HER2+ with recurrence within a year

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KeepingFaith69
KeepingFaith69 Member Posts: 508

Hi,



I had a recurrence while still on Herceptin in November 2011. This was followed by surgery and more rads. I'm panicking as I have developed a cough and shoulder pain.

Has anyone gone longer than 2 years before next recurrence? Also interested in treatments that would be available.

Comments

  • lovetodance
    lovetodance Member Posts: 9
    edited December 2012

    FOR LUNG METS TO CAUSE SYMPTOMS , IT HAS TO BE BIG ENOUGH TO COMPROMISE LUNG FUNCTION AND GIVE SYMTOMS

    1. MOST OF THE TIME THERE IS SHORTNESS OF BREATH. DO YOU HAVE IT?

    2.WITH CANCER,PHLEGM IS MOSTLY BLOODY DUE TO LUNG TISSUE DESTRUCTION. WHAT COLOR IS YOURS?

    3.WHEN WAS YOUR LAST PET SCAN?, WHERE CHEST XRAYS OK? IT COULD BE BRONCHITIS, DID ANTIBIOTICS HELP?

    4. THE RIB PAIN TWINGE COULD BE FROM TOO MUCH COUGHING? WHERE IS YOUR ARM PAIN PRECISELY? DOES IT HURT TO THE TOUCH? MOVEMENT ETC. IF IT HURTS WITH MOVEMENT IS MOST LIKELY MUSCULOSKELTAL

    5. I KNOW HOW YOU FEEL, IT SUCKS BECAUSE NOW WE ARE ALL PARANOID. BUT I FEEL AND HOPE YOUR CASE IS NOTHING BAD

    KEEP POSTED

  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited December 2012

    Hi

    Thanks for responding.

    I get out of breath at the moment, mainly when I am carrying boxes up stairs (currently moving house).

    Phlegm is clear - no compile of blood

    Scan is this coming Wednesday

    Sore shoulder is mainly when I move, it also clicks.

    Rib pain has moved to include my lOwer back - I pray it's due to me sleeping on the couch (trying not to wake husband) and carrying boxes up stairs.

    Fingers and ties crossed for a great scan result.

  • JadeGirl
    JadeGirl Member Posts: 35
    edited December 2012

    Sorry to hear!  I had a sore shoulder (with some clicking) and was sore around the ribs too, the doctors told me it was side effects of my treatment so I went to the physio who diagnosed me with acute radiation scarring/cording.  I see her regularly now to get "massages" and it is getting much better.  

    Also, my oncologist has offered me an annual course of lapinitab since my profile fits those who are likely to get some benefit from it (I think yours too right? HER2+ with reoccurance).  Not sure if I want to continue another year of costly treatment (insurance won't pay over here), the associated side effects plus the benefits is somewhat minimal compared to Herceptin, me thinks I am better off including more exercise in my life or a dream holiday...hahaha...anyway I have to let him know this week.  Perhaps you could ask your doctor about the drug too?

    All the best and kia kaha - thinking of you!

  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited December 2012

    Hi there,

    Thanks for your thoughts.

    X-ray results suggest lung mets. I meet with the oncologist next Wednesday.

    I'm feeling deflated and can't bare the thought of more chemo....

  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited December 2012

    I was just 2 years out when I was diagnosed with mets to my brian and liver.  I had my first gamma knife therapy today and meet with My MO tomorrow. I will tell you what she tells me about my treatment possibilites.

    hugs to you.  those first days are indescrible.  Today, as I near a plan, I feel like i am breathing agin

  • Alicethecat
    Alicethecat Member Posts: 535
    edited December 2012

    Hello Keeping Faith

    Like you, I'm ER- and HER2+ and always looking for clues about what is driving our type of breast cancer.

    We know about HER2+ and Herceptin but what is driving the ER- PR- element of it?

    In brief, an article on the Cancer Research UK website in June 2011 reports: "...it’s likely that androgen receptors are responsible for fuelling the growth of ER-negative cancer cells in molecular apocrine cancers".

    The report suggests that this type of breast cancer could be treated by drugs for prostate cancer that are already being used but have not yet been tested for breast cancer.

    scienceblog.cancerresearchuk.o...

    Would this be worth asking your oncologist about this?

    I am not a doctor but until the docs can get this type of breast cancer sorted, I'm  asking questions!

    Interestingly, Arimidex blocks androgen receptors...

    Best wishes

    Alice

  • LoriKnous
    LoriKnous Member Posts: 80
    edited December 2012

    Diagnosed in 2007, a/c and taxol/herceptin/surgery/radiation followed by the rest of my 1year herceptin. Finished that in 9/2008. Update, 3/2012 mets to my bladder/ovary w/acites in abdomen/lungs. This year it was taxol/carboplatin/herceptin and now just herceptin/pertuzimab/zomeda. No progression on the last scans so I guess it's just on with life. I've never felt so fearfull of "life". How do you plan......when you just never know what's around the corner.

  • JadeGirl
    JadeGirl Member Posts: 35
    edited January 2013

    Hi KeepingFaith,

    I have just come back from holidays but have been thinking of you. Your last post made my heart drop, I am so sorry to hear.  I sure your oncologist will be giving you the best options, and know you are not alone - we on this board will help support you on this next journey.  Drop us a line when you get the chance (and if you feel up to it).

    Gentle hugs,

  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited January 2013

    Hi Jadegirl,



    Thank you. Feeling battered and overwhelmed, but each day gets better.



    SE from Xeloda and Tykerb are more than I anticipated, and I hope it will pass.

    Lying on the bed, aching screw here and asking myself....... Is this living?

    I think not.



    I'm Praying for Peace and vitality

  • christina0001
    christina0001 Member Posts: 1,491
    edited January 2013

    Have your SEs improved any? I hope you are doing okay.

  • Vickiss
    Vickiss Member Posts: 7
    edited January 2013

    Hope your SE have dimminished. My MO reduced my dosage twice before the SE became tolerable. I too wondered about quality of life before the dosage changes.



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