Have you had a recurrence after Herceptin or are you still NED?

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Mitch56036
Mitch56036 Member Posts: 16

Hi all,

Diag 2/05 Stage IIB Her2+ ER/PR+ -Her2+  Finished 12 months of Herceptin November 06.  NED to date but just wondered if there are those out there who have had a recurrence and how their treatment is going.  No further stats have been released to date regarding the Herceptin trials that I know of and I'm curious to hear from others who have had Herceptin for early stage bc.

Cheers and all the best for the new year.

Mitch

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Comments

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited January 2009

    Hi Mitch -- I understand why you are asking, but remember these are not mutually exclusive. No Herceptin and no recurrence for me.

  • lexislove
    lexislove Member Posts: 2,645
    edited January 2009

    Hi Mitch,

    This is a good question. You can see my signature down below, and I finished my Herceptin in Nov 2008. I was very happy about getting that port out but at the same time very nervous because NOW I was finished with everything. I, like yourself have read so many great things about Herceptin but I still had that fear what if?

    Make a long story short, I went to my second opinion oncologist. He is head of the oncology unit at one of the major hospitals here in B.C. ( I'm in Canada). He then told me that before Herceptin Her2 + was a "stuborn" disease and in some cases difficult to treat. But NOW, with Herceptin it has completely reversed. He said that it is the disease with the better prognosis and that in his years of giving Herceptin he has seen very, very few woman with recurrences. He then told me to have a Merry Xmas. I left that appointment with hope.  Herceptin is still "new" and I think all of us Her2+ woman would like to see more stats. But for the time being, I see that you have just past the 2 year mark from time treatment has ended. My docs say that the first 12-24 months are the most critical. You have passed that...time to celebrate! Laughing

  • TammyLou
    TammyLou Member Posts: 740
    edited January 2009

    Diagnosed about the same time you were (January 2005)

    So far, so good.

    Tammy Lou

  • LittleFlower
    LittleFlower Member Posts: 405
    edited January 2009

    Diagnosed june 2006- stage 3a  finished treatment october 07.... still ok as far as i know.

    Still scared out of my mind every now and then, but still here :)

    Lexislove:  When i got my port out i was scared too.  It's just a scary time,  but the last year being off treatment has gone very quickly!  i have many fears but quality of life increased greatly when i stopped going to the hospital every week!   You'll see.  Scary yes, but you're done with treatment and life will get better!

    LittleFLower

  • Zzap
    Zzap Member Posts: 77
    edited January 2009

    I was diagnosed Oct 2006, Stage 3A.  Had my last Herceptin Dec. 2007.  Still NED as far as I know.

  • lexislove
    lexislove Member Posts: 2,645
    edited January 2009

    Awww,

    Thanks LittleFLower, and I do agree with you everyday is abit better. I have my 1ST , 3 months check up tomorrow with my 3rd Lupron injection and 2nd Zometa. I'm a little nervous, but at the same time happy to be taking these extra protection measures.Smile

  • maryannecb
    maryannecb Member Posts: 1,453
    edited January 2009

    I was IIIA too. 9cm tumor ,positive nodes. finished hercpetin Dec 06...so just got my 2 year NED card...yeah!

    They never did release more stats...I wish they would.

  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited January 2009

    I was diagnosed 12/04. IIIC, 17/24 nodes, one node was big....I had herceptin for 1 year 6/05-06.  Dx with mets 6/08.

    I think Herceptin keep the cancer at bay for a long time.  I just finished taxotere in November. I am now on Herceptin again and will be until it stops working. I hope it continues to 'work' and keep the cancer from spreading for a long time.

    Janis 

  • lauralou
    lauralou Member Posts: 13
    edited January 2009

    I have my next round of scans tomorrow and then hope to get port out! Finished Herceptin Dec. 16 after one year. Ready to move on! 

  • lexi4
    lexi4 Member Posts: 1,074
    edited January 2009

    Hey Everybody,

    I was diagnosed stage lllB, Aug. 05. Finished herceptin tx in Nov 06. NED as far as I know.

    Lexi

  • Annaanne
    Annaanne Member Posts: 190
    edited January 2009
    Hi everybody:
    Another stage 3er, hormone neg.  Finished herceptin July, 06.  3 and a half years out and very well.
    Annaanne 
  • kona2009
    kona2009 Member Posts: 3
    edited January 2009

    Dx 10/05 IDC stage 2B, grade 3, 2/6 nodes, hormone neg her2 pos. I finished my year of Herceptin March 07.  

    NED and I are still dancing.

    Nancy aka trk_koa (still trying to get my orig login fixed)

  • kimf
    kimf Member Posts: 334
    edited January 2009

    I finished my year of Herceptin in May '06 and I'm still NED as far as I know! My info is below, stage IIIC at original dx.

  • snowyday
    snowyday Member Posts: 1,478
    edited January 2009

    Neoadjuvant Trastuzumab Improves Survival for HER-Positive Breast Cancer Elsevier Global Medical News. 2008 Dec 15SAN ANTONIO (EGMN) - Adding trastuzumab to chemotherapy in the neoadjuvant setting improved event-free and overall survival in women with locally advanced HER2-positive breast cancer, compared with chemotherapy alone, in a study of more than 300 women.At a median follow-up of 3 years, chemotherapy combined with trastuzumab (Herceptin) was associated with significantly improved event-free survival, compared with chemotherapy alone, with a hazard ratio of 0.56 (P = .006). Likewise, overall survival for this HER2-positive population was better for women on trastuzumab and chemotherapy (HR, 0.65; P = .18). Although this finding was not significant, "the trend was very clear," said Dr. Luca Gianni, who presented the results of the phase III Neoadjuvant Herceptin (NOAH) trial at the San Antonio Breast Cancer Symposium."These data, we think, establish neoadjuvant trastuzumab with chemotherapy as a standard treatment option in women with HER2-positive locally advanced breast cancer," said Dr. Gianni Trastuzumab is currently indicated in the United States for the adjuvant treatment of HER2-overexpressing breast cancer.The study evaluated the efficacy and safety of anthracycline- and paclitaxel-containing chemotherapy followed by cyclophosphamide/methotrexate/5-fluorouracil with or without trastuzumab in women with newly diagnosed HER2-positive locally advanced breast cancer. A third observational arm included women with HER2-negative locally advanced breast cancer who received the same chemotherapy regimen without trastuzumab.For the comparative portion of the trial, 228 women with a score of 3+ on immunohistochemistry or with a positive FISH (fluorescence in situ hybridization) assay were randomized to trastuzumab plus paclitaxel-based chemotherapy (115 women) or paclitaxel-based chemotherapy alone (113 women). Trastuzumab was given as a loading dose of 8 mg/kg and then 6 mg/kg; paclitaxel was dosed at 150 mg/m², and doxorubicin was given at a dose of 60 mg/m². This regimen was given every 3 weeks for three cycles. Trastuzumab and paclitaxel were then given every 3 weeks for four cycles, followed by trastuzumab every 3 weeks for four cycles with cyclophosphamide, methotrexate, and 5-FU every 4 weeks for three cycles. This was followed by surgery and then radiotherapy. Trastuzumab was continued every 3 weeks to week 52. The chemotherapy-alone group followed the same regimen without trastuzumab. In this group, 19 women crossed over to the trastuzumab arm. Hormone receptor-positive patients received adjuvant tamoxifen. The 99 women in the third arm (HER2-negative, defined as a grade 0 or 1 on immunohistochemistry) followed the same treatment regimen as the HER2-positive, chemotherapy-alone arm.At baseline, 27% of the women in each of the HER2-positive arms had inflammatory disease. Also in both arms, 35% of women were estrogen receptor (ER) positive and/or progesterone receptor (PgR) positive.A series of subgroup analyses of patients with HER2-positive disease indicated an advantage for trastuzumab/chemotherapy treatment in noninflammatory and inflammatory disease, in either ER- and/or PgR-positive disease or ER-/PgR-negative disease, in disease with either no clinical axillary involvement or clinical axillary involvement, and in disease with either complete pathologic response or no pathologic complete response.In comparing event-free survival for women who were HER2 positive but who did not receive trastuzumab with that of women who were HER2 negative, those who were HER2 positive had a greater risk of relapse over time, Dr. Gianni noted. For the 113 women in the chemotherapy-alone HER2-positive group, there were 52 events at the 3-year follow-up, but only 33 events among the 99 HER2-negative women.The most common grade 3/4 adverse events included febrile neutropenia, neutropenia, diarrhea, stomatitis, infection, pneumonia, arthralgia, myalgia, and peripheral neuropathy. However, the rates of these events were low (on average, less than 5% in each group).In particular, the researchers looked at modification of the left ventricular ejection fraction graded according to the National Cancer Institute's Common Toxicity Criteria. Looking at the worst value during treatment and follow-up, the researchers found that most patients had no change or experienced a minor effect on LVEF. Two patients on trastuzumab had LVEF changes consistent with CTC grade 2, and two had LVEF changes consistent with CTC grade 3.The study was cosponsored by the Michelangelo Foundation and F. Hoffmann-La Roche Ltd., which makes Herceptin. Dr. Gianni reported that he is a consultant for Roche, Genentech Inc., GlaxoSmithKline PLC, and Wyeth.

  • Maire67
    Maire67 Member Posts: 768
    edited July 2010
  • marejo
    marejo Member Posts: 1,356
    edited January 2009

    Dx June '05....stage 2B......1/2 node (micromet to 1st node)......AC + T and herceptin. Dose dense...herceptin every 3 weeks for 1 year.

    Today.....Jan. 13, 2009 ...... 3 1/2 year NED survivor!  Thanking God and loving life.

  • shelloz1
    shelloz1 Member Posts: 405
    edited January 2009

    I finished my Herceptin the end of February 2008, so I guess next month I'm 1 year clean!

    Dx Sept 06, Stage 1, 0/8 nodes, grade 3, ER/PR neg and Her+++.  A/C 4 treatments (every 3 weeks) + Taxol 6 treatments (every week), 32 rads + 1 year Herceptin (every 3 weeks)

  • lastminuteD
    lastminuteD Member Posts: 333
    edited January 2009

    I finished my year of Herceptin 11/9/07 after my first dx 12/05 (no chemo) and then a recurrence 3/06 (hit it with the strong stuff!).  I hope and pray everyday to never hear "you have cancer" again!!

    Dawn

  • jerseymaria
    jerseymaria Member Posts: 770
    edited January 2009

    i'm also one who had a recurrence before i even finished my year of herceptin.  i felt totally blindsided.  for me it was expected but i just didn't think it would be that soon.  was hoping to get a few years ned but that was not to be.  of course now i can't take tykerb anymore ... or xeloda...so we have some planning to do.  good luck, maria

  • marejo
    marejo Member Posts: 1,356
    edited January 2009

    Just wanted to send "hugs" to you Maria and hope a "plan" is forthcoming and it's a plan that kicks that cancer to the curb.

    Love,

    Mary Jo

  • mary6204
    mary6204 Member Posts: 373
    edited January 2009

    Wow, Mitch, thanks for this topic.  I have 3 Herceptins left to go, but next week is my one year mammagram and I am scared to death.  Hearing from so many woman who are doing so well really helps me as well as it probably does you.

    I hope and pray that I can say, I too am a survivor for many years to come.  My mom died of BC just a little over 3 years ago so this really hits home.

    For those of you who are experiencing a reoccurance, I will keep  you in my prayers.  God bless and good luck to everyone.  If  you have a little time, I'd appreciate a small prayer for my test next week. I'm trying to keep the faith that it will all be okay, but you just never know.  Mary

  • marejo
    marejo Member Posts: 1,356
    edited January 2009

    Hi Mary,

    Just prayed for God's peace to surround you for next week's mammogram.  I pray all goes well.

    Mary Jo

  • mary6204
    mary6204 Member Posts: 373
    edited January 2009

    Thanks Marejo I will pray for you as well.  Our names are so close.  My full name is Mary Jo. My mom used to call me Jo. Is your real name Marejo, that's cool.  Mary

  • marejo
    marejo Member Posts: 1,356
    edited January 2009

    No, my real name is Mary Jo but when I registered it once it was used - so decided on marejo.

    Sending hugs and love for your day.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    Highest recurrence by year 2-3 after diagnosis. Drops off until year 5, then drops off to near-zero for recurrence after year 5. At year 4, things are looking good for ya Mitch.

  • Sassa
    Sassa Member Posts: 1,588
    edited January 2009

    Mary6204,

    There seem to be a lot of Mary Jos on this board.  I am also Mary Jo and a woman named Blue Willow is another one.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    I was originally dx'd in May 2002.  Unfortunately herceptin was not given in an adjuvant setting....only for advanced/mets bc.  When I was dx'd with local recurrence and mets in December 2003, I immediately started herceptin.  I've had some ups and downs, but managed to keep things under without chemo!!!  So I am beginning my SIXTH year of herceptin.  I truly believe many of you getting a year of herceptin adjuvantly will be protecting yourselves in a huge way.  Thank God for herceptin.

    Hugs,

    Bethie

  • ejlj
    ejlj Member Posts: 211
    edited January 2009

    jerseymaria-saw your post from the 14th and was curious as to why you commented that your reoccurance "was expected"?  I am sorry that treatment to date has failed you and am hopeful that there is something out there for you.  There has to be something!  Have you had any more conversations with your care team about the next step?  Keep us informed.  Tina

  • BethNY
    BethNY Member Posts: 2,710
    edited January 2009

    When I was diagnosed in 2004 Herceptin was only being given to stage four patients, and it was a scary time for so many of us. Thankfully, the trials were so successful, and the FDA approved Herceptin for all HER2+ BC patients, and I finished in 2006. In 6 months I will celebrate my five year cancerversary.

  • Sassa
    Sassa Member Posts: 1,588
    edited January 2009

    I am 1 year, 10 months out from finishing chemo (10 months from the end of herceptin).  I saw the onc today for my bloodwork and CT/PET scans results - NED.

    The onc is not letting up on her follow up; she keeps telling me I am at my highest risk for recurrence.  So in four months (April) I do the CT/PET scan and bloodwork again.

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