Now a 17 year survivor of Stage 4 MBC de novo!!!

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Denny123
Denny123 Member Posts: 1,886
edited February 2020 in Just Diagnosed With a Recurrence or Metastasis

December 16 was the beginning of my 17th year!  I have been on chemo for 16 3/4 years, currently NED, and on Herceptin and Xeloda for maintenance.

Original liver mets, then 8 years ago I presented with chest node mets.  I was on Kadcyla for 4 years, but am unable to add that to my treatment history shown below.

Denise

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  • grainne
    grainne Member Posts: 245
    edited December 2018

    How fantastic it is for all of us to hear that! Congratulations.

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  • dorimak
    dorimak Member Posts: 147
    edited December 2018

    Thank you for sharing.That is awesome not just for you but for the rest of us! Have a blessed Christmas and here’s to many more years of health and happiness.

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  • ksusan
    ksusan Member Posts: 4,505
    edited December 2018

    Congrats!

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  • Erkipper
    Erkipper Member Posts: 31
    edited January 2019

    Hi there Congratulation!!!! I was just diagnosed with a recurrence and saw your post that you were on Kadcyla, then you wrote " was on Kadcyla for 4 years, but that doesn't seem to be an option for my tx" What does that mean? They just started my on Kadcyla. Thanks for any info

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2019

    I was on Kadcyla until it stopped working.  There is no set time.  Good luck!

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  • MichelleAnn
    MichelleAnn Member Posts: 1
    edited January 2019

    Congratulations, that made my heart smile.

    I was just diagnosed with breast mets on dec 31 2018, after being diagnosed with BC Jan 2018...

    had 1/7 brain tumors removed with surgery on jan 7 and will begin radiation to remove the other 6 squatters at the month.

    My husband and I have four wonderful children (13, 9, 7 and 4) I am determined to not have this ruin the plans I have to be around for them.

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2019

    Denny123, thank you for posting this!

    We welcome you warmly Erkipper and MichelleAnn. We are sorry you had to join, but glad you found us.

    Sending you All gentle hugs

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  • illimae
    illimae Member Posts: 5,710
    edited January 2019

    Yay! I love these posts, congrats!🎉

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2019

    Congrats! At 6 1/2 years in with de novo liver mets, this makes me smile & have hope!

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  • dorimak
    dorimak Member Posts: 147
    edited January 2019

    congratulations Denny123 on such a significant milestone! May you continue to celebrate for decades.

    MichelleAnn are you having whole brain radiation or stereotactic treatment of the remaining spots

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  • nowaldron
    nowaldron Member Posts: 94
    edited January 2019

    Wow, that is great! I am so happy for you. I am coming up on three years and have heard of women living for a long time with HER2+ on Herceptin. That is just such great news. I am wishing you another 17 years or more! 

    Best,

    Nancy

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  • gailmary
    gailmary Member Posts: 332
    edited January 2019

    congratulations Denise. That is great for you and so encouraging for the rest of us.

    I am a little confused tho. You have been on chemo for almost 17 yrs? Do you mean always a chemo through an IV? Or even referring to the faslodex you were on as a chemo? Any of the others just a chemo pill? Ive been fortunate in that i havent had IV chemo yet. My dr left me thinking once i have IV chemo the hormonal therapy wouldnt help anymore

    Some of what I'm reading here makes me think that chemo can "reset" the cancer to respond again to previously used drugs. Since I am not there yet dr thinks its a waste of breath discussing it cause I "may never need it". But understanding it all is very helpful.

    Thanks

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  • Kanga_Roo
    Kanga_Roo Member Posts: 333
    edited January 2019

    So thrilled you are sharing your amazing milestone with us Denny! These happy posts keep us all going and give us hope for a brighter future!

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2019

    MichelleAnn-Many prayers for you!

    Gailmary- All of my chemo has been IV and I also refer to Herceptin IV as a chemo which kept me in my first remission for 6 years.  I am now on Xeloda pills but also the Herceptin IV.

    When I was on Faslodex, I was also on Herceptin and later Kadcyla.  Unfortunately, I am unable to indicate Kadcyla IV in my treatments and was on that for almost 4 years.

    The Femara that you are on may very well be enough for you, thanks to the newer treatments.  I am way past that ability.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2019

    Erkipper--I changed my original post.  In my treatment history seen below, I can't type in Kadcyla to show that I had it.

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  • casax
    casax Member Posts: 3
    edited February 2019

    Hi Denny, It is so great to know your story. It's very encouraging!

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  • momdoc3
    momdoc3 Member Posts: 2
    edited November 2019

    you are a warrior and an inspiration!! Would you please share any tips to your long survival? I was diagnosed in 2015 and just recently diagnosed MBC in October. Any words or encouragement would be great. Wishing you continued success

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  • Denny123
    Denny123 Member Posts: 1,886
    edited November 2019

    Momdoc3-- In a month, on Dec 16, that will be the beginning of my 18th year of being a survivor! I am still on Xeloda and Heceptin...22 months now and still NED. I have another CT scan in 3 days, though.

    I don't drink alcohol, even though a lot of ladies say that it is okay. But the stats show that it is not good for us. I don't take any stupid supplemental "miracle cures" that are touted. I am horrified that women actually believe that dog ringworm medicine can cure BC! I take only the vitamins and normal supplements that have been approved by my specialty pharmacist.

    I have a semi-healthy diet since, in all of these years, I have found that our diets can't really cure us either. Chemo is what we need. Sugar does NOT feed cancer, but we can have it in moderation.

    I have no idea why I am still here, and my doctors don't either. Faith and chemo, I guess.

    Good luck! What kind of chemos will you be on?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2019

    Thank you for sharing with us, I love hearing from the long term survivors and hoping to be as fortunate myself. Much love and continued success with your treament!

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  • Denny123
    Denny123 Member Posts: 1,886
    edited November 2019

    Olma61...thanks! on Dec 16, I will start a new thread for the 18th year! Woo hoo!

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  • Imagine
    Imagine Member Posts: 165
    edited November 2019

    Wow 18 years, this is so encouraging to see!!!!I am 12 years out from early stage and now am facing MBC. Lung and chest areas. I am on the COC protocol and my MO said it won’t hurt so I thought i would try to see if it helps.

    I believe that Chemo and the treatments they have are our best bets. Not sure about the COC, but am taking Vit D and Turmeric supplements and baby aspirin. I believe my diet is good mostly vegetables and fruits, Whole grains, once in awhile fish and some chicken. Not had surgery for biopsy yet as they are doing a Pet Scan next week to see if it is in a easier place to biopsy, if not scheduled 6Dec for wedge section to get to the nodes in lung.

    I seem to cry a lot and still am in disbelief about all of this..


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  • Denny123
    Denny123 Member Posts: 1,886
    edited November 2019

    Please check with your specialty pharmacist to make sure that the Turmeric is okay. I have always heard that it negates the efficacy of chemos.

    I was taking it before my dx, but quit when I read all of the research articles.

    My onc won't allow me to take baby aspirin, either.

    In 2004, my liver was so full of large tumors that I only had about a year to live, but a clinical trial of Gemzar (which was new then) and Herceptin cleared out my liver in only 9 months.

    So all I have to do is remember how scared I was back then.


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  • dlittkemann
    dlittkemann Member Posts: 234
    edited January 2020

    so needed hear that. Thank you.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2020

    Thanks! This is an old thread. I just posted that I am now an 18 year survivor! Still NED and on Xeloda and Herceptin

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  • ajminn3
    ajminn3 Member Posts: 327
    edited January 2020

    I really needed to see this post. I just was diagnosed triple positive this afternoon (stage 2). It’s inspiring to see positive results from others who have walked this path. I’m inspired by your strength and courage. It makes me feel so hopeful in a dark time

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2020

    Stage 2 is great!

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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2020

    Thanks for the awesome update!

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  • HopeandGratitude
    HopeandGratitude Member Posts: 524
    edited February 2020

    Thank you for sharing your story, celebrating this milestone, and offering words of encouragement. Of course we won't all get there, but we will try and continue with our meds and prayers and hopes and liv our lives the best we can despite this crazy disease. I was diagnosed with Stage IV MBC one year ago (after 16 years of being cancer free, followed by loco-regional recurrence which hung on to become mbc) with liver mets, have had great response on Verzenio, but live in a bit of fear that the other shoe will drop. Trying to stay in the present, keep a watchful eye, and be prepared with next plan of attack. I know my days are "numbered" as they are for everyone, but I pray I can watch these milestones come and go as well. Just don't feel it's quite my time to pack it in yet.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited February 2020

    Good Luck Hope! Actually, this is an old thread. I started a new one in Dec saying that I am now an 18 year survivor! NED so far for 2 years. But getting a CT scan tomorrow...Ugh.

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