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HER2 Positive-anyone 10 years out?

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Comments

  • lago
    lago Member Posts: 11,653
    edited May 2014

    Remember "IF" is always in the middle of  "LIFE"

  • annika12
    annika12 Member Posts: 92
    edited May 2014

    lago- love it :)

  • girlstrong
    girlstrong Member Posts: 299
    edited May 2014

    great advice lago...thank you:) 

  • denny123
    denny123 Member Posts: 1,570
    edited May 2014

    I didn't do a drastic change since I have always tried to have a healthy diet.

    I do try to limit fats and sugars.

    Every food that I read that can help the cancer to grow, I research on.  Sure doesn't leave much to eat!

    But the saying that "moderation is the key" is true.  I don't know why I am still here as a 12 year survivor of Stage 4 BC, so maybe the fact that I do watch my diet...helps.

  • yensmiles
    yensmiles Member Posts: 211
    edited May 2014

    Hi Denny,

    this is the first time I'm writing in and would love to know what's your diet plan, specifically what to avoid and what to eat?

    Now i'm eating loads of turmeric (curcumin) in my diet and am a pescatarian. 

    Also noticed that you did Herceptin after chemo? is that the standard?

  • denny123
    denny123 Member Posts: 1,570
    edited May 2014

    yen-I bought Tumeric, but seldom use it.

    Your pescetarian diet is a lot like mine, but I eat chicken.  You know the drill-avoid preservatives, fried food, sugar, high fat...anything yummy.  So it is your basic Mediterranean diet.

    We do have to avoid Soy.

    I had Hercpetin with Gemzar in 2004 for my liver mets, and then stayed on Herceptin until a few months ago.

    It works so well that most women who are Her2Neu + get it for at least a year.

  • Gretta
    Gretta Member Posts: 34
    edited September 2014

    Hi Girls, Don't want to hog your posts,  looking everywhere for girls with similar dx & saw this thread re "10 years out with her2 +  I'm really keen to hear from any of you with the above dx. I haven't been coping well & need to hear some positive news. I had 8 cm of DCIS with multifocal IVC measuring 2.5cm. My pathology showed a KI 67 of 30 which I know is high for recurrence, also necrotic areas in the breast taken. I really wanted a BL mastectomy but the surgeon said there was no evidence of disease in the Left. Now have a lump in the remaining breast which on U/S looks normal. I'm really scared because I know what was removed if a very aggressive form of breast cancer. I'm frightened I won't respond to the treatment & when the treatment finishes the cancer will take over. Need to hear from some girls with similar dx who are doing well.

  • lago
    lago Member Posts: 11,653
    edited September 2014

    Gretta my tumor was 6.5cm in total, 5.5cm IDC/1.5cm DCIS (noninvasive). I did have some LCIS in the other breast so it was recommended in my case to get the BL. I am over 4 years from diagnosis with no evidence of disease and plan on staying that way. If you are hormone positive they will put you on meds for 5-10 years to prevent it from coming back.

    But I have a friend who has been diagnosed for a 3rd time. Lumpectomies the first 2 times. This time she has to get one breast removed because they can't radiate again… otherwise she would have had another lumpectomy.

    If you are that concerned and want the BMX can you get a 2nd opinion? I know things are a bit different in AU.

  • mannettes
    mannettes Member Posts: 7
    edited September 2014

    My sister-in-law is 7 years cancer free after Her 2. I am Her 2 diagnosed this year and was encouraged to find out she had had the same breast cancer. But like you, I too would like to know of any longer survivors out there. 

  • csardas
    csardas Member Posts: 2
    edited September 2014

    It's my 8 year Cancerversary today.

  • lago
    lago Member Posts: 11,653
    edited September 2014

    Congratulations Alloway. You must be so exited! I hope you are celebrating big time!

  • Gretta
    Gretta Member Posts: 34
    edited September 2014


    Congratulations to you Alloway, really hoping I will be saying that one day.  Way to Go!! xx

    Mannettes, I'm really happy for your sister.  If you hear of any other long term girls would love to know

  • sciencegal
    sciencegal Member Posts: 546
    edited September 2014

    Congrats Alloway- woohoo for you!


  • sherry67
    sherry67 Member Posts: 370
    edited September 2014

    Alloway,

    Big Congrats to you...

  • moderators
    moderators Posts: 8,739
    edited October 2014

    Perjeta Boosts Overall Survival in HER2-Positive Metastatic Breast Cancer September 30, 2014

    Final results from the CLEOPATRA study showed that women diagnosed with HER2-positive metastatic breast cancer who got Perjeta, Herceptin, and Taxotere lived about 1.5 years longer than women who got only Herceptin and Taxotere. Read more...

    The Mods

  • sciencegal
    sciencegal Member Posts: 546
    edited October 2014

    Thank you to our wonderful moderators for posting!


  • LisaH
    LisaH Member Posts: 16
    edited November 2014

    Hello again ladies! Just checking in to say hi and let you guys know that there is always hope.

    This year marks the beginning of my 13th year! November 6th came and went this year and I hardly noticed. Life has a way of keeping us busy. When I started my journey, my children were 8 (third grade) and 5 (kindergarten), now they are 20 (junior in college) and 17 (senior in high school). I feel truly blessed.

    I didn't have herceptin either, just surgery and chemo then tamoxifen.

    Stay strong ladies!

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited November 2014

    LisaH,

    Much the same for me, as you can see in my profile. My surgeon increased my monitoring recommendations due to increased risk for "late" occurrence of cancers for HR positives, to alternating yearly mammo with yearly breast MRI 6 months later. Just had mammo a month ago, doing fine. I too never had Herceptin, because by the time it was standard I was 2 years out and my onc said he didn't think it would be useful for me. I'm sure there are more like you and I but not a lot who post. I did tamoxifen at full dose for 1 year and then at 1/2 dose for 3/4 year. No AI.

    A.A.

  • R27dlsg4
    R27dlsg4 Member Posts: 2
    edited November 2014

    I'm 10 year out and doing fine!

  • denny123
    denny123 Member Posts: 1,570
    edited November 2014

    Woo-Hoo!

    I am in remission (I know that it is temporary). Was on Kadcyla for 12 treatments for mets to nodes behind my sternum and in my supraclavicular area.

    I asked for a break from Kadcyla and if I could go back on Heceptin (I had been on it for 11 years, until I started Kadcyla which is a super-Herceptin).

    So I will start again on Herceptin on Dec 5.

    Still on Faslodex butt-shots.

    I am so excited to be able to go a whole 6 weeks without a chemo (mono-clonal antibody)! Haven't gone that long for 12 years.

    Dec 14 will be the start of my 13th year of Stage 4 BC.

  • lago
    lago Member Posts: 11,653
    edited November 2014

    Way to go Denny123. What a milestone!

    Congrats to you as well R27dlsg4

    May you both continue with many years of Happy Dance.

  • kwagart
    kwagart Member Posts: 24
    edited November 2014

    I am so glad I checked this thread!

    Alloway, you are the first member I have found with triple+ lobular!

    Denny123, your story is inspiring!


  • lkc
    lkc Member Posts: 183
    edited December 2014

    Hi Ladies, I am 9.5 years out from a stage IIIC BC. I was one of the first to get herceptin which was just approved at the time of my dx for BC that was not Stage IV. There are quite alot of "us" non stage IVs out there doing well which will be celebrating 10 yrs later in 2015.

    Denny, Congratulations on your NED status. That's so wonderful.It is possible though that your remission may not be temporary. I have seen other stage IVs with nodal involvement only go off H ( after long term tx with H ) that are off it and doing well.

    For the newbies, please remember what WAS a bad prognosis (her2 pos) has become a much better prognosis thanks to Herceptin and the newer arsenal of HER blockade txs.

  • TTfan
    TTfan Member Posts: 162
    edited December 2014

    Thanks for taking the time for an encouraging post! I had to change oncologists to get Herceptin because the first one didn't think small Her2 tumors should be treated. But after all my providers told me not to be afraid about the Her2 because it used to be terrible but now we had this wonder drug, I freaked out when they later said I couldn't have it. Got a few other opinions and started Taxol/Herceptin yesterday. Chemo is a little scary too, but not as scary as it felt to me to not treat!

    I'm so happy you got it and are doing so well!


  • denny123
    denny123 Member Posts: 1,570
    edited December 2014

    Thanks ladies!

    And thanks also lkc, for the encouraging words. I can't imagine this not being temporary, but I can always hope!

    I got Herceptin today, after being off it for about 9 months. And the nurses gave me a confetti remission party!

    They do this with chemo patients who have had their last treatment, and I always pretended to whine that I would never be off chemo. So 8 nurses lined up, said a little ditty and then "Happy Remission" and threw confetti (really paper punch hole fillers) on me. Funny that I keep finding those little holes on my carpet but don't know where they fell out of....They gave me a plush snuggle blanket and a bag of survivor goodies...called Sachels of Caring...Don't know if they are all over, but ladies in the Pittsburgh PA area make them.

    That was so sweet of them.

    Dec 14 will be the beginning of my 13th year of Stage 4 BC!

    Love to all,

    Denise

  • Tinkerbells
    Tinkerbells Member Posts: 53
    edited May 2015

    Bumping so I can beat back the dementors in my head.

  • lkc
    lkc Member Posts: 183
    edited May 2015

    Hey Ladies. I am now TEN YEARS out from a nasty a** BC, stage IIIC 12 nodes positive, er/pr negative and NO clear margins after my last surgery!!!

    Grateful, beyond words...

  • linnyhopp
    linnyhopp Member Posts: 466
    edited May 2015

    Linda ~ I love your "story!" May NED continue indefinitely for all of us. Hugs...from another Linda

  • footballnut
    footballnut Member Posts: 449
    edited May 2015

    hi all. I've been off the site for awhile however am checking in. I'm nowhere near 10 years as I have 2 rounds of herceptin left then continue tamoxifen which I started taking last oct. My onc told me that I should save for retirement when I asked of I'll be around for awhile. I'm turning 52 thus summer and was diagnosed last feb - triple positive. Despite being clinically free of cancer since my surgery on st paddys day last year I still get stupid thoughts in my head every now and then. Over the wkend I saw a couple of seniors dancing - I suspect that they were in their early 70s. The woman rocked - pumps, great shape, ball of energy.... I started balling my eyes out. My hubby of 32 years asked me what was wrong. I told him that this will never be us. I am so mad at myself for having this even enter my head. So it's good to hear the success stories!!

  • denny123
    denny123 Member Posts: 1,570
    edited May 2015

    Oh darn...after 11 years on Herceptin, my Echo showed my EF was 50%, so I couldn't get it on Friday.

    I am in remission from a recurrence and not happy at all to be on only Faslodex now. I have to have another Echo in a month and my PET will be the beginning of July.

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