Fill Out Your Profile to share more about you. Learn more...

2-Year Her2+ Cancer-free Roll Call

Options
ahdjdbcjdjdbkf
ahdjdbcjdjdbkf Member Posts: 188

Hello Ladies, According to CancerMath.net, our risk goes down if we Her2+ ladies survive 2 years and are cancer-free; or we have NED (No Evidence of Disease). Risk then decreases with each passing year. I'd love to hear from those who hit the 2 year mark and beyond and are still cancer-free. How's it going out there? I have my next check-up with my Oncologist on 5/1 and sincerely hoping for good things from my bloodwork and tumor markers.

«13456

Comments

  • bearcub
    bearcub Member Posts: 59
    edited April 2014
    Options

    I go for my 2 yr. mammogram in May,   DX May 30, 2012.....praying for an all clear..As of now NED.

  • specialk
    specialk Member Posts: 9,226
    edited April 2014
    Options

    So far, so good - NED as of Dec. of 2010 and counting.

  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 188
    edited April 2014
    Options

    SpecialK, that is awesome!!!ThumbsUp

  • specialk
    specialk Member Posts: 9,226
    edited April 2014
    Options

    Thanks!  I agree! There are a bunch of us two year + peeps on the triple pos thread.

  • fightinhrd123
    fightinhrd123 Member Posts: 21
    edited April 2014
    Options

    Six years in May for me, theres lots of us out there :)

  • sheila888
    sheila888 Member Posts: 9,611
    edited April 2014
    Options

    Just reached 9 years mark

    hugs ♥

    Sheila

  • Myleftboob
    Myleftboob Member Posts: 983
    edited April 2014
    Options

    2 years here!

  • Momof2inME
    Momof2inME Member Posts: 249
    edited April 2014
    Options

    2 years plus for me too! Smile

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited April 2014
    Options

    Nearly 5 years BUT how would one know if they don't scan us - still worries me.

  • moderators
    moderators Posts: 8,073
    edited April 2014
    Options

    Congrats on your milestones everyone! And thanks for sharing, this is very inspiring!

    Best,

    The Mods

  • rebzamy
    rebzamy Member Posts: 49
    edited April 2014
    Options

    Diagnosed June 2007 so six years and 10 months since diagnosis!

    Susieq60 I get where you're coming from - I'm a nervous person when it comes to health!

  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 188
    edited April 2014
    Options

    RebzAmy - thanks for this inspirational report. Your diagnosis and treatment regimen are just like mine. I would love to hear from you longer-term ladies if you think you did anything holistic or additional that has helped you stay NED.

  • kathleen1966
    kathleen1966 Member Posts: 67
    edited April 2014
    Options

    almost 4 years for me....

  • Faith316
    Faith316 Member Posts: 1,088
    edited April 2014
    Options

    First diagnosed in April 2008 with IDC and DCIS.  Then, diagnosed in 2009 with IBC while still in treatment for the first diagnosis.  But..... have been NED for 5 years now since that second diagnosis and plan to stay that way!

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited April 2014
    Options

    Diagnosed in December 2011. Chemo and 1 year of Herceptin and so far it hasn't come back :-)

    Jenn

  • rebzamy
    rebzamy Member Posts: 49
    edited April 2014
    Options

    Hi Maria

    Yes we have/had a very similar diagnosis and I really remember wanting to hear for others who were later on down the line like you do - it really helps. Trying to think if I did anything particularly holistic etc - I think what I did was surround myself with positive people, hearing positive things, having special aromatherapy massages at cancer centres and various other treatments and just generally relaxing, chilling, doing a bit of exercise and trying to eat healthily.

  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 188
    edited April 2014
    Options

    Did anyone make any major life changes? I more or less have been going back gradually to life as I know it and as I previously enjoyed it. A lot of times I feel like I should be changing something - like the life that caused cancer could cause it again. I did make some changes - stopped using anti-perspirant, got my mercury removed by a holistic dentist, have cut my alcohol and meat consumption both in about half, have cut my candy by 75%, and I'm taking more vitamin-D.

  • LizA17
    LizA17 Member Posts: 102
    edited April 2014
    Options

    yay for all of you!! Love reading these posts!!

  • lkc
    lkc Member Posts: 180
    edited April 2014
    Options

    I'll be celebrating 9 years ( in 2 weeks ) of a nasty a** stage IIIC dx.  All'sHappy well and livin LARGE everyday!

  • girlstrong
    girlstrong Member Posts: 299
    edited April 2014
    Options


    I love this thread...I am 9 months out from dx but still consider myself a survivor.  I think we start surviving the day we learn we have a "C" diagnoses.  Some of the holistic things I have done is take daily Vitamin D, no alcohol since diagnoses, daily baby aspirin, exercise 4-5 times/week, daily cinnamon sprinkled on lots of stuff, daily huge serving of broccoli and other veggies, just bought some curcumin and may begin that soon too. Other ideas are greatly appreciated.  Blessings to all... 

  • specialk
    specialk Member Posts: 9,226
    edited April 2014
    Options

    I struggled with weight gain from steroids during chemo and Femara/Arimidex, and numerous surgeries that derailed my exercise plans.  I had been walking 5 miles daily and eating 1200 calories and could not take off any weight.  As of January of this year I have completely eliminated dairy, soy (was already pretty much eliminating those two), corn, gluten (also had been limiting this to see if joint pain improved), eggs, sugar, and peanuts.  Without exercise I have lost 20 lbs. and am now back down to pre-diagnosis weight, and because of less body-wide inflammation I have reduced joint pain and my LE is very much better.  Maintaining a low BMI, weight bearing exercise, supplementation with calcium and vitamin D, low-dose aspirin every other day, probiotics, Vit. B-12, B-6, C, Acetyl L-Carnitine, organic fruits/vegetables, grass-fed or pasture raised protein, also consume almost no alcohol at all - one drink for a special occasion, but that was the case before diagnosis also.

  • flatnfab54
    flatnfab54 Member Posts: 13
    edited April 2014
    Options

    Almost 6 years for me

  • codi10
    codi10 Member Posts: 15
    edited April 2014
    Options

    I was one of the lucky ones who participated in the "light " chemo trial of only Taxol combined with Herceptin through Dana Farber in Boston. The results were published last December at the San Antonio Breast Symposium 2013. The group (there were 406 of us) as a whole were 98.7% cancer free 3.8 years later. It will be 5 yrs. for me this year & some participants are more than 6 years out!!! I was very grateful to have been part of this trial.

  • suemed8749
    suemed8749 Member Posts: 210
    edited April 2014
    Options

    Diagnosed six years ago - since then, two daughters' weddings, 1 1/2 granddaughters, retirement, some great travel experiences, last kid off to college, lots of love and laughter. Next onc appointment: February 2015!

  • footballnut
    footballnut Member Posts: 449
    edited April 2014
    Options

    hi all!  Ure all an inspiration!  I'm just getting started with my treatment next wed and just can't get over this!  I am so frustrated and still in shock about this but am thankful for all of you!  I was told byy surgeon that 20 years ago her2+ was a death sentence so it was good to hear from my MO that he is of the opinion that there is now NED and that he expects me to have a long life. So while I'm not even close to 2 years I hope to be joining all of you to celebrate when it's my turn!!  For now I'll just celebrate for all of you!!

  • Fitz33
    Fitz33 Member Posts: 123
    edited April 2014
    Options

    Hi all and congratulations.  I am now 3 years and 7 months since diagnosis.  I feel fine and have been on Anastrazole for 2-1/2 years now.  I told my ONC that I knew I would be on it for 10 years rather than 5 since I've heard so much about that but she said the studies won't be in until closer to my 5 year mark.  Interesting.  It would be nice to be off of it for its SE at the 5 yr. mark but I can't complain as its keeping me alive, well, along with the Tykerb, Herceptin, Taxotere, Carboplatin and Radiation that I had.  I am now on a 9 month followup schedule with my ONC rather than 6 months (still 6 months with the BC surgeon though) since she thinks I'm doing so well.  I'm just so grateful I've made it to this point.  I don't know what tomorrow holds but today is good and I'll take that.

  • Caya
    Caya Member Posts: 46
    edited April 2014
    Options

    I am 7 1/2 years out - diagnosed in October 2006 - went in for a breast reduction, came out with breast cancer.  I had a clean mammo and u/s three months beforehand.  Super shock - had just turned 48, no family history, was in good shape and had been exercising regularly for the 2 years previous to the diagnosis.  Told my onc. to give me the hardest treatment possible - After MRM (so much for the boob reduction, bye bye boob 8 weeks later) Did FEC x 3, then Taxotere x 3, followed by the year of Herceptin.  2.5 years of Tamoxifen, 2.5 years of Femara.  Developed mild lymphodema. Then osteoporosis, had a Reclast infusion, 18 months later back to just osteopania. Had a bladder lift and ooph in Oct. 2013.  Gained about 40 lbs. from the Tamox and Femara - working hard now to get it off, down about 20.

    My onc. said that for me, 5 years of anti-estrogen drugs are enough.  July 2014 will mark 2 years that I will be off them, will revisit this issue when i see my onc. this summer.  Would prefer to stay off them, as I feel so much better (more energy, less aches and pains, able to lose weight etc.) but would go back on if necessary.

  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 188
    edited April 2014
    Options

    I have anxiety over not folowing the perfect diet and exercise regime and the fact hat I packed on about 12 lbs during all of this. When I see the picture of have on my avatar I'm pretty jealous of my former self. That was before the 12 lbs I carry today. I do believe that over-time when my energy goes up, I have fewer medical appointments, and more things get behind me that I will find my way more to how I want to be in that area.

  • footballnut
    footballnut Member Posts: 449
    edited April 2014
    Options

    I saw my MO today and discussed weight gain. He said that it's probable that I will gain 5-10 pounds and it's funny how this concerns me so much. I've worked very hard to try to maintain my weight but what will be will be

    My MO said that he is of the opinion that I have an 80% chance of the cancer not returning but we shall see. He is the chief of oncology at the hospital and a very well respected dr so his opinion gives me strength

    I had a port inserted today which stings a bit and am feeling tired from the sedative so off I go to nap for a bit

    Take care all !

  • sydneybased
    sydneybased Member Posts: 25
    edited April 2014
    Options

    I'm 3.5 years since diagnosis. 

    I've never really got my head around the continuing risk information. I've heard:

    - most HER2 recurrences happen within the first 2 years

    - most HER2 recurrences happen within the first 3 years

    - most recurrences in general happen within the first 5 years

    - the risk of recurring never stops with ER/PR positive

    I usually ask my oncologist if I've reached a milestone - at 2 years, at 3 years, but the reply has always been "there are no milestones".

    If anyone could clarify what the current robust evidence says about HER2 recurrence risk, that would be enormously helpful.