When do most recurrences for HER2 happen? Revived round 2...

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  • Alicethecat
    Alicethecat Member Posts: 535
    edited July 2013

    Hello Leslie

    I had a similar pathology to you and decided to do rads as my oncologist believes that it is the grade of the cancer that is most important.

    Most nights, I sleep easy in my bed having done the most I can.

    Good luck with your decision!

    Alice

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  • sciencegal
    sciencegal Member Posts: 1,120
    edited July 2013

    I agree Alice, me too. Throw all we can at it, to banish the big C forever.



    GOOD LUCK!!

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  • marjie
    marjie Member Posts: 1,134
    edited July 2013

    Hi Ladies...

    Not on here often anymore, but I have just passed the three year mark .... and I didn't even realize it!!  That must mean I'm moving on (as much as one can) from cancer.  It's always there in the back of my mind I think, but life keeps me busy :)

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  • sciencegal
    sciencegal Member Posts: 1,120
    edited July 2013

    Congratulations Marjie!!!!

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  • Alicethecat
    Alicethecat Member Posts: 535
    edited July 2013

    Sciengal

    I like your attitude and I like your posts!

    Aggressive treatment for an aggresive cancer.

    Let's crack it!

    Best wishes

    Alice

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  • sciencegal
    sciencegal Member Posts: 1,120
    edited July 2013

    Thanks Alice! Are you all done with herceptin now?

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  • Alicethecat
    Alicethecat Member Posts: 535
    edited July 2013

    Hi Sciencegal

    One more Herceptin to go on Friday afternoon and then out with my best friend for the afternoon!

    My guess is you're about half-way through. The finishing line is getting ever closer!!!

    Thank you so much Marje for your post. It really gives us hope when ladies who are further ahead take the trouble to come back and post.

    Here's one I prepared earlier...My friend Horsy Girl had grade 3 IDC with HER2+ and one positive node and did all the treatment and is doing great seven years later.

    No recurrence. No mets. She said she'd almost forgotten all about it until I got diagnosed!

    Kudos to you all.

    Best wishes

    Alice

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  • sciencegal
    sciencegal Member Posts: 1,120
    edited July 2013

    Thanks Alice and super congratulations for almost being done. Cool!!!



    And yay for horsy girl- thank you for sharing! sometimes I feel very bleak about my prospects and these posts from long-time Her2+ survivors really, really help.



    Thank you all, so very much.

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  • lkc
    lkc Member Posts: 1,203
    edited July 2013

    Its now 8 yrs this past May for me.

    I think it is really a crap shoot for all of us. The thing that may help is:

    we may recur or NOT, or for that matter get hit by a bus or NOT or live long into are old rockin great  granny days laughing everyday.

    PS: It does get easier with the blessed passage of time!

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  • LeslieVilla
    LeslieVilla Member Posts: 95
    edited July 2013

    science gal.. actually my tumor is 5 cm  not so smal :(  but doing neoadjuvant chemo  is shrinking it.   

    Did you do a double mass? what kind of reconstruction did you have and how did it all come out after the rads and surgery?  are you done now?

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  • sciencegal
    sciencegal Member Posts: 1,120
    edited July 2013

    Oh, sorry I read 2 cms. So we are both "big tumor gals"-dubious distinction.
    Mine was nine, UGH. 3/4 positive sentinal nodes. extracapsular extravasation. double ugh.



    I had the neoadjuvant TCH, and by the time they did my left mastectomy (skin sparing with immediate TE placement, just one side), the tumor was gone and 24 nodes removed were clean.



    But I live in terror of it coming back, of course.
    Doing everything I can to prevent it.



    I had the exchange for permanent silicon implant prior to rads, it healed well and I am happy with the result. seven more rads blasts to go. skin is getting red and sore but hasnt opened up yet. I keep hoping for the best. healthy lifestyle, early to bed, less stress, good food, lots of water, exercise, its all I can think to do. Oh and herceptin until November.



    So thats my story,

    How are you doing??

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  • LeslieVilla
    LeslieVilla Member Posts: 95
    edited August 2013

    Science gal, Actually I found a 2 cm tumor two years ago and refused chemo was too scared of chemo, had two lumpectomies, but found the 5 cm tumor 2 years later so when straight to chemo.  They say my tumor is shrinking and they will stop chemo at 12 weeks instead of 18 (one more round to go,) then I get an MRI next week to see if the tumor is dead or not. if so I guess we discuss surgery. rads.   I'm surprised you needed rads if you had a mastectomy. Did you only have the one done? How many surgeries did you need?  I heard the docs always over do rads and most people drop out  from rad treatment?

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  • sciencegal
    sciencegal Member Posts: 1,120
    edited August 2013

    I sure hope your tumor shrinks away completely like mine did!



    I had a skin-sparing mastectomy so the rads were focused toward the skin (with a cool gold chainmail drape) to make sure no cancer stem cells were hiding in my skin.



    It seems pretty "nuked" right now so I am hoping that we blasted them, if they were there!



    My skin was actually fine until the last two appointments when it got red and started peeling a bit. It was totally okay to handle, after everything else!

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  • goutlaw
    goutlaw Member Posts: 283
    edited August 2013

    Science how are u staged at 2b if u had 3/4 lymph nodes involved? If u have complete response from chemo don't recurrence rate go down?

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  • GIOSGIRL
    GIOSGIRL Member Posts: 4
    edited August 2013

    What a great outlook Shadow! Congrats on your pregnancy and road to recovery!

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  • sciencegal
    sciencegal Member Posts: 1,120
    edited August 2013

    Goutlaw it is a good question that I have wondered myself.The local sentinal nodes were positive intitially (3/4) but then by the time I had the axillary nodes out post-chemo none were positive, so they said stage 2b instead of three.



    It is all confusing to me!!!!

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  • LeslieVilla
    LeslieVilla Member Posts: 95
    edited August 2013

    MRI showed nothing!  I'm so thankful it melted the nodes and tumors.  Heading to surgery for lumpectomy and breast lift on both sides, a 6 week break then 30 days of rads. Sciencegal did you have any tummy troubles with the chemo?  How long post chemo did you stop taking senna!   i can't wait for all the crap to get out of my body.

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  • LeslieVilla
    LeslieVilla Member Posts: 95
    edited August 2013

    Sciencegal, wow your herceptin is over in a few months so you will have your life back again.  You'rr a brave role model for us all and I'm praying your free from this disease forever.  Don't live in fear because fear can make you sick just get up and thank God for each day he gives you and after the 3 year mark 2016 you should not have to worry as the risks of HER2nue+ coming back are VERY small!  praying you have the most awesome Thanksgiving and Christmas you have ever had! HUGS.. Oh and i found a deodorant that WORKS made by Deodomom.  Shipping was free too. I love it. nice not to stink any more!

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  • lalenlou
    lalenlou Member Posts: 25
    edited August 2013

    I was Stage 4, Estrogen+ and Her2Neu+ with a spot on my T-8 vertebrae.  I went through 6 treatments of Taxotere, Herceptin and Perjeta with Zometa added every 6 weeks.  I then had 28 radiations.  I continue to get the Herceptin/Perjeta mix every 3 weeks with Zometa now every 3 months.  My oncologist said I would continue to get the H/P chemo "until it stops working" for me.  She did say one time, "Well, if there is no recurrence after 3 years, we will take a look at stopping them."  I was lucky that I was DX shortly after Perjeta became available to NEW chemo patients only.  It works in combo with the Herceptin somehow to block the HER2Neu cells from getting the signals to grow.  I will do whatever it takes to fight this beast!

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  • sciencegal
    sciencegal Member Posts: 1,120
    edited August 2013

    Lalenlou I SURE hope it kicks those cells in the butt- and right out of your body!



    Leslie sorry for the delay in my reply but I was away at a business conference- I am DEFINITELY back to regular life now that I have recovered from the rads. The herceptin, and having the port, does not bother me at all. I actually wish I could stay on it forever! Just in case. That stuff is liquid gold to me. I think my insurance company would hate that however.



    I didnt really have tummy troubles- I stayed on the compazene for anti-nausea for a full week after each chemo session and did a lot of smoothies with probiotic yogurt. I take the turmeric capsules too- still do. I was able to eat well throughout- REALLy well, I gained weight actually. SO not many tummy troubles there- only the trouble of having an extra inch around it!



    :)



    Hugs

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  • bethanybeane
    bethanybeane Member Posts: 334
    edited August 2013

    Hi Sue. Browsing around for any new information --saw your picture and it touched my heart - bubbling up good feelings brought into that time 2008 by the TCH group. Saw a "gramma" Carolyn, Oklahoma, comment from last year. Hope she's ok. Much love, Bethany ~~~ so glad were FB friends. You: Back to school! Not!

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  • LeslieVilla
    LeslieVilla Member Posts: 95
    edited August 2013

    Sciencegal,  Thanks for replying, my tummy is getting better daily. Still numb in the legs & feet,and the 10 lb weight gain aint pretty.  But my energy is coming back HURRAY!

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  • LisaH
    LisaH Member Posts: 25
    edited October 2013

    Long term triple positive survivors are out here!  I don't check in often, usually once a year around my diagnosis date.

    I was diagnosed when taxol, taxotere and herceptin were all still in the clinical trial phase.  So, I only had surgery, chemo then tamoxifen.  No oopherectormy, no hysterectomy.

    Keep the Faith!

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  • LeslieVilla
    LeslieVilla Member Posts: 95
    edited October 2013


    Just wanted to let you all know I'm two months post chemo and neroapathy or tummy problems any more and the weight is slowly coming off! I had breast reduction and partial mastectomy(lumpectomy) and am recovering nicely.


    Starting radiation in 3 weeks. Hang in there Ladies!

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  • sciencegal
    sciencegal Member Posts: 1,120
    edited October 2013


    Lisa congratulations!! Thank you for coming back to brighten up our day. I am so happy for you. Yay!!!


    Thank you for being in the clinical trial- we all thank you!!!


    Leslie I am so glad you are feeling better. I am almost one year after diagnosis and feeeling pretty "normal" I must say. A new normal but it's good. I am still working on that chemo/steroid weight gain too- Ugh!!!


    Hugs to all and happy weekend

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  • cvmarilyn
    cvmarilyn Member Posts: 179
    edited October 2013


    It's always good to hear from you who have survived a long time. I sure want to be in your club ;)


    How did you get to where you are mentally? I am struggling with not wanting attention for The BIG C and wanting attention for it - weird I know - but it is what it is.

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


    cvmarilyn, don't feel weird, this stuff messes with our heads and I don't think any reaction is weird. Sometimes I too want to not think of it at all, yet other times I do want it acknowledged. I don't think there's any right, wrong or normal to it.

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  • ChristineR66
    ChristineR66 Member Posts: 24
    edited October 2013


    Thanks for such great posts ladies. I had a really weird day today. Just really a lot of anxiety for some reason. I get Herceptin every 3 weeks. I feel like I'm kind of tired afterward and I've gained quite a bit of weight since I started all my treatments, about 25 lbs. Some of that was eating because, well damn it, I'm going to eat whatever I want. My original path report came back saying I was HER2 2+ equivocable but the FSH test came back neg. so my onc did not prescribe Herceptin. Then in 9/2012 I had a double mastectomy & a big majority of the tumor was still there! This time my path report came back HER2 3! BUT...my FSH STILL negative! I got a new onc & he is treating me with Herceptin. My last scan was in March of this year & it was NED so I'm just praying I stay that way (as I know we all are!) My situation is so unique! The original tumor was 9X11 centimeters! The mammogram AND the ultrasound did NOT show anything abnormal & the docs told me to come back in 6 mos. Because I had breast implants at the time, they told me it must have been some kind of scar tissue. After 5 mos I saw my plastic surgeon to clean out the "scar tissue" & replace the implants, only to find out after that is was indeed BC. I have learned a valuable lesson, BE YOUR OWN ADVOCATE! Thanks for sharing & not making me feel so alone thru all of this!

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  • LindaKR
    LindaKR Member Posts: 1,577
    edited October 2013


    Christine, wow what a journey you've had, thank you for sharing.

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  • sciencegal
    sciencegal Member Posts: 1,120
    edited October 2013

    Hi Christine- I just saw your story, my tumor was also 9 cms by the time they acknowledged that it actually was something other than dense breast tissue. I hear 'ya! If i hadnt wanted a biopsy that day of my mammogram a year ago we never would have found it. My breast felt like a rock and I kept saying something is wrong.

    I am sorry that you went through something like this as well. I thought my situation was so weird and unusual but really it isnt.

    As for the herceptin- research at our university and others has shown that often triple negative tumors have little nests of her2+ cancer stem cells driving the tumor production. And the herceptin can be so effective. Thats why your doc is giving it to you and bless his or her heart for getting the insurance to cover it- that is a HUGE fight because it is crazy expensive. You have a team who really cares about you.

    Forget the side effects- that stuff is liquid gold! who cares if we gain 20 pounds if we are alive, right??? We can lose it later (i am down ten of my 20 overall gain, almost done with my year of herceptin.)

    GOOD luck and hugs!

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