Can we do a Her2 roll call?

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  • bjetal
    bjetal Member Posts: 39
    edited July 2007
    Hi! Haven't posted here in a long time.

    DX July 8, 2005 with bone mets when my hip broke
    Doc's office and we didn't notice I was HER2+ until August, 2006 - long story; started herceptin and chemo immediately (taxol, carboplatin)
    Feb 2006 - scans show major improvement; moved to just herceptin and lupron and zometa. Primary continues to show significant shrinkage
    May 2006 - brain mets discovered; have whole brain radiation

    Currently I'm waiting to see where everything stands. I have a brain MRI next week and CT scans. I'm pretty confident the scans will show the herceptin is still working in my body, but concerned about the brain MRI. Once we have all the results then we'll make treatment decisions. Herceptin, though, has been a phenomenal drug for me. Just wish it crossed the blood/brain barrier.

    I am thrilled with all the good reports. For all of you for whom this is appropriate, may God continue to keep you strong and healthy.

    Grace and peace,
    Jenny M
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  • emnat
    emnat Member Posts: 1
    edited July 2007
    Stage I HER2+
    Whe given the choice I opted out of Herceptin due to the rigerous chemo schedule and stage of cancer. I feel confident with my decision...hope I'm right!
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  • atdec05
    atdec05 Member Posts: 37
    edited July 2007
    Stage 1 er/pr-/her2+ 9/2005, node negative
    mastectomy, then 4 DD AC + Herceptin
    1/2007 on last month of herceptin got recurrence to chest wall
    finished radiation 4/07 and started 12 weekly Taxol/Herceptin

    Hoping the Taxol/Herceptin combo will do the trick. I think most women got Taxol even at stage 1

    - Anna
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  • skeetur
    skeetur Member Posts: 65
    edited July 2007
    12/04/2006 Biopsy - diagnosed with DCIS
    12/27/2006 Lumpectomy IDC found HER2+, ER+/PR+ (2 foci largest is .3 cm amid DCIS), SNB negative, margins not clear
    01/23/2007 Re-excision lumpectomy for residual DCIS, margins not clear
    03/02/2007 Bilateral mastectomies w/ expander implants - no more cancer or DCIS found
    05/04/2007 BRCA1/BRCA2 negative
    06/08/2007 Bone scan/CT scan - nothing seen except for cyst on right ovary which will be checked via ultrasound in September
    06/27/2007 Expander swapout surgery - silicon implants

    No hormones, radiation or chemotherapy including herceptin recommended by oncologist due to tiny tumor size.
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  • esserbre
    esserbre Member Posts: 82
    edited July 2007
    Dx 07/06. Stage 2 - 1 node positive, mastectomy for two lumps, Her2 and Estrogen positive.
    AC & Taxol 10/06 to 04/07. Then rads to left breast area. On herceptin since 04/07. Got put on HOLD today because of heart wall motion too low -- don't know numbers. What the heck is NED?
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  • janet11
    janet11 Member Posts: 262
    edited July 2007
    NED: No Evidence of Disease.

    Janet
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2007
    Hi, dx 1/30/05, IIb. 16 weeks DD chemo, rite mast. no rads. Finished Herceptin in Nov. 06, NED as of now. Was due for 6 mo. PET but ins. denied so will go 1 yr.(unless I "feel funny" in which case the doc said she would order as diagnostic instead of followup.) But feel pretty good. Have the arimidex aches as I call them. Jenene
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  • HappyTrisha
    HappyTrisha Member Posts: 614
    edited July 2007
    Diagnosed Dec.2003

    Stage 2B - ER/PR/HER+, 1 tumor 2.4 cm and three trailers (smaller tumors that are part of the same tumor)
    1 node plus one with micromets

    Herceptin and navelbine 12 weeks prior to surgery

    Mastectomy and then prophylactic mast 1 1/2 years later. My choice, genetic test was negative.

    Other chemo and radiation

    Finished herceptin June 2005.

    Reconstruction (bilateral lat.dorsi flaps plus implants, Jan. 2007)


    NED
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  • Pharmmom
    Pharmmom Member Posts: 300
    edited July 2007

    Diagnosed Oct 2002. Mastectomy right breast. 17 nodes taken 2 positive with micromet to a 3rd. Reconstruction TRAM. 4 A/C 4 Taxotere. No rads. Stage 2A. Tamoxifen currently on Arimidex. Going strong 5 years this fall! Wahoo!!!!!!!!!!!!!!!!!!!!!!!!!

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  • lkc
    lkc Member Posts: 1,203
    edited July 2007
    Hi all,
    Dxed May 30, 2005 IIIC 12 out of 14 pos nodes.
    On Herceptin X 18 mos( my onc down here hasn't decided when to take me off ). PET last week ,NED.


    Linda
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  • cindbo
    cindbo Member Posts: 67
    edited July 2007
    DX 10-18-06 bilaterarl mastectomy November 06, chemo DD AC/T plus one round TC-followed by taxol/herceptin, chemo emded April, May started 33 rads, ended July 2nd, hercept Q3 until Feb, started tamoxifen, considering hysterectomy in the fall..

    Stage IIA/B, ER/PR/HER2 pos, grade 3, 3 nodes micro involved
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  • Denny123
    Denny123 Member Posts: 1,886
    edited July 2007
    DX-Dec 2002,
    Herceptin for life, in remission for 2 1/2 years for liver mets. Last Herceptin 7/6.
    Thus NED
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  • LisaH
    LisaH Member Posts: 25
    edited July 2007
    Dx 10/02
    Stage 1, grade 2 IDC 1.4 cm. 0/11 nodes
    ER+/PR+/Her2+++
    Left mastectomy
    4 AC completed 2/14/03
    Tamoxifen until 2/08
    3 months shy of 5 year milestone....NED!

    No herceptin for me, not offered to stage 1 node- "back then"!
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  • skbentley63
    skbentley63 Member Posts: 2
    edited July 2007

    finished august 2006

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  • josied0
    josied0 Member Posts: 66
    edited July 2007
    Dx 12/05, stage 2A
    IDC, er/pr negative HER2+3.8
    DX at 39 3 weeks before 40
    Having bilateral reconstruction 8/22
    4 x A/C, 4 taxotere/herceptin
    Herceptin for a year, last herceptin 6/4/07
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  • kimf
    kimf Member Posts: 334
    edited July 2007
    DX 12/04, IIIC 15+ nodes, finished Herceptin 5/5/06 - Ned is still my best friend.
    Kim
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  • Hope_M
    Hope_M Member Posts: 261
    edited July 2007
    I think that I am one of the longer-term Herceptin gals to respond so far.

    DX: Stage 3 in May, 2003 (Highly Her2+; 4 pos. nodes; 8 X 9 cm tumor)

    TX: Mastectomy
    TAC x 6
    25 Rads
    Herceptin (as experimental drug at that time for stg.3) weekly for one year.

    NED: Still NED since initial surgery (June '03)

    Going for my five year anniversary next spring . . .

    Hope M.
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  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited July 2007

    Dx July 2006, Her2,ER+,8/20 Nodes,4ACT,12 Taxol,Rads,started Herceptin Dec 26 (Merry Christmas-bah humbug),so far so good.

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  • nagem
    nagem Member Posts: 353
    edited July 2007

    That's great news! Next month I celebrate two years since my diagnosis. So far so good. But five years—that's excellent!

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  • sparklegirl
    sparklegirl Member Posts: 14
    edited July 2007
    Stage 1, SNB all negative (5 nodes removed), grade 3, Her2+++, er/pr+. Did DD AC & T, followed by 34 rads, a year of Herceptin and Aromasin for 5 years.

    I am 21/2 years from dx and 1 year from end of Herceptin treatment.

    I feel very blessed.

    Karen
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  • Chelee
    Chelee Member Posts: 513
    edited July 2007
    Hope M., There are so MANY encouraging posts here and I am thrilled to see a long timer such as yourself. Going on FIVE years. Awesome. I for one like to THANK YOU long timers for STICKING around the boards to continue to share your stories with us and give us the hope and encouragment we so need. My onc, surgeons and doctors gave me no hope..absolutely nothing...so threads like this one and posts from people like you mean so MUCH to me and I am sure so many others. I see you and NED make a really great couple...may you two live happily ever after.

    Thanks again!

    Chelee
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  • Hope_M
    Hope_M Member Posts: 261
    edited July 2007
    Hey, Chelee-
    You're practically a long-termer yourself (at least in the context of these boards)! I took some time off, but am back, because these boards have always been there for me, no matter how silly the question or what the hour of the day. And I do know that people need to have hope and to hear stories of those of us whose cancer looked bad and yet still we are here (and NED).

    Hugs and on with the roll call!

    Hope M.
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  • bluewillow
    bluewillow Member Posts: 779
    edited August 2007
    Thank you to everyone for your encouraging replies. I am 51 and have just been dx'd with Stage 1, Her2 pos/ER and PR neg, lumpectomy plus re-excision with clear margins, SNB with negative nodes, will start chemo next month, plus Herceptin, plus rads. My doctor has given me very little encouragement for beating this because of the Her2 pos. I have been totally down and depressed and feeling hopeless, but you ladies have helped me a lot. I hope to be reporting in NED when all my treatments are done! I am scared and just praying to get through all this, but don't want to waste one minute of my life either. Take care everyone!

    Mary Jo
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  • rxt774
    rxt774 Member Posts: 15
    edited August 2007
    BlueWillow, I too am recently diagnosed Stage II with 1-4 Pos nodes out of 10 (depending on which DR you talk to) Being node negative I'm surprised at Stage I they would put you on Chemo, and also give you little to no encouragement on chances of survival. I'm having DD ACx4, Taxol x4, Herceptin for 1YR, plus rads. One of my Stanford DR thinks by all this treatment its like they are throwing a grenade at a fly! If you don't have IDC, but DCIS your chances are 100%!
    Every DR I've met has said with this treatment that they predict I'll be dancing with NED for a long long time. And while I'm no DR, the past 6 weeks has forced me to become informed, haha, and I predict you'll be dancing with NED too!

    Good Luck!
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  • bluewillow
    bluewillow Member Posts: 779
    edited August 2007
    Hi Hope!

    Thank you SO MUCH for your reply-- I've been grasping desperately for encouragement and I certainly found it in your post. I do indeed have IDC, though I was initially dx'd with DCIS, the final path confirmed it was invasive but very small. It sounds like you are having the same identical treatment regimen as I will be having, except I am having Taxotere x 4 - or is that the same as Taxol? Again, thank you and I wish you the best on your treatment and please do let us know how you are doing. Please feel free to send me a personal message any time!

    Mary Jo
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  • jan125
    jan125 Member Posts: 411
    edited August 2007
    Taxotere and Taxol are in the same family of drugs. Called the "taxanes." You will become familiar with the lingo as time goes on. I feel like an amature doctor.

    I think taxol is a little newer.

    Jan
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  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited September 2007
    NED
    IDC T1c, some DCIS
    CAF x 6, dose definitely UNdense (4 weeks apart due to refusal of blood boosters)
    IMRT rads w/boost
    1 3/4 yr tamoxifen
    Refused Herceptin

    Would like to hear from others who have not done Herceptin, or those who did not do chemo but may be doing Herceptin.

    AlaskaAngel
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  • Chelee
    Chelee Member Posts: 513
    edited September 2007
    Hope41, I am curious why your doctors have different opinions on how many positive nodes you have? Why do they say 1 to 4? Was there something questionable about your path report? Isn't there anyway they can find out for sure? Were these surgeons, onc's or what?

    Chelee
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  • chemomom
    chemomom Member Posts: 171
    edited September 2007
    Hi ladies. Thought I mught join in. First, what does NED stand for? I have seen it so many times, but can't figure out the acronym. maybe i am too new to this whole BC thing and haven't gotten to even thinking about NED yet. i was just diagnosed mid-July '07.

    Also- does anyone know if there's any way to tell about node involvement after chemo has started? I had mammo, ultrasound and biopsy pre-chemo, but nothing to check nodes. They make such a huge difference in outcome, i hate thinking I may never know if I had some positive or not. When I have my mastectomy, will there be any residual evidence if nodes had been involved? (the herceptin seems to be working wonders after just 2 tx's, so I think any spread would have been taken care of before surgery... hopefully). Angie
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  • HappyTrisha
    HappyTrisha Member Posts: 614
    edited September 2007
    Actually I don't know that there is any hard and fast evidence saying that node involvement makes a "huge difference" in outcome. I've seen people who were node negative go to stage 4 and people who were node positive still in remission after a long time.


    If you were just diagnosed and had any node involvement I would think that it is possible there would still be evidence (though I am not a doctor so don't know for sure). Why not ask to have a sentinel node biopsy now?
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