all,

    Michele

  • gilmel01
    gilmel01 Member Posts: 6
    edited January 2016

    I would like to join this group. I was diagnosed with Stage II TNBC around my daughter's first birthday. Then a single lung met that had been there all along had doubled in size and sounded the cancer alarm. I will never forget that day, February 13, 2015. Had it removed by wedge resection making me NED and did 4 cycles of gemcarbo to clean everything up. Am currently depleting the copper in my blood with tetrathiomolybdate. Dr. Linda Vahdat at Cornell is trying to get phase III going. My daughter is now 3 and I have scans next week which is really scaring me. Best of luck to all of you and I would love to hear from other stage IV TNBCers out there.

  • Boo123
    Boo123 Member Posts: 119
    edited January 2016

    Hello gilm, and welcome to this group, its a very supportive place and I hope you keep checking in with us all to let us know how this shape up with you. Good luck with your scan, I hope they show continued NED. You've had a huge journey to get to NED, fingers crossed that this is where you'll stay. Best wishes, Boo


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited January 2016

    I've been reading everyone's new year's resolutions here, and it seems like a great place to jump back in. So, when I was first diagnosed with the stage iv recurrence, one of the things I most wanted to do without delay was take a trip with my husband, and also take a family vacation. It had been so long, and of course I realized that there was no way to know how long I had left. Well it has been over a year since I finished chemo, and still no trips. So I am determined to make those things happen this year, in spite of what the bank account says. The other thing is that I have reached a place with my dance group where I could audition to take it to the next level. I think I could do it! But will it be too stressful or too tiring? I don't want treatment fatigue to stop me, but I know that mind over matter can only take you so far. At the moment I am thinking, "Carpe diem!"

    I'm feeling scared that my lack of exercise and too much chocolate in December will result in NED leaving me. I know, I know. But I can't help thinking it.

    Hello and welcome to all the new posters, including intothewoods, Andi, babyduck, Miche, and gilmel01!

  • Nel
    Nel Member Posts: 597
    edited January 2016

    Shetland,

    Go for it all. I have taken a trip every year with my kids since stage 4 dx. I am robbing my retirement account - but not sure I will be here to use it, so why not. The fatigue is ever presnet for me due to treatment I am on. As my oncologist tells me "sadly, I think you will be fatigued for quite some time, as treatment is working so well" A double edge sword. Try out for the dance and then pace yourself as you need.

    Check out little pink houses of hope. They provide vacations for women and their families. My kids and I went last year - they do a great job! Everything is covered you jsut have to get yourself there. Pretty simple application process - give it a shot. They have couples weeks as well

    Best

    Nel

  • intothewoods
    intothewoods Member Posts: 179
    edited January 2016

    Shetland, dance group? Audition for next level? I'm intrigued! Do it! Like you, I am worried about the effects of treatment fatigue and that more than my usual glass and a half of wine will have NED leave. My stylist said yesterday as i was thinking about going more red, "life is happening now."

      I'm more red 

    :-)

  • Texasrose53
    Texasrose53 Member Posts: 290
    edited January 2016

    Hi Gilmel01...we do have a Triple Negative Stage IV discussion board. You are welcome to join us. It is a small group but a great group of ladies.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited January 2016

    Thanks for the encouragement, Nel and Woods. I'm pretty sure I've decided to audition. If I that shows I am ready, that will be when I have to decide what I am up for. So you got red hair? I think red hair is so pretty. Wise stylist. Nel, where have you gone on those vacations?

  • gilmel01
    gilmel01 Member Posts: 6
    edited January 2016

    Thank you all for welcoming me. I found out today I am still NED and it will have been a year next month of being NED. I am thrilled!!!!

  • Nel
    Nel Member Posts: 597
    edited January 2016

    Shetland,

    We went to Bermuda, Southern California and last year to the Outer Banks with Little Pink Houses of Hope. My kids are 17 and 22, so about 5 days together is all we can handle LOL Trying to decide if we can do something this year HHHmmmmm

    Where are you thinking???

    Best

    Nel

  • Boo123
    Boo123 Member Posts: 119
    edited February 2016

    Hello, well it is a bit quiet on this thread...which I hope means good news all round and everyone out and about leading their lives. I got a cc of a letter between my onc and my insurance company today, they had asked him for a review of my position and close monitoring plan, which he set out in detail. They had also asked him for a prognosis, and he refused to give one as he said it is impossible to say. That made me super happy.

    Boo.


  • Teakie88
    Teakie88 Member Posts: 97
    edited February 2016

    Boo: Your insurance company almost makes me think not too highly of them, almost like they were hoping it was bad so that they could quit having to spend money on your treatments. I hope I'm wrong in my thinking on that and just glad that your onc didn't make any predictions on your part. After all, how could he? No one knows for sure anyway. Glad to hear you're still doing well as am I. Ann

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2016

    What was the insurance company up to, Boo? Were they trying to pay for fewer scans or something? And would they refuse claims if your prognosis was good, or bad? It sounds like your onc is wily enough to know their game.

    I like it when my onc says things like, "If worse comes to worse and it comes back, I would put you on X treatment." Like she really believes in that 4%. On the other hand, she is scanning me every three months.

    Nel, that's fantastic that you have taken those trips with your kids every year. I was thinking tropical.

  • Goodie16
    Goodie16 Member Posts: 297
    edited February 2016

    Boo, My onc and I are fighting with my insurance right now too. They refused to pay for my PET last September because there are "other" tests that are equally effective at diagnosing cancer. We are on round 2 of appeals. Insurance issues drive me batty.

  • Boo123
    Boo123 Member Posts: 119
    edited February 2016

    Hi Shetland, Teakie, Goodie, everyone, that's what I love about this site - you post something, and folk read it and respond so quickly - its so supportive!

    I have insurance through my job, and my business for reasons beyond my understanding, changed from one insurer to another at the start of the year. Despite assurances that the transition would be seamless and would not cause stress to ongoing claims, the transfer process has been a real pain, with the new firm making heavy weather out of everything, and even making one mistake in a claim, so i'm not that impressed with their approach so far. Sigh. And I got on really well with the team from the previous insurer, always so chatty and kind when I called on a regular basis to get the approval codes...I miss them!

    Still, I do think that I am lucky to have insurance and private health care, it has certainly softened the blow of five years of relentless treatment. Six surgeries including two mx, a complex double reconstruction and then a liver resection, along with three different chemo regimes, 3 aromatase inhhibitors, radiotherapy, counselling, regular zometa, lymphoedema support and now I'm NED a base line of a ct scan and blood tests every three months - I've not come cheap, so I can only imagine the new insurers looking at my details with horror and thinking Jeez...how much did that lot cost?!! I've no idea as I have never added it up, but all I can say is I am pretty confident that I have got my money's worth! Although obviously I'm hoping for a long run with no further treatment. Fingers crossed.

    Anyway, I think the world of my onc, and he's on my side and that's the main thing!

    Boo :-)

  • jessica21122
    jessica21122 Member Posts: 6
    edited February 2016

    I found out in December that my cancer is not progressing right now. The spots that were there are now just lesions that are not lighting up. I went for my visit with dr yesterday and it showed cancer markers went down more. I have been doing monthly Lupron Shot and Xgeva, I also take Ibrance, 21 days on and 7 days off. Side effects are minimal.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2016

    I'm happy for your good results, jessica! You must be on an anti-estrogen like letrozole or faslodex as well?

  • jessica21122
    jessica21122 Member Posts: 6
    edited February 2016

    ShetlandPony


    Thank you!

    I forgot to add that I take the Femara (letrozole) daily as well. Sometimes I take so many I forget. I was on Tamoxifin after I finished with the last treatment for the inflammatory Breast Cancer, once the cancer came back this way they put me on the Femara.

  • Boo123
    Boo123 Member Posts: 119
    edited February 2016

    Jessica that is awesome, the best news ever for you, I hope that your markers continue to go down. Love Boo.

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