Anyone else with Stage IV and in Remission?

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  • hydeskate
    hydeskate Member Posts: 297
    edited October 2012

    I was dx in 2008 with TNBC Stage IV out of the gate with liver and lungs mets.  After a round with Abraxane (took 1 extra dose) and AC I got my first NED Scan which allowed me to have the BMX, then Rads.  I was still NED but the doctors decided to put me on Abrxane again for the hell of it, scans were still coming back NED.  Oct 2009 was the last time I had Chemo, currently I get scanned every 3 months, and now concentrating on keeping my autoimune disorder Sjoren's Syndrome under control.  They think the Sjogren's is keeping the cancer in check

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  • Lauriesh
    Lauriesh Member Posts: 692
    edited October 2012

    I am also Ned. I have been since feb, 2011. I had liver mets. I did taxotere and herceptin, then had Rfa. I am currently on herceptin and tykerb.







    Laurie

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  • kingcour
    kingcour Member Posts: 93
    edited October 2012

    I was diagnosed April 2012, stage IV from the diagnosis, 37 years old, with four kids (one born Feb 14, 2012). I had mets to bone and liver. All bone mets are gone, one tiny inactive liver met left, and my primary tumor is down to 1 cm and inactive as well. God is still in the miracle business! My onc says I am in remission, but it will be complete remission when that last pesky liver met us gone. Having another scan Nov 12. I am so amazed that God worked this miracle in only 4.5 months! My liver had multiple mets and the biggest was 5cm+! I am fighting and praying hard because I have so much to live for! We all do! Each day is a gift! Live in thankfulness!

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  • Cafelovr
    Cafelovr Member Posts: 1,534
    edited October 2012

    I have been NED for 2+ years. Getting scanned later this month!

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  • nicole0714
    nicole0714 Member Posts: 48
    edited October 2012

    LOVE this thread. We need to hear more success stories. Women ARE living longer with stage 4 BC. My onc won't even talk about stages because she said BC has changed (and continues ti change) so much.

    Try to have faith and optimism with your NED news. There are women our there with 10+ years of it. Focus in them! New drugs are coming out all the time!

    I hope to be NED soon as my liver mets (I had diffuse mets that was spreading fast!), is metabolically inactive after two treatments with taxotere, herceptin, and perjeta, and the lymph nodes are decreasing as well. Last PET was yesterday after four treatments. I'm planning on being here for my husband and four young sons for the long haul, and being an inspiration to others!

    You all certainly are an inspiration to me!!!

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  • aic
    aic Member Posts: 417
    edited October 2012

    God is still in the miracle business, kingcour! Your story brought a much needed smile to my face.

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  • aic
    aic Member Posts: 417
    edited October 2012

    Nicole, I am hoping to have the same success as you with that very same tx!

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  • nicole0714
    nicole0714 Member Posts: 48
    edited October 2012

    Kingcour,

    You're absolutely right! God has healed you and hears your prayers! Enjoy your new life with your beautiful family. You have MANY happy years ahead of you! We all have a unique perspective on life after this diagnosis. One of the good things to come out of this!



    Aic,

    This regimen seems to be working! Wishing you all the best, and a quick road to NED if you're not already there!

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  • raccoony
    raccoony Member Posts: 72
    edited October 2012

    Nicole0714, my mother is doing the same treatment and in a very similar situation as yours as far as where her metastases has occurred and how her liver has decided it wants to be a leopard ... she has also done 2 treatments going on her third. Her doctor hasn't done scans real recently but he said he thinks she is responding. Now if we can only convince her to quit smoking and drinking ...

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  • rosie06ct
    rosie06ct Member Posts: 220
    edited October 2012

    I got my results .... NO BRAIN METS !! Thank the LOrd ! it was even scarrier than my original diagnosis...    so the doc said I am technically not still in remission as my lymph nodes are borderline active (but that means my left side which was clear is now invollved also ) ...

    but no mets to bones organs or brain.. will continue on current treatment and will re scan in january or sooner if the tumor markers go  up...  

    For now I feel like I dodged a big bullet ...

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited October 2012

    Yay Rosie!!!   I am exhaling a huge sigh of relief for you too!!  Scary stuff.   I had a brain MRI about two years ago right at Christmas because I was having a very fuzzy feeling in my head.  My onc was all over it because 1/3 of HER+ will progress to brain mets.   Turns out it was a compacted sinus ... never ever would I imagine being so overjoyed about a compacted sinus cavity.    Hope you celebrate your good news this weekend.   

    Jennifer

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  • Jill49
    Jill49 Member Posts: 494
    edited October 2012

    Congratulations!  NED is GOOD.  I hope it lasts for a long time.  I have been stable on Xeloda for for two years  Last scan had lung mets undetectable and no new bone mets.

    What's the difference between NED and stable?  My onc says that bone mets, even when they are no longer active, still appear on the scans as scar tissue. 

    At least, I think that's what he said.  My chemo brain doesn't hold information like it used to!

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  • aic
    aic Member Posts: 417
    edited October 2012

    Yay Rosie!

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  • Lauriesh
    Lauriesh Member Posts: 692
    edited October 2012

    Ned is no evidence of disease. So scans show no signs of cancer. Stable is when cancer is present on scans but it is not growing.

    I don't have bone mets, but I think what your onc said is not always true as I know some women with bone mets who are Ned, including the woman who started this thread.





    Laurie

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  • soleil505
    soleil505 Member Posts: 1,790
    edited October 2012

    Happy News, Rosie!

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  • tlangston07
    tlangston07 Member Posts: 354
    edited October 2012

    I love these stories. Thank you so much for sharing them.

    Rosie..Fantastic news!

    Terry

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  • Iwillwinthisbattle
    Iwillwinthisbattle Member Posts: 1,076
    edited October 2012

    Here's to many, many more NED results! My next scan is 11/2 and I'm already getting nervous!

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  • rosie06ct
    rosie06ct Member Posts: 220
    edited October 2012

    I just read the report and there was no evidence of disease only noted was the lymph node on left side was 4.5 and normal is like 1.9 or something. but 4 days before in that arm i had my xgeva shot and also flu shot and in other arn had pneumonia shot... when i went to see my onc tuesday she said she could feel the nodes had gone down ..;)   she said she doesnt quite know what to call me at this point ... we will watch closely

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  • BouncingBetties
    BouncingBetties Member Posts: 379
    edited October 2012

    Iwillwin...here's to you being the next metsister to post your scan results as being great news ; ) If I could get here, and all of these other ladies could, there is no reason you won't be next. Seeing Rosie's news and reading so many of the same positive posts gives me even more hope.

    Thank you to Soleil. My Chemo-Monkey has been a bit neglected since my chemo finished in January but I think if I'm going to be having Lumpy removed shortly, I might take her for my surgery. Maybe I'll replace her little cold cap with a little bit of yarn hair for the occasion.

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  • rosie06ct
    rosie06ct Member Posts: 220
    edited October 2012

    I am tired of this cancer awareness crap !!! How about they actually get the cure out there !! It is almost like a big business and they make more by cancer than curing it !!!     I am very greatful for this website to give us all hope by each of us sharing and caring for one another.... IT DOES MAKE A DIFFERENCE !!!

    ladies I think it is all up to us to keep pushing ourselves to think positive and keep living instead of dwelling on our disease... it is ok to have crappy days or a good ole cry but then pick yourself up and continue !!!    LOVE TO ALL !!

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  • kingcour
    kingcour Member Posts: 93
    edited October 2012

    Rosie- I have thought the same thing. Cancer is a very big business. It is sad that already so many children have had to live without a mom when a cure has to be so close. I just don't understand. I want to do something to really fight for our cause, but I don't know where to start. I am sick of all of the pink stuff though. The truth is, we are all here and are desperately fighting to raise our babies and live our lives! How can people be so greedy?

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  • mokenagirl
    mokenagirl Member Posts: 24
    edited October 2012

    Hi-

    I am so happy about this thread. I am inconclusive on liver mets.

    Before I started treatment,(chemo first to shrink tumor) an MRI showed "something on my liver" after treatment, it was gone. Three doctors are scratching their heads, and calling it inconclusive. At one point I wasn't even going to have surgery or rads. However, my onco fought for me for both procdures, and I have been cancer free since Sept 2010 Laughing. I love my onco.

    I get a scan every 4 months. Last scan I started crying as soon as I woke up, on the way to the scan, sitting in the waiting room, and durning the scan. It is a horrible experience, and they want you to remain calm. Girl, please.

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  • nicole0714
    nicole0714 Member Posts: 48
    edited October 2012

    So happy for you, mokengirl!!

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  • kingcour
    kingcour Member Posts: 93
    edited October 2012

    Mokengirl- tell me more about your fight for surgery and rads. I am about to enter that fight myself!

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  • Iwillwinthisbattle
    Iwillwinthisbattle Member Posts: 1,076
    edited October 2012

    Enough with awareness, it's time for a cure!!!!!

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  • Iwillwinthisbattle
    Iwillwinthisbattle Member Posts: 1,076
    edited October 2012

    BouncingBetties----from your lips to God's ears!!!!!

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  • susan3
    susan3 Member Posts: 3,728
    edited October 2012

    congrats to you. hope you do well for a long time. we need people like you, we need all the neds, that is why the science continues. makes the docs happy and they want to do more. so yeahhhhhh you ned people, thanks for keeping the cause strong for a cure :)

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  • joanieM
    joanieM Member Posts: 29
    edited October 2012

    Hi Ladies,

    Congrats to all of you that have gone in remission! To all of those who still have to endure the pain and side effects of meds and who have had mets for years, I can only imagine how your lives have been turned upside down. My thoughts and prayers go out to you all!

    I have been fortunate to go into remission. Its been two years this month, I am so relieved. I will never forget the side effects of chemo and how I just wanted to give up, it took over my life.  I had very little support from my family, no one in my family thought it was a big deal.  When it became metastatic they realized it was serious!

    I almost feel guilty to be here telling everyone that I am in remission. But I have a question! 

    At what point should your Dr. stop checking tumor markers? When you are concerned about pain that has been going on for awhile, isnt it something your Dr. should know about?  For those who have bone mets, are you in severe pain? My Dr. told me if I had bone mets, I would have fractures! That I would be alot of pain. He is dismissing my concerns and said "My pain is in my head" He went on to say CT scan is normal, no mets, blood work is normal, therefore no need to check tumor markers.  So now if I am in pain who can I depend on if not my Onc.  I guess if there is anything going on, it will have to be in its advanced stage in order for him to be concerned. 

    Would like some feedback on those of you who have bone mets, what they feel like and do your bones fracture easily.  How long did it take for fractures to occur? Did they start out with a dull ache, or was it a horrible pain?

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  • holdontohope
    holdontohope Member Posts: 295
    edited November 2012

    Joanie, my oncologist was dismissive of me as well when I complained of pain. (I have since changed oncologists.)   I was having muscle spasms by the time I went to see him.  I had pain off and on for about a month and just believed I had a pulled muscle.  But it got so bad one day I had to do something.

    He thought it was nothing and said mets don't present that way.  But thankfully he also checked my tumor markers.  Called me the next day and said I needed a bone scan and CT scan, which showed extensive bone mets and questionable spots in liver.

    All this to say that your Dr. is wrong to say that if you had bone mets, you would have fractures.  I waited too long to get checked and did end up with a collapsed vertabrae.  But, my mets were so extensive, they had to have been growing for quite awhile and I was not experiencing pain until the vertabrae collapsed.  Checking tumor markers is such a simple test, I don't know why some doctors are so reluctant about it.  Also, any doctor that told me that my pain was in my head would never see me again.

    But I do want to ask about the CT scan you had.  Was that very recently or has it been awhile?  I would think if it was recent that bone mets would have shown up if you had them.  Also, tumor markers are often unreliable.   But I believe that our drs. should listen to us when we have a concern and try to figure out what is going on.  You need to keep talking to him until you get some answers.

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  • sparklysue
    sparklysue Member Posts: 68
    edited November 2012

    Joanie



    Before I was diagnosed with BC with bone mets, my symptoms were a severe bad back and thigh pain - so bad I ended up on crutches. And still my Dr said it was just a pulled muscle and refused to investigate - this went on for over a year.



    Hence on diagnosis I was Stage IV - however no point in looking back at what can't be changed. I have extensive bone mets, which I am on quite a bit of medication for and currently going through 1st chemo.



    I think your Dr is wrong to say you would def have fractures/severe pain - from what I've read and experienced this is not always the case. I get a niggling ache in my ribs which is I assume is from rib mets, also same in hip.



    But having said that - we all have niggles and aches which are simply that - nothing sinister at all, so try not to worry too much. On same note though - no Dr should dismiss your concerns - I certainly wouldn't be fobbed off again if I had a worry. So don't take no for an answer if you are worried.



    Can I just say that I am fairly new to these boards but have already got so much inspiration and help from everyone. It's so uplifting to know that everyone of you actually "knows" what I am feeling - I already feel so very much less isolated.



    So thanks to everyone



    Sue

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