Stage IV NED crew : let's support each other

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  • Boo123
    Boo123 Member Posts: 182
    edited April 2015

    Well, yesterday I walked about 8 miles and about 5 today...trying hard to get exercise as part of my day...along with eating a healthy into-cancer diet a far as possible. `Doing my best to keep an optimum internal environment, strong immune system to try and reduce any chance of a random ITC kicking off.


    Jen, your story is awesome. What supplements are you taking? Does your onc support you?

    Welcome Marsha, sounds like you have had a tough time getting to NED, I hope things stay stable and NED for you.

    Boo


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  • hydeskate
    hydeskate Member Posts: 297
    edited April 2015

    Upside I have been riding the NED train for something like 6ish years, dx out of the gate at 29 with Stage IV in 2008 TNBC mets to lungs, liver and lymp nodes. First NED scan was the first of 2009, my last chemo treatment was in Oct 2009. I get to take the dreaded trip every 3 months, 4 hour round trip to the middle of the state to the Cancer Hospital.

    Downside: We thought it was back in Fall 2010 but every scan said no, by the summer they figured out it was my immune system attacking my body, got sent to Rheumatology and dx with Sjogren's Syndrome an autoimmune disorder which is attacking my body particularly my eyes and mouth, and beyond extreme fatigue. Just recently started taking an older chemo drug in very low dose called Methotrexate to knock back the immune system a few notches, an antibiotic for my eyes, Plaquenil (funny enough its a drug for Malaria), and a crap load of others racks up to 20+ pills a day and 36 pills on Wednesday. The doctors think somehow the Sjogren's is keeping the cancer in check, all I know is it is kicking my ass.

    Anxiety in full swing new pains question is which one is causing it Cancer or Sjogren's? I have my next appt in 3 weeks, anxiety not good cause all it does is make the Sjogren's go crazy. That and due to the Sjogrenj's it takes me 3 weeks to recover from the trip to the Cancer hospital...

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  • Teakie88
    Teakie88 Member Posts: 226
    edited April 2015

    hydeskate: FANTASTIC news about your NED status for so many years! Let's hope that you continue down NED road for many more to come! Congratulations! Ann

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  • Boo123
    Boo123 Member Posts: 182
    edited April 2015

    Hi Hydeskte, I echo Teakie, fantastic to hear of NED of 6 years after your mets were found. Astonishing to hear of this new syndrome, sjogrens, it sounds very wearing to have to deal with, but if it truly is helping keep mets away that must be a comfort. I hope you continue to stay NED and find a way to live a happy life in spite of what sounds like a very debilitating condition. Boo.

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

    Hydeskate, sorry to hear sjogren's is kicking your ass. Have you tried acupuncture? I know someone for whom it helps relieve pain and other symptoms.

    Boo, I started exercising daily the day I started chemo. It has helped me in so many ways, and continues to help years later. In August it will be 8 years since my diagnosis of stage iv at the get-go. I've been NED about 7 years.


     

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  • Teakie88
    Teakie88 Member Posts: 226
    edited April 2015

    Heidihill: Absolutely fantastic news! I am so happy for you! To many more years of NED for you! Ann

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  • Boo123
    Boo123 Member Posts: 182
    edited April 2015

    Heidi: 8 years! Wow! Way to go! Boo


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  • Janice54
    Janice54 Member Posts: 83
    edited May 2018

    I was DX in 2006 with mets to my bones. Took tamoxifen and six months later I was NED. Never had chemo, surgery or radiation. Four years ago I developed a met in my liver. Switched meds to femera and a year later added in Ibrance. I am 12 years out and going strong.

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

    Janice, I absolutely love your story of meeting NED again!

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2015

    Congratulations to you all for your NED status. This is so inspiring. Thank you for sharing!

    The Mods

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  • screech
    screech Member Posts: 212
    edited April 2015

    yay Heidi and Janice! You two set a good example!

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  • Boo123
    Boo123 Member Posts: 182
    edited May 2015

    Well, Janice, that is wonderful to hear. It gives me heart as I am now on Femara and keeping my fingers crossed.

    How I wish there was a "like" button on this website!

    Boo


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  • intothewoods
    intothewoods Member Posts: 449
    edited May 2015

    I consider myself "NED like" since I have just one bone met and feel pretty good. I agree with Marsha! It may sound crazy, but I like myself better as a metastatic breast cancer patient. I'm less judgmental of and kinder to myself, which allows me to approach others the same way. I am more interested in listening to others, take more risks and where I was once a bit of a political junkie, I couldn't care less about politics now. My yoga practice is stronger and I go to sleep every night reviewing all I am grateful for. Things like having clean water to drink, living in a safe place without threat of violence, a satisfying relationship, friends, a very well paying job etc.

    All that said I think this is a great thread because MBC is always on my mind.

    Be well

    Lisa

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  • Boo123
    Boo123 Member Posts: 182
    edited May 2015

    Hi Lisa, I do agree with you - despite the trauma of diagnosis and the impact of treatments, I have found a new me in the MBC world. I'd like to think that I am a better person, but I must also admit to at times being a more irritable person. I certainly have less time for things that do not interest me, and more attention to the people that I care for and that care for me. And like you, MBC is always on my mind. It's a funny old business.

    Boo.

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  • screech
    screech Member Posts: 212
    edited May 2015


    Just had a wandering thought....how common/uncommon is it for someone to get to NED?  Does getting to NED indicate the possibility of a longer survival (oligo, etc)?  Hope everyone is having a great day and that more get to NED and that all of us stay there.

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


    That is where I'm lacking...I need to get up and get moving. There's only so much weight I can blame on chemo, right? LOL

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  • Boo123
    Boo123 Member Posts: 182
    edited May 2015

    Interesting question, screech. Who knows? Not as many as we would like to get to NED, as that would be all of us in a perfect world. But then, in a perfect world, `BC would not exist to start with.

    Boo

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

    Great thread.   DX Stage 3B with IBC in Sept 2011.  DX with met to adrenal gland in August 2013.  Began a treatment routine of Herceptin every 3 weeks and tykerb pills each evening.  NED since Oct 2013.  I hear everyone re: anxiety (next one in June)   Minimal SE's  fatigue is the most difficult.  I work, raise my teen and young adult and spend time with friends.  Overall a very good life and I am grateful to be here and doing so well. 

    I try to savor the good, the bad and the ugly days. Even the difficult days with my kids are good days, memories I am here to make!  Laughter, laughter and joy

    May we all be well for a long time

    Nel

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

    screech,

    I'm not sure that there are any stats that tell us how common or uncommon NED is. NED really should be NEAD, no evidence of active disease, because for 98% of us that will change at some point. Oligomets simply means no more than 3-5 (even that's up for debate) to a single site/organ and I don't know if any studies have looked at a correlation between that and NED. Sorry I've given you more to question rather than any answers.

    Caryn

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  • screech
    screech Member Posts: 212
    edited May 2015

    Thanks Caryn. Like you, I had one met. It was not biopsied due to location so the call it unconfirmed. It did have a complete response to chemo though so a little different than how they treated your spot. I guess I am just looking for hope. But I am still working, planning vacations, etc. Still leading a great life.

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  • Boo123
    Boo123 Member Posts: 182
    edited May 2015

    Next check up CT scan in two weeks...already beginning to feel a bit nervous, am an AMBCP (anxious metastatic breast cancer patient). TMs went up slightly at last blood test. Still, my onc seems to think TMs do not really reflect what is going on with me. Stupid cancer.

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  • intothewoods
    intothewoods Member Posts: 449
    edited May 2015

    Hi Boo,

    My tumor markers did not align with what was going on with me. Markers were always good but I had developed metastatic disease. I think this is not uncommon. We don't even check them anymore and I'm fine with that.

    Take good care

    Lisa

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  • Boo123
    Boo123 Member Posts: 182
    edited May 2015

    Hi Lisa, thanks for the support. I think that tumour markers do not help read this disease for lots of women. Sigh. Am hoping the uncomfortable feelings I am having in my liver region are indigestion. Or psychosomatic pain caused by knowing my scan date is rolling up soon. Stupid cancer.

    Boo.

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  • screech
    screech Member Posts: 212
    edited May 2015


    Before my scan I had all kinds of pain-then suddenly it went away when I got the NED declaration.  I have another coming in June and I'm already starting to wonder about this ache or that ache.  I'm with you Boo!  Stupid Cancer!

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  • intothewoods
    intothewoods Member Posts: 449
    edited May 2015

    I had a groin pain this morning and went there. Stupid cancer is right.

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  • Smellimd82
    Smellimd82 Member Posts: 18
    edited May 2015


    Hello, all. I too will cautiously join your club. I was dx with bone mets to pelvis, sacrum, femur, and both iliac crests in November of last year. I had my first scan last month which showed zero hypermetabolic activity on the PET scan. I remain on Faslodex shots and Xgeva monthly and hope to get a long ride out of both. I'm back to work full time and trying to take each day as it comes. I have taken a trip to Jamaica to celebrate my current status and my 33rd birthday. Best to all of you.

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

    My tumor markers remain low, even tho I had metastatic disease, so my onc does not use them with me.  Who knows!  My next scan in June as well   On vacation next week, so going to relax and save the stress for next month!

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  • Boo123
    Boo123 Member Posts: 182
    edited May 2015

    Smells, welcome - no one wants to be on the stage IV forum, but hopefully you'll find a bit of support oaths thread, and congratulations on reaching NED status - long may this continue for you.

    Neil, sorry your stupid cancer toms are as useless as mine. Hope you have a great vacation somewhere lovely!

    Boo


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  • Lauriesh
    Lauriesh Member Posts: 692
    edited May 2015


    steelrose, I see you had asked about seeing a psychologist. I think it has helped a lot eventhough she can't fully understand our situation.

    she gives me suggestions of how to cope. For example, I told her how I would sit in our family room and look at the wall of photos that I had of my wedding, kids when they were young, etc and just start crying, as I would be so upset and just want my life to go back to what it was before I had cancer.

    she told me that I should take them down and put up new photos of happy times that I have had since I was diagnosed stage 4. I did that about a year ago and it has helped me a lot. It was something so simple, but I don't think I would have thought of that on my own.

    It is just important that you find one that you connect with. Keep trying different ones until you find a good one.

    congrats to all the new ned that have joined our thread. May we all be on this thread for many more years!

    Laurie

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

    What a great way to celebrate, Smell. Have a great vacation, Nel!

    I'm happy to hear of all the NEDs. This small, retrospective Japanese study is for oligomets, but it probably applies in some degree to those who get to NED (oligo or not) as the study included those with induced NED after partial response to chemo.

    http://www.ncbi.nlm.nih.gov/pubmed/22532161

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