I am a miracle?? Ok, I'll take that!!

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JeninMichigan
JeninMichigan Member Posts: 2,974
edited November 2018 in Stage IV/Metastatic Breast Cancer ONLY

I was told to me by my (new) oncologist today.    I was dx in Feb. 2008 Stage IV from the start with liver, bone and chest node mets.  Her2 positive and weakly ER+.   I had a lumpectomy and six rounds of Taxotere, Carboplatin and Herceptin.   After three rounds in June 2008, I was NED .. everything resolved.  Finished chemo, did radiation, added Zometa, Taxomifen and then a year of Tykerb and continued Herceptin.   Eventually came off Zometa and have been on Herceptin ever since.   In July 2017, I stopped taking Herceptin after a consult at the University of Michigan.  They felt it was no longer necessary.   I stopped right there and then.  My cancer center in Toledo was only sort of on board.  My previous oncologist left and the new guy was pretty nervous about it but agreed with a pet scan in 6 month.   I am sure many of your know how hard it is to get insurance to pay for a PET scan and even worse if you are not in treatment.   After three months of arguing, my company is self insured and they overrode the insurance company and agreed to pay for it.   So now 9 months out of treatment, my pet scan came back clean.   

I went into today to review the results and the oncologist said, "you know you are a miracle".   I said, "Yeah I begged and prayed to be one so I am pretty happy".   So we will pay attention to how I feel, get tumor markers drawn, visit every six months to check in but he doesn't feel like I need to have any more scans unless I psychologically need one or have symptoms.   

We did talk about the emerging immunotherapy and how this could really make a difference.    He said I must have my own blend of immunotherapy in my biology.  

I'll never feel totally at ease and free from this disease but today I am celebrating my reprieve.    I hope this gives some hope.  

Jen

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Comments

  • gonegirl
    gonegirl Member Posts: 1,871
    edited May 2018

    Jen. When I grow up, I want to be you. Wonderful news.

    Susan

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  • Chicagoan
    Chicagoan Member Posts: 728
    edited May 2018

    Thanks so much for posting this! Miracles can happen.

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  • EvaGor
    EvaGor Member Posts: 41
    edited May 2018

    Wonderful news!

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  • Kkrenz
    Kkrenz Member Posts: 100
    edited May 2018

    this is inspiring....thanks for posting...can I ask why the tykerb if you were Ned?

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  • Tina2
    Tina2 Member Posts: 2,943
    edited May 2018

    Brava, Jen. I'm so happy to learn this. You are a true wonder woman!

    Tina

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited May 2018

    Kkrenz - My oncologist wanted me to take Tykerb for brain protection.  Plus she said Herceptin and Tykerb work two different ways and if I could tolerate it she wanted me to do it for a year.  


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

    image

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  • Kjones13
    Kjones13 Member Posts: 1,520
    edited May 2018

    Jenn! I am soooo happy for you! What an amazingly beautiful report! And I second the above statement, when I grow up, I want to be just like you 😍😉 celebrate and enjoy no treatments!

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  • Kanga_Roo
    Kanga_Roo Member Posts: 333
    edited May 2018

    Jenn, I love reading reports like this - so happy for you - it gives the rest of us hope

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

    Congrats on the clean scans, Jen and for your own successful brand of immunotherapy!! The wonder of our bodies when it's working. No treatment sounds so awesome.

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2018

    Great news! Congratulations, Jen! It is always so inspiring.

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  • jobur
    jobur Member Posts: 726
    edited May 2018

    Jen, This is so fantastic to hear! Long may you run, and with no more tx, ever! (Sounds like you had a great plenty over the last 10 years.)  I truly believe with all the new therapies there will be more miracles like yours. 

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited May 2018

    Jen,

    What wonderful news. Thank you for sharing. It is a miracle that you have been NED for so long and are no longer having treatment or even scans. You are the thing dreams are made of. WOOHOO!

    I have read some recent posts from a few others who are NED and no longer on treatment. I think you are all HER+.

    Let's hope that the miracles multiply and that someday soon those miracles will be commonplace and no longer considered exceptions.

    Hugs and prayers from, Lynne


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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited May 2018

    Jen,

    You truly are that 1%. Amazing. I can't believe it! It is so good to hear these stories.


    Janis

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  • pajim
    pajim Member Posts: 2,785
    edited May 2018

    Congratulations to you, Jen! I'm so glad a few people manage to kick this disease to the curb (so to speak).


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  • Paco
    Paco Member Posts: 208
    edited May 2018

    Jen, you are a miracle and hopefully the new paradigm for the future of Stage IV breast cancer.

    Thanks for sharing your brilliant news!

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited May 2018

    happy day for you!

    Love to be i your state one day!

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited May 2018

    Wonderful wonderful wonderful! Love to hear this! Thank you for sharing hope! So happy for you!

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

    Jenn,

    Wonderful! May the miracle continue forever

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

    Off the charts!! Congratulations, Jen!!! Live long and prosper...

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  • niiankrah1
    niiankrah1 Member Posts: 13
    edited May 2018

    I am not happy that you are not taking anything. Your cancer has been kept at bay because something has been working for you. The problem with cancer treatment is that doctors do not know what treatment would work for who. So it is a trial and error. You are a miracle because the choice of treatment worked for you. The cancer is still there but not detectable or measurable. Therefore it is a mistake, in my view, to give it any wiggle room to flare up by coming off everything.

    I say this because I have followed a few who died within 3 weeks of their last NED declaration. They did not make it to the next 6 month scan. The cancer sneaked up on them as they rejoiced. The doctors let down their guard. And it went downhill very quickly.

    I want you to continue to beat this disease. Despite the myriad of treatments we are very far from conquering a stage 4 diagnosis. Keep your guard up.

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  • 208sandy
    208sandy Member Posts: 2,610
    edited May 2018

    Jen - Best News Ever - I am just thrilled for you - ENJOY!

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  • lulubee
    lulubee Member Posts: 1,493
    edited May 2018

    Jen, this is amazing! So glad for you! It's good to hear stories like yours.

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited May 2018

    Thanks Everyone.   

    Niiankrah1 - I appreciate what you are saying.  However, I am completely at peace with my decision.   I have consulted with a group of oncologists at the University of Michigan Cancer Center who have studied women exactly with my pathology (HER2 mets de novo) who have been exceptional responders to Herceptin and have been able to come off treatment without it coming back .. one now at 15 years and many nearing 10 years.    I am at peace if it comes back, I can go back on treatment (if I choose).   10 years of being in treatment takes a toll physically, financially and otherwise.   I begged to be able to raise my daughters and have done so.  While I am not ready to die by any stretch, I am also completely comfortable with the potential risk of going off treatment.   

    Also I am not at all off my guard.   Currently, I am in the best physical shape of my life.   I have lost 34 pounds and at 52 years old, I can outlast the 20 year olds in my workout classes.    I see my naturalist regularly and keep my life as stress free as possible.  While none of those things guarantee me anything but neither does the Herceptin as many know.   You do the very best you can do and at some point you just put it in God's hands.    

    Breast Cancer is like 15 different diseases all lumped under one.  We are all different and unpredictable.  What works for one we see doesn't do a thing for another.   You just can't compare each other's experiences. 

    My best to each one of you.  I wish I could pass out slices of this good fortune as I was share it with each of you. 

    Jen


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

    Jen, I am always thrilled to hear how well things are going for you! It is sooo inspirational.

    niian's post about those whose demise came quickly after being off treatment is highly anecdotal with absolutely no details to go by. It really cannot be applied to your situation at all.

    I get what you are saying about being at peace with how things unfold from this point after all this time. I am 7+ years stable since diagnosis after the first year of “big" treatments, and I've come to terms with so much in these seven years. It's hard to explain how I feel now, but I'm not as panicked or regretful or have as many loose ends in my life.. The stretch of years has allowed me to make adjustments over time so that I’m focused on living more meaningfully...and more fully.

    Thanks for sharing your wonderful story of hope and happiness!


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  • Maire67
    Maire67 Member Posts: 768
    edited May 2018

    Jen. Such wonderful news for you. Enjoy every moment and thank you for your story. Hope is a wonderful gift to all of us. Mair

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  • niiankrah1
    niiankrah1 Member Posts: 13
    edited May 2018

    Thank you for clarifying that you see your naturalist regularly. That is a big deal. It means that you are not off everything as your original post impressed.

    Until a permanent cure, not measured on a 5 year scale, is found, we are left with anectdotes.


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  • DATNY
    DATNY Member Posts: 358
    edited May 2018

    Thank you for sharing such great news and best wishes for the future! But certainly Herceptin alone could not have done it without the help of the other lifestyle changes you are mentioning briefly. Would you please be so kind and let us know with more details what have you changed in your lifestyle since diagnosis? What diet, what supplements, what daily routine? Anything you could share might help some of us here.

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  • finallyoverit
    finallyoverit Member Posts: 382
    edited May 2018

    Thank you for sharing, Jen! It truly does give others hope !! Congrats

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  • niiankrah1
    niiankrah1 Member Posts: 13
    edited May 2018

    DATNY thanks for adding to my skepticsm. OP please help by giving more details on what you have done besides the oncology experts. As far as I know stage 4 means terminal in their book so it does not make sense to take one completely off drugs. Reduce dosage, take breaks, yes, but not completely off.

    There may be more to your wonderful story although you may not want to credit naturalists and other lifestyle changes.

    When the experts tout the wonders of herceptin they will omit, just as you did in your original post, that you were doing other anectdotal things. But you do those unproven things because they are valuable.

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