Anyone er+, pr+ and HER2 +

Options
GrammyNancy
GrammyNancy Member Posts: 666
edited June 2014 in HER2+ (Positive) Breast Cancer
I was diagnosed with Lobular and ductal that was both er+, pr+ and HER2+. Does anyone have experience they can share with this dx.

I have not seen many post on this and would love to hear from anyone with this dx.

Thank you,
Nancy
· Share on FacebookShare on Twitter
«1

Comments

  • stacyofhavertown
    stacyofhavertown Member Posts: 10
    edited March 2007
    That would be me. I was diagnosed in Dec 2002. I like to think of myself as an overachiever

    Stacy
    · Share on FacebookShare on Twitter
  • Margerie
    Margerie Member Posts: 526
    edited March 2007
    I am also triple +, but IDC + DCIS. What does it mean? Mixed bag- good to be er/pr+ because you can do hormone therapy. But hormone therapy is no walk in the park. Not as good to be Her2+, because this indicates an aggressive cancer. But like some say, what invasive cancer isn't? Luckily now there are targeted therapies for Her2 (herceptin, tykerb) that are turning around the stats. Since they are not chemo, side effects are relatively minimal.

    I understand only half of her2+ are also er+, so we are about 10% of the breast cancer bunch.

    I am 1.5 years from diagnosis (Stage III) and doing very well! It is a lot of treatment, I am currently on herceptin and Arimidex, but I am healing and living every day.

    Best wishes to you and hi Stacey!
    · Share on FacebookShare on Twitter
  • Mmisha
    Mmisha Member Posts: 12
    edited March 2007

    I was diagnosed in October 2006 with triple positive IDC and DCIS at 35 years old (2 nodes+) Keeping my fingers crossed!

    · Share on FacebookShare on Twitter
  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited March 2007
    Waving my hands!! Triple +++ here. 100% er/pr+ and Her2+

    What it means? we have a variety of tools to kick some cancer butt!

    Janis
    2 years out.
    · Share on FacebookShare on Twitter
  • Sigma
    Sigma Member Posts: 1
    edited March 2007

    I was diagnosed with IDC in Jan, triple positive, but grade 1/stage 1. Now they are asking for all new tests to confirm this unusual occurrence. Her2/neu+, I have learned, is unusual in such early stage cancers.

    · Share on FacebookShare on Twitter
  • abbyglp
    abbyglp Member Posts: 417
    edited March 2007
    Count me in, I am ER+,PR+,HER2+,Stage3 IDC. My dx says moderate ifiltrating, Has anyone else had the word moderate infiltrating diagnosis? I guess the pathologist uses that instead of a grade like I have read most women use on these boards. So I am assuming I must be something like a grade 1 or 2. I had masectomy in may 06, 4DD A/C, 12 taxol,so far 6th month of herceptin, and I just had my 28th rad. I had to stop rads due to bad skin reaction. I am supose to have 8 more boosts, but I do not think I will be able to have them. The rad onc says that I did finish the most important part, the whole breast rads. So I will find out next week if or when I will start tamoxifen.
    Hugs abby
    · Share on FacebookShare on Twitter
  • sparklegirl
    sparklegirl Member Posts: 14
    edited March 2007
    I am triple positive, too.

    RTA - I think the reason your doc wants to retest your Her2+++ status is because of the grade of your cancer not the stage (I am stage 1 and Her2+++) Usually, Her2+++ cancer is grade 3 not grade 1. But nothing is black and white with cancer.

    Karen
    · Share on FacebookShare on Twitter
  • Caya
    Caya Member Posts: 971
    edited March 2007
    I'm triple positive also - ER(90%), PR(50%) and of course Her2+ - Stage 1, grade 2, node negative - discovered by my plastic surgeon while undergoing a breast reduction on Oct. 16, 2006 - pathology came back Oct. 26, 2007 - a big shock, after having had a mammogram and breast ultrasound on June 29, 2006 - showing nothing (lol). My oncologist is always astounded when he sees me, says in over 5,000 women he's treated, I'm the first patient he's had with BC discovered in a breast reduction. Lucky me!! However it was caught early, and I fully intend to kick cancer butt!!
    Caya in Canada
    · Share on FacebookShare on Twitter
  • cajunmeh
    cajunmeh Member Posts: 2
    edited March 2007

    My first time joining this. I have been reading this for months and have gotten so much from all of you. I had my first herceptin treatment 3-9-7. Had some chills but really not much. I start HT&C 3-16-7, any tips?

    · Share on FacebookShare on Twitter
  • GrammyNancy
    GrammyNancy Member Posts: 666
    edited March 2007

    Looks like our group is small. I've heard figures like only 10% or less our er+/pr+ and HER2+..the good news is we have drugs that help and that we are a very elite group! I'm also have lobular which again is not the norm. Oh well. Just started chemo (TAC every 3weeks x6 and then begin my Herceptrin and armidex). I heard yesterday that they come out with a new drug for HER2 that shows good promise.

    · Share on FacebookShare on Twitter
  • tropicmom
    tropicmom Member Posts: 88
    edited March 2007
    I am also triple positive/ stage IV.
    I am on weekly herceptin and navelbine, just finished #3. Doing well so far. Will have scans in about 5 weeks.
    · Share on FacebookShare on Twitter
  • Scout
    Scout Member Posts: 76
    edited March 2007

    Count me in too. I finished Chemo last year and am on Arimidex. I had Herceptin for a year...I hope that was enough!

    · Share on FacebookShare on Twitter
  • PNWKaren
    PNWKaren Member Posts: 88
    edited March 2007

    Count me in on the triple pos and lobular too--talk about being on the short end of the numbers. I'm premenopausal also. Three tumors, the largest of which was 3.5 cm, and 3/5 nodes positive. My medical oncologist told me this was Stage 2 but the radiation oncologist said, based on total tumor load, I was borderline Stage 3. That was depressing to hear. Double mastectomy, 4 rounds of DD A/C followed by 11 rounds of weekly Taxol and Herceptin--was supposed to do twelve but had enough side effects that the onc and I agreed to stop one short. I'm continuing the Herceptin every three weeks for a year. Now doing rads, 28 + 5 boosts, then will start Tamoxifen while I contemplate a possible oophorectomy and AIs. I'm very hopeful for my future--no known mets and doing everything in my power to keep it that way. I've got a six month old baby (the last of six children)to get raised! I'm a big believer in complementary therapies, read extensively, and take a large volume of supplements each day.

    · Share on FacebookShare on Twitter
  • talbrig13
    talbrig13 Member Posts: 488
    edited March 2007

    I am also triple positive. Diagnosed in Dec 06 with IDC & DCIS. 1.2 cm, nodes negative, stage 1, grade 3. Had lumpectomy and will have rads after chemo...doing carboplatin, taxotere and herceptin every 2 weeks x 10...had 3 so far, 7 to go, then rads and herceptin every three weeks for a year, will take femara. 47 years old and post menopausal. Feel glad to have herceptin available though.

    · Share on FacebookShare on Twitter
  • sassyone
    sassyone Member Posts: 26
    edited March 2007

    Me too, triple positive. Two years NED and counting!!

    · Share on FacebookShare on Twitter
  • ERS2006
    ERS2006 Member Posts: 40
    edited March 2007
    Hi Ladies
    Count me in...ER95% PR85% HER-2/NEU3+...1.5 cm grade 3...had right breast mastectomy and 4 rounds of taxotere/cytoxan w/9 more months of Herceptin and soon to start Tamoxifen...How bad is it to be triple positive??? What else can we do to keep this from coming back...What are our percentages of this coming back or should I say, will we live until we are 90?
    · Share on FacebookShare on Twitter
  • valerie1
    valerie1 Member Posts: 3
    edited March 2007
    Hi Nancy, Looks like I am part of this elite group also...Pr+Er+Her2Neu+ I have lobular with some ductal features??Path said grade I but Onc said acting like grade II because of the Her2Neu. Tumor only 1.2cm but two nodes affected. Nothing fixed. I am doing neo-adjuvant Taxol every three weeks and Herceptin weekly. I feel great after only three treatments. I think the prognosis is pretty good. Now that we have herceptin and tykerb. Looking forward to a long life with my wonderful family.
    I believe the Lord is healing me every day!
    Val
    · Share on FacebookShare on Twitter
  • vickib
    vickib Member Posts: 1,184
    edited March 2007
    Me too! Scheduled to finsish Herceptin 05/07 and taking Femera for the next 4.5 years.

    Stg 3B
    · Share on FacebookShare on Twitter
  • jan125
    jan125 Member Posts: 411
    edited March 2007
    I am triple positive too! Is this my silver lining to my stage 4 cloud?
    I like to think it gives me more options to kill those nasty cancer cells!!!!
    I am doing well. Had mets on dx to bone and liver. They only see a spot left on liver (seen in CT with contrast)that is getting smaller. Scar tissue perhaps? Maybe the liver is regenerating and remaining cancer cells are dying? Maybe there are none left?
    My PET/CT is clear so I am going with scar tissue and NED.
    My onc. doesn't care either way because it is shrinking!!
    · Share on FacebookShare on Twitter
  • SheriH
    SheriH Member Posts: 785
    edited March 2007

    Triple positive, IDC tumor 5 cm and 5 pos nodes, and 2 years NED!

    · Share on FacebookShare on Twitter
  • tropicmom
    tropicmom Member Posts: 88
    edited March 2007
    HI, I'm on navelbine and herceptin and just finished #3 weekly. I have had cramping in my stomach and lower abdomen since then (Wednesday) that varies in severity,though not unbearable. Has anyone had this? I don't think it's constipation. I was thinking it might be the herceptin or the chemo. Any suggestions?
    Thanks
    · Share on FacebookShare on Twitter
  • abbyglp
    abbyglp Member Posts: 417
    edited March 2007
    Hi, I finished chemo in the beging of december and continued on the herceptin, I was taken off the herceptin for about 4 weeks due to heart ejection fraction went down and I started up again about 4 weeks ago and also noticed some cramping, I was told that herceptin can cause loose stools but I have only had the cramping that comes and goes. We might be lucky to have just the cramps and not the diarhea but if it gets to uncomftorable I would ask your onc. Mine is just mild and doable.
    hugs abby
    · Share on FacebookShare on Twitter
  • Caya
    Caya Member Posts: 971
    edited March 2007
    hello fellow triple +s - it's great to hear from gals like Sherndon and sassyone, who are a few years out and NED - jan125 - good for you, sounds like the Herceptin is doing its magic. I think that the ER/PR+ is a silver lining, more treatment options - you'll see ladies, we are the pioneers of HER 2neu+ studies - the stats on us in 5, 10, 15 years+ will be very good (the HERA trial results were amazing!!) - I just feel it - be positive - Herceptin is a magic bullet, and Tykerb will be too.
    caya
    · Share on FacebookShare on Twitter
  • terrirites
    terrirites Member Posts: 16
    edited March 2007
    Hi Everyone,

    I'm another candidate for this group. My 1.5 cm was grade 3 ER 10% and PR 90% and HER2+. I had no nodes but my Dr said HER2+ can be equal in severity to 1 pos node. Anyone else hear anything like that?

    I just started TCH (Taxotere, Carboplatin, Herceptin) on 3/2 and will total 6 rounds. Then I'll be doing 6 wks RADS then hopefully hyst and ooph. followed by AI.

    Not only is our kind of BC on the rare side, I'm also under 40 (dx at 36) so I'm like a 1% girl....

    Couldn't I have just won the lottery instead???

    So far chemo is not fun, but doable. I understand my regimen isn't the most common. My Dr. felt that while my heart is good, my fam history of heart disease could be a problem on down the road w other treatments combined with Herceptin. I understand the Adriamycin treatment w/ Herceptin has some better results in terms or reoccurence, but can be tough on the heart. Treatment #2 is on the 23rd and I'm already dreading it. I was just starting to feel like I was coming back to life! And darn if I can't get the dumb period to go away. Have large fibroid causing so much trouble... between that and being ER+ I'm actually looking FORWARD to hyst and ooph!

    Anyone else doing the TCH?

    Happy belated St. Patty's day!
    · Share on FacebookShare on Twitter
  • Caya
    Caya Member Posts: 971
    edited March 2007
    Hi Terri,

    I am also no nodes ( 16 tested), and my onc. also said we have to treat Her2+ as being 1 - 3 nodes positive - but in the same breath told me that now with Herceptin I have a better prognosis.
    I am on FEC - T - this is a common chemo regime here in Canada - I have finished the 3 rounds of FEC, starting 3 round of T (Taxotere) on March 29th, if all goes as scheduled I will be finished chemo on May 10th. After about a month's break I will start Herceptin, every 3 weeks for a year.

    All the best
    Caya
    · Share on FacebookShare on Twitter
  • terrirites
    terrirites Member Posts: 16
    edited March 2007
    Hi Caya,
    Looks like we are in a similar situation.

    Do you think that the HER2 has any effect on staging, since they consider it equal to nodal involvement? Not that it really matters anyway, right?

    Thank goodness for that Herceptin. I read recently that Herceptin still usually isn't covered by ins in the UK for Early Stage BC. Kylie Minogue is involved with a group lobbying to get it covered... I understand Herceptin can cost upwards of $70,000! Only recently was it approved in the US by the FDA for early stage. Looks like we all need to find the advocate inside of each of us for our sisters in the UK!

    My last chemo should be June 15, God willing no complications, then Herceptin to finish up the year.

    Hope all goes well for you!
    Terri
    · Share on FacebookShare on Twitter
  • BethNY
    BethNY Member Posts: 2,710
    edited March 2008
    Terri I think its good that you're Dr. is on top of your family's heart history, and is treating your cancer accordingly...
    While Her2+ cancer was once considered more aggressive, now that Herceptin is on the market it's the best security blanket against cancer we could ever hope for.
    I know what you mean about winning the lotto (I'm triple + and diagnosed at age 26)--unfortunately for you and me, we played the wrong game.
    Shouldn't we at least get a parting gift, say, a mercedes or something with diamonds?
    I know- the real gift is my life...blah blah blah. As happy as I am about putting 30 cancer free candles on my cake this year, I still would've liked a car to go along with that herceptin.
    · Share on FacebookShare on Twitter
  • dawn16
    dawn16 Member Posts: 281
    edited March 2007
    Another triple positive here. Just celebrated my one year anniversary this weekend. NED!!!! Hoping to stay that way. Right now, Im on Tamoxifen and getting herceptin every three weeks. So far so good.

    Dawn
    · Share on FacebookShare on Twitter
  • talbrig13
    talbrig13 Member Posts: 488
    edited March 2007
    Terri...
    your story is about like mine (and I am a Terry too). I am on Carboplatin, Taxotere, and Herceptin. 3 of 10 biweekly treatments in...started 2/8/07. I was 1.2 cm IDC & DCIS, no nodes, stage 1, grade 3, triple positive. Same heart story in my family which is why we opted not to do AC. I have been feeling pretty good, except for queasiness. My hair is really thinning too.
    Wish you the best!
    · Share on FacebookShare on Twitter
  • carol1282
    carol1282 Member Posts: 2
    edited March 2007
    HI all , yes another one +++. Two years down the track downunder. Chemo, radiation, Herceptin for one year and also on Arimidex and yes in New Zealand herceptin not funded - cost me $95,000 for the herceptin but then I'm still here and that gotta be good. Had very stiff and sore joints but that seems to be improving lately - not sure if armidex or herceptin. Feeling good, a bit overweight but was great to make the 2 year anniversary.
    My thoughts with you all - be positive and laugh as much as you can with your family and friends. Its gotta be good for you.
    · Share on FacebookShare on Twitter

Categories