Back again for an annual update

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LuAnnH
LuAnnH Member Posts: 8,847

I’m sorry that I don’t participate as frequently as I used to but I get so busy that I kind of try to put cancer in my rear view mirror. It will always be there I guess like a car following me but so far it hasn’t caught me. I just had scans that were clean again so that makes we over 3 years NED and over 12 years with stage IV cancer.

I received my dx July 2, 2016, it was bone mets to the sternum & eventually moved into my ribs. They never could tell me how many ribs were involved because of the locations of the tumors. I am ER/PR & HER2 positive and fortunately my cancer responded well to AI’s only initially and after a year and some progression herceptin was added.

The AI’s & herceptin were effective for about 8 years when the Mets had invaded my lungs. At that point we stopped AI’s and went to a long 6 months of Navelbine. I was hospitalized several times due to low white counts but after 6 months I asked for scans and a change in tx. I was NED on that scan but ended up in the hospital again anyway with a very bad pneumonia. I had about a 6 week break in treatments to get my health back and went onto Affinitor Herceptin and Aromasin. After my next scans in about 6 months we dropped the Affinitor. I have been on Aromasin and herceptin ever since and been NED.

I always laugh when they want me to have scans. They say to me “you haven’t had scans for awhile, do you think we can have you get a scan?” It is the question mark that cracks me up. I used to count the days until I hit exactly 3 months to get a scan in 06 and 07. It did take me awhile to me awhile to get more confident in waiting longer for scans but now it is them pretty much begging me to get my scans.

I always come here to share my scans because I know in 06 when my life stopped I searched high and low for stories like this. Unfortunately most people active on the boards are dealing with their disease being active, needing help dealing with side effects questions or maybe looking into clinical trials. It seems when we become stable or NED for long periods of time we drift away. For that reason I like to come back and let everyone know I am still here, NED and living life! I actually purchased a home last month because I wanted to be sure I was financially sound as I can possibly see hitting social security converting from disability to retirement in another 10 years

Comments

  • Felrogyahoo
    Felrogyahoo Member Posts: 6
    edited October 2018

    Congratulations, such wonderful news from you. Thank you for updating. It's always hopeful to know of Mets longevity. Continued success with your treatments.

  • AmyJM
    AmyJM Member Posts: 665
    edited October 2018

    LuAnn,

    So glad to hear you are doing well! May it continue that way for many, many years! Thank you for checking in. It is nice to know how people are doing and it gives us all hope for the possibility of many more years too!

    Love n hugs,

    Amy

  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited October 2018

    Congratulations, LuAnn!! I think they should look for medicines that coax ER-positive HER2-negatives to gain HER2 expression!!! Wouldn't that be great- we could all add Herceptin etc? How does it feel to be an exceptional responder?!!

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited October 2018

    Congratulations to you! Thank you for the update

  • Utopria
    Utopria Member Posts: 204
    edited October 2018

    Thankyou for the update and the wonderful news..Congratulations! It certainly gives newbie Mets diagnosed like me HOPE! Hugs and all the best for a bright and long future!

  • HLB
    HLB Member Posts: 1,760
    edited October 2018

    Hello Luann, thanks for the update and keep them coming! Was just thinking of you yesterday. So glad to see this update as I will never forget how bad that pneumonia incident was. See you at next year's update!

  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited October 2018

    The pneumonia was a very close call, if my daughter didn’t find me unresponsive when she did I would not be here giving updates and the irony would have been my death would not have been a result of the cancer because it was nowhere in sight.

    This isn’t a fun disease but it can be managed depending on how you respond to the meds. I know my oncology center is doing trials in harvesting T-cells in your body and changing how they respond to cancer allowing them to kill cancer cells as opposed to not being able to stop their growth. I’m not sure which type of cancer they are doing the trials on but the results have been sounding good. It just takes one break through to get the right drug or drug combo that will work for any one person. I pray that in my lifetime that mets will be just as treated as easily as early stage cancers

  • LaughingGull
    LaughingGull Member Posts: 560
    edited October 2018

    Wonderful news. Congratulations and thanks for the update.

  • Meja
    Meja Member Posts: 102
    edited October 2018

    LuAnn, thank you for sharing and congratulations

  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2018

    Always good to hear from you LuAnn. I assume that all the kids and grands are flourishing. Best.

  • illimae
    illimae Member Posts: 5,710
    edited October 2018

    Congrats!🎉🎈 🍾

  • jensgotthis
    jensgotthis Member Posts: 937
    edited October 2018

    I love hearing stories like yours! Keep on keeping on.

  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited October 2018

    LuAnn, congratulations on another clean scan and years of longevity living with this disease. It helps so muchto read experiences like yours, how you give details and describe some of what you’ve dealt with. It’s very inspiring and offers HOPE. Here’s to many, many more years of living a full life.


  • Heidihill
    Heidihill Member Posts: 5,476
    edited October 2018

    Wow, oh wow. Did I say wow? 

    Please keep on keeping on, LuAnn! And telling us about it.

  • Legomaster225
    Legomaster225 Member Posts: 672
    edited October 2018

    Congratulations! Thank you for the positive story. Many, many more years ahead.

  • JFL
    JFL Member Posts: 1,947
    edited October 2018

    Congrats and please keep posting your annual updates!!! Your journey gives us hope.

  • Selkie36
    Selkie36 Member Posts: 31
    edited November 2018

    Thank you and God bless!!

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited November 2018

    thank you for this post!! It helps me so much to read it and know that there are people kicking cancers butt out there and living (relatively) normal lives! I am striving for this and just received great clear scan results today. I have been NEAD since last year :-

  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited November 2018

    Love fromPhilly, I also have been NEAD since last Oct 2017. Tonight I hosted a wine tasting party. I forgot I have stage IV cancer..even just for two hours.

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