Fill Out Your Profile to share more about you. Learn more...

Any stage IV surviving 5+ years ?

1235

Comments

  • jron
    jron Member Posts: 8
    edited February 2023

    I just had 5 years in December since dx

    Multiple drug fails, esp last 2 years

    Now doing well and optimistic with enhertu

    🤞❤️

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,648
    edited February 2023

    Just went back to the first page of this thread. I was 7 years NEAD then. I'm now happy to report that I have hit the 11 1/2 year mark. How/why ? Who knows 🤷🏻

  • anotherone
    anotherone Member Posts: 541
    edited February 2023

    Brill, thank you:)

  • divinemrsm
    divinemrsm Member Posts: 5,896
    edited February 2023

    HEIDIIIIIIIII!!!!! I love *seeing* you!!!!!! Congratulations on the NED scans!


  • believe60
    believe60 Member Posts: 86
    edited February 2023

    candy678 and dghoff, thank you so much for sharing on this thread. I am 5 months into this MBC diagnosis, less than 2 years from stage 1. First scan showed only bone mets, but Dec. and Jan. scans showed ne liver lesions. I keep seeing people post about how bone Mets only is the best prognosis. So I tend to wonder if I have a shot at longer survival. Your stories are helping me through, especially on days I can’t seem to get the tears to stop. Thank you so very much. Hugs to you.


  • dghoff
    dghoff Member Posts: 235
    edited February 2023

    Believe60 - I remember all too well those early days of diagnosis and breaking down crying as I was driving to and from work when a song would hit me just the wrong way. Sending you a big hug as I know just how that feels. But then, treatment starting working its magic, and here I still am. And so I realized, maybe I actually DO need to keep contributing to my 401K because I feel pretty great and I might actually live into my 80s. I better be prepared! But in the meanwhile, I just make sure I find and appreciate beauty in every day.


  • denny10
    denny10 Member Posts: 421
    edited February 2023

    I was diagnosed with mets, 6 years after intial diagnosis, in Dec 2013 .I have been told twice to get ' my life and paperwork' in order. I am still here nearly 10 years on. I wont pretend it doesn't get harder as you age and you have to change treatment. My life has changed considerably but it it is still sweet. I try to live life like a dog; In the moment , not regretting yesterday or thinking about what I might miss out on tomorrow. live the best life you can.

  • threetree
    threetree Member Posts: 1,159
    edited February 2023

    Denny10 - So happy to hear your story and really appreciate that you posted it. It gives me some real reason to hold out and not just succumb to not infrequent feelings of, "why not just throw in the towel?"

    Congratulations on your "good fortune" (sounds ironic I know, but I"m sure you know what I mean) and your ability to be an inspiration to others.

  • luvdbyhim
    luvdbyhim Member Posts: 158
    edited February 2023

    Thank you everyone for posting! You are all inspirational!!!! I was diagnosed in Oct '22. I feel I am starting to get some footing again. Dr. Google does have alot of out dated statistic and information. I have read that bone mets have better survival rates. I have mets in liver and two small ones in my lungs. No one knows which came first chicken or the egg. I was first dx in 2006 Stage Ia, 2013 Stage IIb, 2022 Stage IV. Everyone in here is an inspiration!!! Thank you again.

  • perky2020
    perky2020 Member Posts: 72
    edited April 2023

    6ys, 4 months -

    QOL pretty good, live life fairly normally and sometimes even forget about cancer!! Qigong, hike, snow ski, kayak, garden, dinner parties, family and grandkids. I feel very grateful for each day!

    Original DX 4/2015, ER+ PR-, HER2 low, grade 2

    Dx metastatic to bones 1/2017

    5 yrs on I/F..yay great run!

    6mo afinator/Aromasin

    7mo afinator/tamoxofin

    New PET shows progression and unfortunately liver mets. Contemplating my next treatment. Likely Xeloda but I am also looking into potential trials, Elacestrant and/or Verzenio. So much out there my head is spinning. But great to have options!!

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719

    Well ….here we all are and well done Exbrnxgrl for setting this thread up. I just found it after the restructure. I’m just over 5 years now and on 5th line treatment, 3 of which worked well and 2 did nothing at all. My team are great and I work between NHS and private care in Scotland. I have a Portacath- which is not usual here, sadly, but we’re working on it! Living a decent quality of life but retired in 2020 from a very full on job. Please people keep posting here as we need the hope!

  • bigpeaches
    bigpeaches Member Posts: 238
    edited May 2023

    I just passed the 5 year mark! Bone mets and now there is a tiny little spot on my kidney but it's so small they don't seem too worried about it.

    Arimidex, Zoladex, Xgeva, Herceptin and Projeta (Perjeta?) for 5 years now with amazingly not many side effects.

    There was someone on this board who was at 19 years, can't remember who it is though.

  • dawn m
    dawn m Member Posts: 1

    I'm new to this forum. And I know I need to do my summary / signature. I was on the forums a lot in 2009 and again a few other times. I think there are LOT of long-term survivors out there thriving because some people literally walk away after initial treatment, never knowing they have mets. And, others just don't report in anywhere or follow forums. They are living their lives away from computers. I know I did.

    Originally dx'ed with bone mets in June 2009, so I'm coming up on 14 years. It's been manageable and then liver mets reared their ugly head at end of December 2022. About same time that my original oncologist also got a cancer diagnosis and is on medical leave. So, now I have new oncology team, new meds . Everolimus (Afinitor) 10mg and Exemestane (Aromasin) 25mg for 40 days now and no change yet in scan, a few more liver lesions. So, once again, I'm in that scary phase of this journey. We all want more time and more quality time. My son is now 19 instead of 4 and I'm thankful. But, still, I'm having one of those days today as my cf 27.29 was 108, having never been higher than 40 in past 15 years. I look forward to providing some support, receiving it, and sharing.

  • katedsweet1
    katedsweet1 Member Posts: 10

    Six and a half years. Still on first treatment of letrozole and Ibrance. Mets to liver, de novo.

  • positive2strong
    positive2strong Member Posts: 209

    Hi Everyone,

    I am so glad to hear of your great progress and I too need to hear that there is hope to live longer. I am 3 years in June. I am on Ibrance and faxlodex. Some days I feel I am anxious waiting to the next shoe to drop. If I keep busy I almost feel normal. If I can plan a trip, my mind is more occupied with the trip and less about Stage 4. The depression sets in and I feel no one cares if I live. So I needed to come on here and seeing many long term survivors helps. You all got me through to this point. And I’m hoping you all will keep me on a positive and hopeful journey.

  • superfoob
    superfoob Member Posts: 121

    I’ll play…

    Dx 04/2011 de novo metastatic to axillary and hilar lymph nodes and 10+ lesions in liver.

    Did the chemos, radiation, surgeries and, since 02/2012 on letrozole alone and NED.

  • positive2strong
    positive2strong Member Posts: 209

    I am trying to get used to the new construction of the b/c.org I like the old one. So happy so many are living longer, keep writing me it gives me hope

  • handmaidofthelord
    handmaidofthelord Member Posts: 10

    I just wanted to thank you for taking the time to tell us your story here. I stay off the forums for the most part to avoid triggering my anxieties, but I come on every now and then for reassuring survival stories.

    I was diagnosed in 2021 while pregnant (first trimester) with my second child. Her2+, hormone neg. I got some chemo while pregnant but no targeted therapy due to the baby. Stage III was reclassed as Stage IV when they did my scans post-delivery, and found the bone and liver mets.

    All my treatment have worked so far (currently just on Herceptin/Perjeta now) in keeping me stable (my liver mets are gone and bone mets are unchanged), and I am generally healthy and well, but I constantly worry about how long it would last. My sons are about to turn 4 and 2 next month, but obviously I would like many more years with them before I deteriorate.

    I am so grateful to hear it is possible to go 10-15 without progress, just like you. So truly, thank you for sharing and I pray the treatments for your recent progression go well. God bless!

  • divinemrsm
    divinemrsm Member Posts: 5,896

    handmaid, wow, reading your story fills my heart with compassion for you. I am so sorry you are having to deal with this as a young woman and a mother to small children. I hope your treatment works for years and years and years! I wish you all the best. Sending many hugs your way.

  • mozuke1
    mozuke1 Member Posts: 37

    handmaid,

    I just want to share that I personally know a woman who was diagnosed while pregnant and scans after delivery showed Mets to bone, liver and brain. Her baby is now 9 years old and she is still doing well, going every 3 weeks for herceptin.

    I wish you all the best!

  • bigpeaches
    bigpeaches Member Posts: 238

    I think to some degree we all have depression, how can you not? There are a lot of new drugs out there that are helping us manage stage iv disease and live longer but it is a roller coaster. Hang in there!!

  • handmaidofthelord
    handmaidofthelord Member Posts: 10

    Thank you so much for your kind wishes! I know life has dealt me with a rough hand, but I try to stay positive as much as I can (there is still much I can be thankful for right now), and the encouragement from people like you helps with that. :)

  • handmaidofthelord
    handmaidofthelord Member Posts: 10

    You are so kind to take the time to leave me this story of hope! ❤️ While I do my best to stay strong for my family, I do fall into anxiety every now and then. Survivorship stories like these are what help me regain strength and believe I can make it until my sons are grown. Thank you very much!

  • positive2strong
    positive2strong Member Posts: 209

    I just read that soap opera star Andrea Evan’s passed away of breast cancer. So then I get overwhelmed. Wondering what type when she was diagnosed etc she was 66. Is anyone on Ibrance and Fosodex with bone, liver, and lung Mets.

    My liver and lung Mets have deceased in size.

    Also wondering if all of you have given up sugar and red meat.

  • chicagoan
    chicagoan Member Posts: 939

    Good news that your liver and lung mets have decreased in size!

    I have not given up sugar and red meat. I find that I need to eat a lot of protein to maintain muscle mass. It probably would be healthier for me to give up sugar but I don't feel like it. I've given up alcohol, cut way back on caffeine but I really enjoy my sweets so I eat them when I want.

  • luvdbyhim
    luvdbyhim Member Posts: 158

    @postivie2strong

    I agree with you when I heard of someone who has died from breast cancer. I have to find out was it the same as mine, did they have it before, how old were they when first diagnosed, ect ect ect. It is a rabbit hole I would find myself going down. I think what helps me not have anxiety is not going down the rabbit hole.

    I have liver and lung mets. I am on Ibrance and Faslodex. Have been on since Nov 2022. Lung mets decreased. 2 of the 4 liver mets are now undetectable and the 2 that are there have shrunk in half. I did not give up red meat. We purchase beef from a farmer who we know and he raises the cows without hormones and any other junk in them. I feel the beef is better for me than any grocery store chicken.

    When I was on Anastrazole my hands hurt so so so bad. It was the joints and bones. My girlfriend had issues with her joints and the doctor said cut out all sugar….i mean ALL no sugar, no high fructose sugar, no honey no stevia no nothing! I tried it and within a week my bones and joints stopped hurting me

    I have not cut out sugar either but I know it would help me bones/joints from not hurting.

  • positive2strong
    positive2strong Member Posts: 209

    Peaches an luvedby him

    Thanks and all others 5hat have responded.
    My latest thing that is having me worried is that my tumor markers are up.

    They had been staying at 45 for some time. Now last month they were 66 and yesterday 69

    Mt white and red cells are low 22

    I haven’t seen my doc in 2 months. I have a call into her to see if I should stop Ibrance for a while I am on day16 I did miss my injections in June because my husband slipped and fell in Michigan and had to have hip replacement . We were planning a 3 day visit that lasted a month. As soon as I got back I had my injections the first week of July

    So of course I am worrying and it is Friday at 5:30 and no word from onc

    So I need all of you to tell me how bad it is that the tumor markers went up and does this mean I will need a new treatment plan

    I so wish I could help all of you as much as you help me.

  • positive2strong
    positive2strong Member Posts: 209

    @heidihill I can’t believe you aren’t on medicine this is a miracle. I am so happy for you. Did you do any special diet love to hear more

  • moderators
    moderators Posts: 7,685

    Bumping this thread to get it going again!