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HER2 Positive-anyone 10 years out?

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  • hughen
    hughen Member Posts: 1
    edited September 2009
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    HI -- I am an almost 5 year survivor and am doing fine.  I had a 3.7 cm tumor with sentinel node + / 0/11 on axillary nodes.  I am ER+ and Her/2 +.  Grade 3, PR unknown, Surgeon and pathologist staged at 2, for some unknown reason the oncologist insisted it was state 3.  I had 4 treatments of AC and Cytoxan , dose dense, and 12 of Taxol.  Actually had about 10 months of Herceptin.  (again the oncologist insists it was a year, but by my calendar February to December isn't a year!!.  Anyway,, I still take Arimidex,  I about worried myself to death for the first year, but now I just try to enjoy every day, play with the grandkids as much as possible, and do what I can to help others.  I feel so blessed to have had almost 5 years, and hope to have another 5. I really try to do all I can to prevent recurrence, and then try not to think about cancer too much.   My motto is

    "If you can't stop the storm, just learn to dance in the rain." 

  • k4katz
    k4katz Member Posts: 158
    edited September 2009
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    Hello, I just wanted to jump in and share my experience.  I am 3 years out and still NED.  I had my last herceptin in December 2007.  I was ER- and weakly PR+, which seems to be pretty rare (I have never met anyone with that kind of pathology, but I would love to if there is anyone out there!).  My PR was 17%.  So, my onc recommended taking tamox anyway, and the way he put it was that the slight PR+ allowed me the 'opportunity' to take tamox.  I was not convinced that it was such a great opportunity, LOL, but decided to try it (I figured I could always stop taking it if the SEs were too much).  I have been on tamox for over 2 years now and the side effects are definitely manageable, and in fact have decreased over time. 

    I, too, worry about recurrence and hope I am being vigilant enough to catch it early if it happens.  I am glad to hear that recurrence rates for her2+ actually drop off over time!  I have been thinking about looking into the phase III clinical trial of neratinib for early stagers, to see if I qualify.  Anyone know anything about that study?

    *Hugs*

    Kristin

  • KristyAnn
    KristyAnn Member Posts: 131
    edited September 2009
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    I am talking to my onc tomorrow about the study - they called and asked me to come in to discuss it.

    Kristy

  • connette
    connette Member Posts: 3
    edited September 2009
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    Hi k4katz,

    I am in the middle of my treatment.  I am ER-/PR+, HER2+.  I have been wondering if I would ever find someone with my pathology report.  I found out in March of 09 that I had breast cancer.  I had a lumpectomy, followed by 4 cycles of AC, 38 zaps of radiation, and now will start TCH tomorrow.  Of course, I'm very nervous. . . I would love to hear about your journey.  I know I can't offer you any advice, but I would be happy to share your thoughts and fears.  Connette

  • k4katz
    k4katz Member Posts: 158
    edited September 2009
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    Connette!  I am so excited to find someone with a similar pathology!  I sent you a PM.

    Kristy, good luck with your meeting with your onc, let me know what you find out, if you don't mind.  My onc was on vacation but is back today and I will try to reach him.

    I am sorry, I did not mean to hijack this thread...there is another thread specifically regarding the study, and so I will post any future developments on this topic there!

    Now, back to the topic at hand...anyone else 10+ or at least several years out?  Smile

    *Hugs*

    Kristin

  • Bold
    Bold Member Posts: 306
    edited September 2009
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    I am very interested in the ER+ but only slight. I am 2%. That is such a small number. I have had 1 onc tell me to take Hormone blocking drugs and 2 that have told me don't bother. The one that told me to take it said the same as a previous post about the cancer free breast being at risk. Geeze how can we make such important decisions bases on no data. It is hard any input is welcomed. I am sure most of us have beat this beast. We need to truly resonate that we have won. Be diligent and watchful. Exercise keep you bmi within proper range eat apples. Google apples and breast cancer it fascinating. And enjoy!!!!!!

  • weety
    weety Member Posts: 371
    edited September 2009
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    My onc said the same thing about ER weakly positive.  SHe said that doing the tamox. is as much for the healthy breast as it is for the current diagnosis. (I guess any estrogen receptors at all warrant possible tamoxifen.  Also she said sometimes Herceptin tends to "turn back on" some of the estrogen receptors.  I've seen a few studies indicate this as well.)  She tried to explain that most bc's begin as  being hormone receptive, but some lose it as the cells continue to divide.  Keeping estrogen in check would/should help keep new cancers from forming in the good breast.  I'm thinking about getting a 2nd opinion on my next steps after I finish chemo (still have a few months ahead of me) for this and also for the whole radiation possibility.  Current onc says no to radiation because tumor was in inner breast.  She's worried more about heart damage from radiation than a recurrance, but it scares me not to do it because margins were only 1mm and 3mm after mastectomy (I was not even quite an "A" cup so there wasn't much breast fatty tissue between tumor and chest wall for them to take. Also, the DCIS found in other portions of the breast did NOT clear the margins.  It was "present at deep margins.")  I hate putting so much trust into oncologists.  They are trained well, but they don't know everything!

  • jap
    jap Member Posts: 43
    edited September 2009
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    Hi,

    What do yoiu mean by Herceptin and turn back on?  What are the studies?

    Thanks!  I could really use this information.

    Jo Anne

     

  • orange1
    orange1 Member Posts: 92
    edited September 2009
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    Hi weety911

    With a positive margin for DCIS and an aggressive IDC, I'd definitely get a second opinion regarding the radiation or else have a re-excision until you have clear margins.  I would guess the DCIS is also an aggressive type.  The last thing you need is to be dealing with this again in the future.

  • weety
    weety Member Posts: 371
    edited September 2009
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    Jap,

    I thought I had read about the estrogen studies more than once in all my research, but right now, I can only find one of the studies I had seen (and it was only in the lab, not in people.)  I found it on this site at:  www.breastcancer.org/treatment/targeted_therapies/new_research/20090618c.jsp

    Orange,

    Thanks for the advice.  I think I will get a 2nd opinion.  According to the surgeon, though, re-excision is not possible because he already took out all the breast tissue he could (remember I'm very small-boobed)  I guess the only possibility would be to remove the chest lining---I've heard of this a few times in different posts on this site, but not at all sure of what it is or what it involves.

  • [Deleted User]
    [Deleted User] Member Posts: 87
    edited September 2009
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    Hi all,

    I don't mean to hijack my own thread :) but I am wondering about taking Tamoxifen because I am weakly ER+ and PR-.  I had bilateral mastectomies, so reading that taking Tamoxifen protects the other breast doesn't apply.  What is the advantage for us weakly positive gals with no boobies? 

    Thanks

    tuckertwo

  • orange1
    orange1 Member Posts: 92
    edited October 2009
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    Hi tuckertwo,

    Besides protecting the other breast (which you don't have), tamoxifen reduces the chance of distant recurrence and death.  For non Her2 positive women, the response is proportional to the degree of estrogen receptor positivity.  It is not clear if this is also true for us Her2 women.  Some studies show that Tamoxifen greatly reduces our chance for recurrence and death as a group.  however no data is provided on the degree of ER positivity for the women in the study.  But as a group, when Her2+ are hormone receptor positive, we tend to have weaker positivity than non Her2 women and tamox was still very effective in this study.

    If you decide to try tamox PLEASE get your CYP2D6 metabolizer status checked.  Tamoxifen improves the outcome of externsive metabolizers, but can promote cancer growth in poor metabolizers that are Her2+.

    Here is a study that looks at tamoxifen use in Her2+ breast cancer:

    Note that this study was done on tumors before herceptin was used as adjuvant therapy. 

    Does hormone receptor (HR) positivity affect the prognosis in breast cancers with human epidermal growth factor receptor 2 (HER2) overexpression?

    <td width="1%"> </td>
    <!-- content body -->Sub-category:Prognostic Factors Category:Tumor Biology and Human Genetics Meeting:2009 ASCO Annual Meeting Abstract No:e22091 Citation:J Clin Oncol 27, 2009 (suppl; abstr e22091) Author(s):Y. Lee, J. Sohn, B. Park, H. Chung, C. Suh, S. Kim, J. Koo, J. Kim, H. Choi, Y. Kim; Yonsei University College of Medicine, Seoul, Republic of Korea; National Health Insurance Co. Ilsan Hospital, Goyang, Republic of Korea

    Abstract:

    Background: Biologically, there is an unclear issue about the role of HR positivity in HER2 positive breast cancer. These HER2(+)/ HR(+) pts were grouped into luminal B type apart from HER2(+)/ HR(-) pts in molecular profiling. However, from the clinical point of view, these pts have been categorized and been treated as either the only HER2(+) disease regardless of HR status or vice versa. Thus, we investigated the impact of HR status on clinical outcomes in HER2-overexpressed breast cancers. Methods: We retrospectively reviewed medical charts of HER2-positive breast cancer pts who underwent curative surgical resection from 1996 to 2001 in the Severance hospital, Korea. Demographic comparisons were performed by Chi-square tests. Tumor size, nodal stage, TNM stage, HR status, and adjuvant tamoxifen use were included in the Cox proportional hazards model. Results: Among the total 174 HER2-positive pts, HR (n=93) was positive in 53.5% (n = 93) and HR-positive tumors were more likely to be premenopausal (73% v 52%; P=0.01) and well- differentiated (grade 1or 2; 77% v 62%; P=0.04). There were no significant differences according to HR status in terms of tumor size, nodal stage, TNM stage, operation methods, and chemotherapy regimen. In these HER2-positive pts, the 5-year disease free survival (DFS) was longer in HR(+) pts than in HR(-) pts (DFS; 82.9% v 61.5%; P= 0.01). In a subset analysis, the 5-year DFS of HER2(+)/ER(+) pts without adjuvant tamoxifen (n=26) was not different from that of HER2(+)/ ER(-) pts (DFS; 57.7% v 61.5%; P= 0.32). However, the 5-year DFS of HER2(+)/ ER(+) pts with adjuvant tamoxifen was significantly prolonged compared with that of HER2(+)/ ER(-) pts (DFS; 91.5% v 61.5%; P< 0.001). In a multivariate analysis of DFS, tumor size and adjuvant tamoxifen use significantly affected DFS with an adjusted hazard ratio of 2.56 (95% CI, 1.2-4.9; P= 0.01) and 6.58 (95% CI, 2.8-20.3; P< 0.001), respectively. Conclusions: In an analysis of HER2-overexpressed breast cancer, the presence of HR itself did not affect the prognosis. However, most of the survival benefit seems to be driven from adjuvant tamoxifen therapy not the HR status itself.

  • debbieb
    debbieb Member Posts: 14
    edited October 2009
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    Hi Tuckertwo,

    On October 31st I will celebrate my 8th anniversary with being dx'd with HER+++ bc.  Things have changed drastically sinced 2001 when I was dx'd.  There was NOTHING good about being HER+.  What little info you could even find about being HER+ was all negative and offered little hope.  Doctors were just starting to test for the HER-2/neu oncogene.  There were no statistics or data available and you couldn't find any long term survivors.  It wasn't because they didn't exist,  there just wasn't any data available then.  Only about 25% of us are HER+.  When I first joined bc.org there were only 4-5 of us that were HER+. I can remember posting just to find a long term survivor out there and was so estatic when I finally heard from someone who was 6 years out.

    Also, when I was dx'd, herceptin was ONLY given to women who were stage 4.  I was Stage 2 so only got 4 rounds of AC chemo.  I have never received herceptin.   Here I am 8 years out and NED.  It can happen. 

    Hang in there.

    Debbie

  • [Deleted User]
    [Deleted User] Member Posts: 87
    edited October 2009
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    Hi Debbie,

     I appreciate the uplifting words.  I hope I am as lucky as you!  Is there credence in the posts I'm reading about making it past the 3-5 year mark with her2+, as her2+ seems to lose its punch after that time?  Someone did post about that and now I've forgotten where I saw it.....

     What do you attribute to your being NED?

    Did you take any aromatase inhibitors or Tamoxifen?  I see you are ER-PR-, I am only weakly ER+ and debating whether to take any of this hormone stuff as it would hardly benefit me.

     I only got 5.5 rounds of taxotere/carboplatin.  I am wondering if herceptin is highly overrated...and I am thinking of not having the last number 17 round of it Oct. 8.  Does anyone know the long term effects of herceptin, or am I a guinea pig?  I read about cardiomyopathy and wonder if that can happen suddenly after 17 rounds of herceptin, or if one tends to develop it during initial treatments?  It's kind of freaking me out.  My heart has always been good and I'd hate to mess it up. 

    Thanks for writing and hope to hear from you,

    tuckertwo 

  • [Deleted User]
    [Deleted User] Member Posts: 87
    edited October 2009
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    orange1,

     They do not do these CYP2D6 tests here - maybe in eastern Canada, but my onc told me to try the Mayo Clinic as they do them and they are more reliable than other places.  Any idea who/where I would begin to ask at Mayo about this?

     Thank you,

    tuckertwo

  • lexislove
    lexislove Member Posts: 277
    edited October 2009
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    tuckertwo,

    I'm in B.C. as well. Where abouts are you?

    I have looked into the CYP2D6 test here as well. You are right, they do not offer it. But I believe at St. Pauls hospital, down town vancouver, you can have blood drawn and they will ship it to where ever in the States to have it tested. I am not in the country at this time, but I will be looking more into it when I get home.

  • debbieb
    debbieb Member Posts: 14
    edited October 2009
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    Hi Tuckertwo,

    I wish I could tell you something that may contribute to my still being NED after 8 years but I can't.  The one thing I do know is there is no rhyme or reason when it comes to cancer.  I did not do tamoxifen as I was ER-/PR-.  Just did the 4 rounds of AC and radiation.

    I did end up with cardiomyopathy from the Adriamycin.  Hit me suddenly 6 years out.  My onc never did muga scans and I wish now I had demanded them.  From what I have read, Adriamycin is much more toxic to the heart than herceptin.

    From what I understand about being HER+, it is an oncogene that somehow gets turned on and causes cells to develop like crazy.   There is another web site dedicated just to HER+ bc.  The web site is:  http://her2support.org/   This site has more info on being HER+ than any site I have ever seen. 

    Debbie

  • hollyann
    hollyann Member Posts: 279
    edited October 2009
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    Hmmm...I'm 2 yrs and 9 months out from dx with Her2 Neg bc..Highly ER/PR pos......DId I read right?.....I am at a higher risk for resurrance the farther out I am?????

  • lexislove
    lexislove Member Posts: 277
    edited October 2009
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    I think the risk of recurrence is always there for ER+ woman.

    I know with ER- and Her2+ the greatest risk is the first 3 years. After that, chance of recurrence drops a lot.

    But I'm both so I don't know where that would put me..lol.

  • casuarin
    casuarin Member Posts: 1
    edited October 2009
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    Hi everyone,

    I want to share this with you all. I was just been diagnosed about 2 months ago. Mastectomy and silicone implant was done in mid august. Just done the 2nd cycle chemo, awaiting the third one. I'm 35, married with 4 children , youngest 13 months. Chemo is hard for me. I'm still depressed and denial about the diagnosis. While sitting in my oncologist's office today, one woman came to me and shared her experience. She was diagnosed with breast ca 16 years ago. Operation and chemo were done. Was not tested for HER2 at that time since the test was still not available in my country. She was apparently well till 2003 when she was diagnosed with local recurrence . Found out that she was HER2 positive. Operated and did chemo again but declined Herceptin due to cost. In 2006 , she was diagnosed with bone and liver mets and she was then given herceptin till now. She is doing well and has a happy life with family and grandchildren. Her tumour markers is above 1000 but still think positive about future. She said to me, lead your life happily as you have many years to come. I had lived 16 years  as a ca patient and still expecting more years ahead of me. Cancer doesn't mean end of everything. She really made my day.

  • Lcharmie
    Lcharmie Member Posts: 156
    edited October 2009
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    As of Nov. 17 2009, I will be 11 year Survivor, it has been a long journey with 8 different kinds of Chemo and a double mastectomy.  I have had 6 occurrences of this ca--not what you want to hear--but its real.  I have been Blessed to still live a great quality of life, (I worked a full time job til 2003, the job moved out of state, and no other job would hire me with chemo costing 9000.00 a month, knowing they would have to pay half, then my husbands company would pick up the other half:  When I put in for disability it was immediately granted, I was 5 years in to this illness and getting chemo every week.)--just rolling with all the punches.  I was on Chemo of one kind or another for 6 years, and I had been off of chemo for 9 months when we discovered this in Sept., with a fine needle biopsy, all body CT scans came back normal "Thank God".   Just last week I had to go back on Herceptin and Navelbine as the breast cancer cells are in the lymph nodes in my jaws(under my ears).  Wed was my 2nd treatment and I believe they are shrinking--feel smaller to me than a week ago, and the nurse said, this is quite possible.  I send my story to say--we may have to challenge this as long as necessary--and if the meds keep me going, I will go with them, I don't like it, but I like being here so" I Move On Under Gods Graces".  Hang in there everybody--live everyday to the best.  I plan to be here many more years---just let them keep coming out with more"goodies"(meds) for us.  It is the way it is.  I believe too, Cancer does not have to be a death sentence--till it is!!

    Linda C.

  • [Deleted User]
    [Deleted User] Member Posts: 87
    edited October 2009
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    Hi Linda,

    Thank you for sharing.  What a story. Kudos to you for being strong and celebrating 11 years!  I would be interested in knowing more about your diagnosis.  Did you have any positive nodes?  Any vascular invasion?  Did you do the dbl mastectomy right away after the dx? You mention a needle biopsy and I wondered if that was in the breast?  Sorry for the many questions.  Also when did you begin herceptin for the first time?  I guess I am interested in knowing what the doctors did right after your initial diagnosis 11 years ago, as far as surgery, chemo or rads?  I'm glad the little buggers are shrinking now. I have heard that herceptin and in combo with other drugs is pretty powerful.  I hope to hear from you again, Linda.  Thank you for posting!

    Dianne  - tuckertwo 

  • Lcharmie
    Lcharmie Member Posts: 156
    edited October 2009
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    Hello Diane,

    I will be more than glad to tell you my story----I had a mammogram in May 1998, when I was doing my monthly exams, in Oct. 1998, I felt a lump, the size of a pea, by the time I saw my Drs, my life took a new turn by Nov.  I had a lumpectomy on my left breast on Nov. 17, 1998.  I had lymph node surgery on Dec. 9, 1998.  17 nodes removed 6 were positive.    I started Chemo Jan. 1999--it was 4 treatments of Adramycin and Cytoxan and 4 treatments of Taxol, followed by 34 Radiations.  I sailed along good, sometime in 2001,  I thought that left breast was feeling heavy and getting larger.  My Radiation Oncologist, said it was the effects of radiation, she told me to get a larger bra,(from a 40DD to a 40DDD) I did, by Apr. 2002,  I went to see her again, she said "we got a problem"!!  She sent me back to the surgeon,  he did a Needle Biopsy and it came back positive for cancer. He said it is difficult to tell Cancer tissue from Radiated tissue.   I had a mastectomy, May 31, 2002 on that breast.  3 weeks later when my Oncologist was going to tell me what Chemo I would be taking. he was checking the right breast, and found a lump there, once again, a Needle Biopsy was done,  the Dr. that did this one said, "he'd bet money in Las Vegas, it was benign"----well it was positive--you will wonder what kind of Drs. do you we have here?!!!   (I did not bet this person money, probably could  have been 2 lawsuits, however I have used my energies to challenge this life!!) I had a masectomy of my right breast Jun. 18th 2002, there was 1 positive node, I decided since they could not tell the difference of Cancer tissues and Radiated tissue, I chose not to go through that again.  OK--3 weeks later, I had a port put in.  In Aug. 2002 I started Herceptin and Navelbine--in Nov.2002, the Oncologist decided I had been on the Navelbine long enough and took me off, by Jan. 2003, it had come back in my chest, it looked like lil flat red bumps--like bug bites--a biopsy was done and it was positive.  We added the Navelbine back  It soon built up a resistance, as I was getting these every week--in 2005 we decided to do Xeloda and there was no change, redder some days than others-- the side effects were bad, we done Herceptin again,  Aug. 2006 we tried Radiation(34) again.  The Cancer looked like it was gone, by Dec. 2006 it was back--all these times just up in(skin) of my chest--all CT scans come back normal.  I saw Dr. In Jan. but decided I was going to Las Vegas for my 60th birthday Feb 14 and I would take up the Cancer stuff when I came back!!   In Feb. 2007 we done Taxotere for 5 treatments, I did not make it to 6--I was so fatigued, I told my Dr. I felt Psychotic--that was the truth--so he took me off Taxotere, and I done Herceptin alone till Sept 2007, I went on Tykerb and Navelbine till  Oct. 2008, we both decided to lets just do nothing, give my body a break(that was 6 years of Chemo.)  I was doing well so I thought, felt great, however I had these lil knots under my jaws, seen them last Dec. by Jan. 2009 they were gone---they were back in June, we were going to watch them--well by Jul. they were larger---we done CT scans, they were normal, Dr. said lets do a fine needle biopsy of those places, they went in under my chin and took 2 pieces of tissue, and they came back positive for breast cancer, so as of 2 weeks ago, I am on Navelbine and Herceptin again(sure was nice to be off Chemo those 9 months and I hope and pray this is short lived).  As of Wed. the places feel smaller to me, I will see the Dr. again on the 27th.  Once again I am just glad to be here to tell my story and encourage any one else along the way.  It has certainly been a journey, but I am not tired.  Thanks for asking--I will check back in---I hope I answered your questions.

    Take Care.

    Linda C.

       

  • Carolina59
    Carolina59 Member Posts: 27
    edited October 2009
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    Tuckertwo,

    Just want to respond re: finishing your Herceptin tx. My onc. put me on TCH to avoid the double whammy to the heart of Adriamycin and Herceptin. I also got frequent MUGA scans to monitor my heart so that Heceptin tx would be stopped if heart function fell below a certain percentage. My understanding was that Adriamycin could cause permanent heart damage whereas heart function could recover after Herceptin is stopped if there is a drop in functioning. If you have gone through all your Herceptin txs with no heart problems, I'm not sure there is any reason not to get the last one. 

    I feel I threw everything available at BC so that I wouldn't have regrets and would worry less about a recurrence. My ER/PR status was over 90% for both so I now continue on Arimidex.

    Good luck to you. 

  • nutrachris
    nutrachris Member Posts: 1
    edited December 2009
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    I was first dx'ed in June 1990 had lumpectomy, chemo, radiation. Of course I wasn't tested for HER2, Had recurrence in 1999, tumors to clavicle and 3 CNS tumors. Tested HER2+ 3+. Treated with Herceptin, Gamma Knife and then WBR. Still in remission.

    I guess you can say I am either a 19 year or 10 year survivor. I just returned from the San Antonio Breast Cancer Symposium with 10 members of the HER2 Support Group website, so I guess that you can say I'm doing OK.

    I also met Dr. Marissa  Weiss at the meeting. She is a very charming lady.

    Hugs

    Christine

  • denny123
    denny123 Member Posts: 1,495
    edited December 2009
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    I just posted on the Stage 4 forum.  I am a 7 1/2+  year survivor of Stage 4, and have now been in remission for 5 1/2+ years.

    Gemzar and Herceptin kicked my liver mets to the curb, I have remained on Herceptin and will be on it for life.

    Denise

  • blondie45
    blondie45 Member Posts: 82
    edited December 2009
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    Very encouraging post everyone!

  • janie44
    janie44 Member Posts: 25
    edited December 2009
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    Hey everyone,

    I am now 5 3/4 years out and still NED.  I had a large tumor removed with 7/20 nodes positive, one under the arm being as large as the tumor and two wrapped around the supra-clav.  Being one of the guinea pigs for the Herceptin trial, I have not seen results 10 years out yet, as the results came out on the stage 3 and under participants in April of 2005.  I now only have to see the oncologist once a year.  I have taken note that the vast majority of those stage 3/less ladies who were on Herceptin on this board have not recurred to date.

    Hugs,

    Janie

  • helena67
    helena67 Member Posts: 16
    edited December 2009
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    Thanks Janie,

     You make my day!

    -Helena.

  • TriciaK
    TriciaK Member Posts: 124
    edited January 2010
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    Just thought I'd say hi to everyone, highly triple pos in '05 with 3/5 nodes positive.

     I've been doing great although currently awaiting an mri for back pain and hoping it's old age rather than mets!!    My pet/ct was negative but bone scan showed one tiny spot of suspicion, first mri inconclusive!  Spot is too small for biopsy.

    I'm really hoping I haven't recurred, I was one of the first here to get herceptin for early stage bc and believe in this drug and would hate to think it's let me down.

    I find some of the posts here encouraging and staying positive until I hear otherwise:)

    Tricia x