Anyone else with Stage IV and in Remission?

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ThePowerOfPink
ThePowerOfPink Member Posts: 22
edited February 2018 in Stage IV/Metastatic Breast Cancer ONLY

My last scans show that I am in complete remission.  My Oncologist said it is miraculous.  I was in the exam room with my Husband and Mother when we got the news.  We were all three dumbfounded. I look back now and I am a little embarrassed at our response.  We walked out and were in shock.  Happy Numb is how I would describe it. That was July 2012.

It took about a month to sink in and to begin changing my daily way of thinking.  The first feeling I was able to identify was guilt.  Why me?  I had made peace with making the absoulte most of every day and accepting that I would not be here with my family as long as I had planned and wanted to be.  But I was NOT giving up by any means and was fighting to be here as long as I could.

I was hoping for improvment to show on my scans with the new treatment I was on, but NEVER is a million years expected to hear that there were no signs of any active cancer in my liver, lungs or bones (it was in my bones from my skull to my knees) anymore.

It has been 3 months now and I was cruising along with the new plan. (I will continue my treatment as is and rescan in 6 months - My Oncologist doesn't want to change anything at this time.)  I had figured out how to live life on treatment with this new happy happy news and even managed to not think about reoccurrence. Believe it or not - ha ha  Then Friday I called to schedule my annual PAP since I am due in December for this.  The nurse called me back to confirm that I could schedule my appointment while on this chemo and not worry about it effecting the PAP test results.  The nurse left a very sweet voice mail about this and how they are there for me and that they would schedule an appointment in the morning so I would not have to be in the waiting are for a long time.  Then as she was hanging up the phone I heard her speaking with a coworker.  She said, "Wow! Stage IV breast cancer. How sad. I mean what do you do?"  Of course I had to replay it to make sure I heard it right.  Yes I did and now all of a sudden I am sucked back in to this doomsday sadness and worry again like back in 2008.  Reading and searching for others in a similar situation and wanting to be encouraged by other success stories.  I fear this will consume my thoughts again.

Anyone else out there in a similar situation?

 A little history:

Nov 2008 diagnosed with Stage I Grade 3 IDC

Sep 2009 NED

Nov 2011 diagnosed with Stage IV (in liver, lungs and bones) E+, P+ Her2+

Jul 2012 complete remission

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Comments

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited October 2012

    I haven't hit NED yet but many woman have and have stayed that way for years.  Don't let that woman's comment get to you - she was just looking at your chart.  She was treating you as a statistic but we are all individuals.  I think the news from the latest conference on metastatic breast cancer said about 5% can actually be cured outright!  Maybe you are in that category - why not?

    Good luck for your continued remission and I hope you get a good, long life out of it.  One thing I know - worrying does nothing to make your days better.  Remember this quote:  "Worry never robs tomorrow of its sorrow, it only saps today of its joy."  ~Leo Buscaglia 

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  • kayrnic
    kayrnic Member Posts: 1,708
    edited October 2012

    I also am not NED, but so far, I only have one met on my L2 vertabrae. I have experienced people talking to me and about me as if I am going to die any second. It just speaks to the fact that stage IV is so misunderstood. People do not realize that some women can live a decade or longer with the disease. You just have to try and not let it get to you. I know it is hard, but Ann is right.....if you don't enjoy these NED days while they're here, you may regret it later! I wish you a lifetime of NED! Stories like yours need to be told more often because they give all of us what we need the most....HOPE!

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  • bmaybee67
    bmaybee67 Member Posts: 56
    edited October 2012

    I hope you and NED have a LONG affair!  I have been NED for about 3 years and have had many of the feeling you have.  I was stage IV from the get go (Aug 2007) with only one met to the sternum.  I have had a hard time finding my new place in the world.  I dont feel really sick most of the time, but I am not the same as I was before cancer.   I am trying to enjoy each day because we just neve know.  I could be lucky and be NED for 20 years or it can come back.

    Good luck, Barbie

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  • ThePowerOfPink
    ThePowerOfPink Member Posts: 22
    edited October 2012

    Ann, thank you very much for reminding me. Sometimes that worry just sneaks up on us.

    Kay, HOPE is what we all need. Thank you for reminding me of the potential regrets.  That is not what I want at all.

    Barbie, I love to hear that you have been NED for 3 years! More hope :)  I should have joined this group in 2008 instead of trying to do this without everyone here that can relate to everything we are going through. I too am having a hard time finding my place.  I have the hardest time with the joint pain.  Just walking is a struggle and frusterating.  I am better after about five steps but move like a 100 year old lady to get me started.  My fatigue is a challenge but I just sleep when my body says sleep.  I started to get SSD income in January which has helped me mentally a great deal.  That was a difficult phone call when they called to tell me that because of my "terminal" disease I have been approved to receive benefits.  But, I am so very glad it is there because I am a new wife since last February and before that I was a single mother for 9 years and so used to taking care of myself.  I don't want to sound petty at all. It just helps to be able to contribute financially.  I hope everyone knows about the quick approval process for Stage IV breast cancer patients.

    hugs,

    sherri

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

    Sherri

     I was diagnosed Stage IV right from the start with mets to my liver (4 tumors), ribs, hip, chest nodes.    I did 6 cycles of Taxotere, Carbo, and Herceptin.  After 3 cycles, they scanned me and I was NED.  That was June 2008 and I am still NED.   I finished my chemo.  Did a year of Tykerb and Herceptin and have been on herceptin ever since.  I also take Tamoxifen.   I am due for annual scans in November but as of last November, I was still NED.    don't let anyone drag you down.    Wishing many many years of NED for you too!!

    Jennifer

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  • bhd1
    bhd1 Member Posts: 3,874
    edited October 2012

    enjoy your time w ned

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  • ThePowerOfPink
    ThePowerOfPink Member Posts: 22
    edited October 2012

    Thank you very much Barb. Smile I feel better already just being here with everyone.  I was just enjoying a cup of coffee with my husband and telling him how I should have come online here in 2008.  My family is and has been wonderful but it really makes a differnece being here with all of you.

    hugs,

    sherri

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited October 2012

    I hope you hang around and inspire us all with your disease-free state!  We love the happy stories!

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  • Surly
    Surly Member Posts: 357
    edited October 2012

    Sherri, thanks so much for posting your story. Congratulations! I hope you stay NED forever. I can't imagine how one would shift her thinking and reconsider the future. But your story does give me hope. Thanks again for bothering to visit. Take care! 

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  • BouncingBetties
    BouncingBetties Member Posts: 379
    edited October 2012

    Like many of the ladies here, I was stage IV from the start. Cancer in my breast, liver, bones and lungs. I had 6 months of weekly Taxol, and have been on Tamo since January 2012. As of my last onc appointment on July 17 I was in remission. I had my follow up scan on October 3 and get my results on Tuesday. I'm hoping to still be in remission.

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  • aic
    aic Member Posts: 417
    edited October 2012

    Love to hear the NED stories! Jennifer, you inspire me! Sherri, enjoy it, my dear!

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  • aic
    aic Member Posts: 417
    edited October 2012

    BouncingBetties, that is awesome...keep us posted on your scan results...thinking positive thoughts!

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  • BouncingBetties
    BouncingBetties Member Posts: 379
    edited October 2012

    As Surly has said, congratulations! I also hope you stay in remission forever. I wish that I could change my thinking and believe I may have a future but it's hard. Maybe if I can stay in remission long enough, I might be able to change my thinking? Like many of the ladies here, I was stage IV from the start. Cancer in my breast, liver, bones and lungs. I had 6 months of weekly Taxol, and have been on Tamo since January 2012. As of my last onc appointment on July 17 I was in remission. I had my follow up scan on October 3 and get my results on Tuesday. I'm hoping to still be in remission. 3 months of remission just isn't enough for me...I want more!

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  • BouncingBetties
    BouncingBetties Member Posts: 379
    edited October 2012

    Thanks! I will be sure to let everyone know. There must be a issue with my server. My first post wasn't showing when I checked? Ah, technology. Just as reliable as the human body ; )

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  • ForestDweller
    ForestDweller Member Posts: 232
    edited October 2012

    I'm currently in remission and have been since Dec. 2011 scan.  It's difficult for me to even mention this because I know the cancer can return in a heartbeat.  For me stage 4 is stage 4.  I'm currently on hormonals which is scary for me because I've failed two hormonals already and each time it returned with a vengence.  My doc is a very optimistic guy, but I know there's a reason why he sees me every month, scans me every three, and tells me there's no cure for stage 4.

    In the meantime I enjoy every day, laugh a lot, and eat desert daily.

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  • steelrose
    steelrose Member Posts: 3,798
    edited October 2012

    PowerofPink...

    You have received some excellent replies and advice! I have been in remission since Jan. 2011. I am very cautious and very aware of our Stage IV diagnosis but I will NOT waste precious time looking behind me... cancer has stripped us of enough already. Onward we go, with determination... with hope!!!!



    Love to you,



    Rose.

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  • chefmiche
    chefmiche Member Posts: 203
    edited October 2012

    Love hearing positive stories!  I have been NED since April and earlier this month was told I was in remission.  I asked, what does that mean?  Onc said you can be in remission for 3 mo or 3 years, but it will come back.  I wish I had a more optimistic onc like you do.  I have been on SSDI since April and married in May (my DH asked me at Christmas after my stage IV diagnosis, he is amazing) so I have been home trying to be the very best wife I can be and try to enjoy every moment.  I battle my mind every day thinking about cancer, but keeping busy and positive helps so much!  Every one only has today, let's make it great!

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  • ThePowerOfPink
    ThePowerOfPink Member Posts: 22
    edited October 2012

    Thank you to everyone that has responded!  I can't say enough how much of a blessing it is to have found this place and all of you women. 

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  • BouncingBetties
    BouncingBetties Member Posts: 379
    edited October 2012

    ForestDweller, I know exactly what you mean! Today my onc told me that my bone scan was clean, and my PET only lit up with my primary tumor, and that it's now only 1 cm! He said that's the only active area and we may want to consider surgery because of that. From 6 cm, bone, lung and liver mets, to just the 1 cm primary tumor and possible surgery...15 months of thinking it was just going to keep spreading and now I get great news, but I'm so afraid to believe it or hope too much. If I have what's left removed, I'll technically have acheived NED. I wished and hoped and bargained for this but didn't know if it was possible. I'm so happy, relieved and grateful, but still afraid I'll wake up and it will have been a dream.

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  • aic
    aic Member Posts: 417
    edited October 2012

    BouncingBetties,

    Great news....so happy for you! Sitting here feeling crappy after my chemo on Monday, and you made me smile!

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  • ForestDweller
    ForestDweller Member Posts: 232
    edited October 2012

    Wow, BouncingBetties, that's fantastic!!!!! 

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  • Tina2
    Tina2 Member Posts: 2,943
    edited October 2012

    I believe that I am technically in remission after just over a year on Faslodex. Although the mets in my lungs still show up, they were not seen to be metabolically active on the last PET-CT. It is strange after a year and a half of what felt like hanging by my thumbs that I might have much more time before I drop than I initially thought. I don't want to treat this gift casually, but am trying to achieve a balance between relaxing my antennae and staying alert and prepared. Tomorrow is my monthly visit to the onc and my Faslodex injection. It is the first time since I have started this Stage IV trek that I do not have a scrawled list of questions for him. There's just one: are we sticking to the previous scan schedule?

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  • chemochar
    chemochar Member Posts: 22
    edited October 2012

      HI Barbie,  i have the same diagnosis as you--you are the first one I've found with the clavicle involvement.    I had a  ct last march and it showed no signs of cancer under the collarbone.   It's good to hear that i may have more time than I had imagined. Sure hope so, i have a 6 year old beautiful grandaughter whom i would like to see grow up.

      Hang in there!

      char

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  • rosie06ct
    rosie06ct Member Posts: 220
    edited October 2012

    i have been NED since Jan 2012.. had my pet scan monday and onc called and said there is no cancer in my organs,or bones , HOWEVER my lymph nodes are enlarged on both sides , AND PET scan showed uptake in my brain... So today with the Grace of God i made it through the MRI and will get my results tomorrow.. onc said it could be nothing ...   and she said somethign about adding afinator !  my tumor markers went up 4 pots for the first timein a year ..29.6 to 33.6 but i feel thats in the normal range so why change my meds .... anyways I get the mri results tomorrow and I am soooo scared  of having brain mets ...

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  • ThePowerOfPink
    ThePowerOfPink Member Posts: 22
    edited October 2012

    oh Rosie,

    how scary. I will be thinking of you and do let us know what you find out tomorrow and how you are doing. The waiting is very very hard. There are so many amazing woman on here that will help you thru this.  One cyber hug at a time.

    I go for treatment tomorrow and I always start thinking about how my markers will show up this month. I hope you stay NED!!!!!

    big big hugs to you

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  • aic
    aic Member Posts: 417
    edited October 2012

    Praying for you Rosie....keep us posted

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited October 2012

    yea, rosie, you're in my thoughts and prayers.

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  • ThePowerOfPink
    ThePowerOfPink Member Posts: 22
    edited October 2012

    Just checking in on Rosie.  I've been thinking about you all day.  How are you? Any news?

    hugs

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited October 2012

    Sending positive thoughts to you, Rosie.

    TPOP, congrats on tying the knot this year. That had to have a good effect on your health! 

    I've been NED 4.5 years. Recently switched to Tamoxifen after 4.5 years on Femara. Have more hot flashes again and some nausea but otherwise feeling great.

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

    I love reading stories about NED, especially Bouncing Betties because of her sock monkey  :)

    Why do they call it remission and say it can return in 3 months?  That doesn't sound like remission to me.  I think remission like REMISSION!  Its gone. 

    Well, anyway, I myself am praying for stable.  Stable is a good thing too.

    POP, don't be sucked into doomsday sadness by nitwits.  There are alot of them around.  Ignore them.  Enjoy your remission, your beautiful husband and your life.  Good luck!

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