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8 year survivor stage 4!!!!

jnh
jnh Member Posts: 46

Fellow Warriors,

I haven't posted in a while but just wanted to share that I am celebrating today! It has been 8 years since my Stage 4 diagnosis!! Unbelievable, really, when you look at statistics. I have been on a multitude of treatments, but all have worked for a while....adding up to 8 wonderful years! I have worked full time as a special ed. Teacher the entire time (only missing 2 or 3 days due to fatigue). It hasn't been easy and I've had to navigate through many side effects. Caffeine is my friend. 😜 ☕️ This year, I watched my oldest son graduate and am getting ready to move him in to a college dorm room soon! My younger son is a senior in high school now! These are events I doubted I'd be here to witness. But, happily, I am

I just started a new treatment regime and am feeling quite well, overall. Some side effects, but, honestly, I am thankful just to be here. I have a grateful heart and am enjoying every minute. Celebrating at the beach right now with my BFF.

Love,

Julie

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Comments

  • olma61
    olma61 Member Posts: 1,014
    edited July 2019

    So wonderful!

    Heart

  • Momchichi
    Momchichi Member Posts: 98
    edited July 2019

    Amazing- just what I needed to hear today. May you and all of us enjoy many, many more years

  • mara51506
    mara51506 Member Posts: 6,002
    edited July 2019

    Congratulations on 8 years and seeing both sons grow up. Glad you were able to keep working too. That gives you space away from the disease and ability to have more of a normal life. May it keep going and going for you.

    I am coming up on 4 years with brain met and I hope to continue for as long as you have. We will see what happens for me. This is always inspiring to see people going for so long with what sounds like a good qol.


  • Faith123
    Faith123 Member Posts: 26
    edited July 2019

    Awesome news!🍾🥂

    Really needed to read this today!

    Wishing you continued success in all your future treatments

  • candy-678
    candy-678 Member Posts: 4,073
    edited July 2019

    Wonderful news !! Yes you deserve to celebrate. Wish we could bottle up your success and spread it all around.


  • SchnauzerMom
    SchnauzerMom Member Posts: 75
    edited July 2019

    So happy to read your good news--congratulations!!

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited July 2019

    jnh. I was reading your TX history. It's a lot like mine except in a different sequence. Which one worked best on your liver mets? You were on AA for two years? I was only able to tolerate it for six weeks. It looks like you did not have any local procedures on your liver. I had 2 y90's that were the only thing my liver mets responded to. It gave me 18 months of inactive mets. Unfortunately,, New ones have appeared now.

    I'm very interested on how you got to this monumental goal. Especially since you have organ mets. Are you NEAD or stable? I have lung and chest mets, too. But, they seem to respond to TX plus they don't cause any SE. My stubborn liver monsters are my biggest concern. I'm 2 1/2 years living with organ mets. I'm on line 3 of TX plus y90.. But that does not include my 27 year history of 4 DX of BC and MBC. I even had bone Mets to C3 ( I did a fusion, corpectomy w strut and graft C 2-5) in 2000. I was 44 at my first DX.

    After my liver BX in December 2016, I started Ibrance/Femara. On my first scan my lung was stable but liver mets growing. So I did 3 procedures for lots of tumors in my liver. That gave me 18 of NEAD in liver. IL stopping working 20 months. So she put me on AA. Disaster for six weeks. I changed MO and just finished my 4th cycle of X. I'll find out if it's working on July 15.

    I'd love to hear your story. You must be young with two teens. Congratulations💞



  • jnh
    jnh Member Posts: 46
    edited July 2019

    hi! Thanks for your reply! I am 51. My first diagnosis of stage 2 BC was in 2002, I was 34. After a bilateral mastectomy and 6 mo of the nasty ACT chemo, I was happily “cancer free” (but, apparently not really😜) for 9 years!

    Then, the BC metastasized to my sternum bone and both lungs (innumerable spots and wrapped around one lung). My treatment history since then is long....it’s longer than it appears on the board. I also had 4 years on and off Kadcyla and now am on a treatment of 3 orals.

    First of all, I lucked out from day one with an amazing and brilliant ONC. He is simply, the best! I pray and try to stay healthy, exercising and eating right. (With some cheat days, though, because life is also short and you need to enjoy it!) but, as you know, we can do all the right things and still have bad stuff happen. A lot of it is that I have been lucky. All of my treatments have worked for a while and Kadcyla worked for 4 years.

    Also, my BC has been tricky in that it has changed pathology many times. It was triple negative first, then HR+ her-, then HR-her+, then back to HR+her-. With a mixed response more recently, my ONC and I believe I have both pathologies present at once (HR+ in my chest area and her+ in my abdomen). So, we decided on a treatment of 3 oral meds: Xeloda to cover it all, Arimidex to target chest mets and Tykerb to target abdomen mets! Hope it’s a winning trifecta! The Kadcyla knocked out my liver mets right away.

    One key is that I have asked for a biopsy every time a new met appeared. Because my cancer has transformed many times, it made me eligible to use many more targeted therapies, which has kept me alive! Although, the cancer changing is also how it outsmarts the medicine! Insidious cancer! I have been NED twice, but then, of course, the cancer starts to grow again. I’ve also been very stable at times.

    Afinitor and Aromasin was VERY rough. Finally had to take low dose of steroids on and off every 5 days to tolerate the monster mouth sores!

    Hope this helps! I wish you all the best luck and many more years of kicking cancer’s butt!

    Julie

  • LuAnnH
    LuAnnH Member Posts: 348
    edited July 2019

    that is such GREAT news and CONGRATS on you son's graduation. Hope things keep going well for you!

    LuAnn

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited July 2019

    That's quite a story, I've never been on Kadcyla or Tykerb. I've had two liver BX and they have had the same receptor studies. HRPR+ HER-. But my tumors have gotten smart, they are now hormone therapy resistant, ( ESR1 on genomic. testing). My MO said so that explains why you haven't responded to AI's. On the reports it says this and other ones makes my tumors more aggressive.

    Was it you being TN that made you eligible for Kadcla? Thanks for writing her. We all need hope.💞

  • jnh
    jnh Member Posts: 46
    edited July 2019

    The Kadcyla is an IV treatment similar to Herceptin for Her2nu + BC. Tykerb is also for Her2nu + BC.

    I’m sorry to hear about the hormone therapy resistance, but keep on fighting! So many new meds seem to come out each year.

    Are you on Xeloda now?

    Julie


  • shutterbug73
    shutterbug73 Member Posts: 284
    edited July 2019

    I just love these posts! Congratulations on 8 years Julie

  • micmel
    micmel Member Posts: 9,789
    edited July 2019

    that is absolutely wonderful. Maybe you get many times more, thank you for sharing. Enjoy you’re BFF time.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,630
    edited July 2019

    Julie,

    Congratulations! That is excellent news. I have been saying that I’m almost at the 8 year mark. Your post made me look at the calendar and realize that I’ve hit the 8 year mark as well. Time to celebrate 🎉.

  • Faith123
    Faith123 Member Posts: 26
    edited July 2019

    wow Grannax2,you’ve had bone Mets since 2000

  • divinemrsm
    divinemrsm Member Posts: 5,887
    edited July 2019

    Julie, love reading about your eight years and still going experience with mbc. It’s inspiring and encouraging! I love your perseverance and keep moving forward attitude!

    And Caryn, same with you. Congratulations to both of you!



  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited July 2019

    yes yes!! Please be sure to remember to pop in and let us know when you’ve hit the 9 year mark!

    This is something to celebrate! I’m imaging at the time of your diagnosis you did not foresee being around for so long to come.

    Your voice and encouragement really gives me hope that I can be on the other side of the scary percentages!! 💕💕💕💕💕💛💛💛💛🌈

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited July 2019

    Two of us at 8 years? WOW great news.

    Faith. I HAD Bone mets only to C 3, After TX I've been NED for bone Mets since 2001.

    Yes I just finished 4 cycles of X. I'm counting down the days for scan results on July 15.💞

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited July 2019

    Two of us at 8 years? WOW great news.

    Faith. I HAD Bone mets only to C 3, After TX I've been NED for bone Mets since 2001.

    Yes I just finished 4 cycles of X. I'm counting down the days for scan results on July 15.💞

  • cure-ious
    cure-ious Member Posts: 2,700
    edited July 2019

    Shutterbug!! Great to "see" you- it seems you are going strong now five years?!!

  • jnh
    jnh Member Posts: 46
    edited July 2019

    grannax2, wow, I didn't realize the date of your bone mets the first time!!! You have been stage 4 for 18years then!!! You are an amazing miracle and I hope to be like you someday!!!

    Julie

  • jnh
    jnh Member Posts: 46
    edited July 2019

    Exbrnxgrl,

    CONGRATULATIONS to you as well!!! Look at us, twinning!!! How blessed and lucky are we?!?


    🎉🎊🎉🎊🎉

    Julie


  • jnh
    jnh Member Posts: 46
    edited July 2019

    loveFromPhilly,

    You will!! Your treatment is a good one and There are so many more treatments out there for you to try later!!!

    Love,

    Julie

  • divinemrsm
    divinemrsm Member Posts: 5,887
    edited July 2019

    I am also 8+ years.


  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited July 2019

    me too

  • cure-ious
    cure-ious Member Posts: 2,700
    edited July 2019

    Wow!! y'all are for sure making my day!!!

  • jnh
    jnh Member Posts: 46
    edited July 2019

    DivineMrsM and ABeautifulSunset-

    Look at us ROCKING IT, ladies!!Oh, feeling so happy to “meet” all of you!!

    Trying to send some pix ...please send some of you if you can!

    imageimageimage

    Top pix is me (left)celebrating with BFF

    Middle is me on beach

    Last is me with my sons!


    julie

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited July 2019

    gorgeous pics Julie!! I’m so happy for you and your family and loved ones. It is the best to be able and available to celebrate 🎉. I used to be kinda a flake about going to peoples parties, I would just funk out and not be in the mood to socialize. But now I try to not miss any celebrations. I love them! And that beach looks sooooooo beautiful. Where were you? I want to be swimming in that water!

    And congrats to all the 8+ yr amazing people!! Exbrnxgrl, Beautifulsunset, Divine!! And all the rest who are reading and dropping in.

    I love sharing pics!!! This is a recent one with my family. My dad and I are holding hands, my mom next to me (75th bday brunch), my brother, my sis in law and my amazing niece!! (I’m in pink!)

    image


  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited July 2019

    imageMy 55th bday last weekend

    imageMy son, daughter, me and my hubby in May.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited July 2019

    hi Sunset!!!! You are beautiful!!!!