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HER2 Positive-anyone 10 years out?

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  • orange1
    orange1 Member Posts: 92
    edited February 2010
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    The article said that taxanes are more effective in Her2+ cancer than in Her2- cancer.  I will try to find and repost.

  • [Deleted User]
    [Deleted User] Member Posts: 87
    edited February 2010
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    Thanks, lexi, for the encouraging words,  and orange1 for offering to repost.  I would like to see the study when you have time, orange1.  Really, really appreciate that!

    Dianne -tuckertwo

  • lkc
    lkc Member Posts: 182
    edited February 2010
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    Tucker, Alot of Docs prefer Taxotere for ER PR neg tumors. I did Taxotere and am fine.

  • orange1
    orange1 Member Posts: 92
    edited February 2010
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    From New England Journal of Med. Oct 11, 2007

    Figure 1

    Sorry graphs are so tiny.

    Here is my paraphrased summary:

    We hypothesized that Her2 positivity predicts a benefit from adjuvant doxorubicin doses above standard levels, from the addition of paclitaxel after adjuvant chemo with doxorubicin plus cyclophosphamide, or both.

    Population: 1322 node-positive who had been randomly assigned to recieve doxorubicin (60, 75 or 90 mg/m2 body surface area) plus cyclophosphamide for 4 cycles followed by 4 cycles of paclitaxel or observation. 

    Results: No interaction was observed between Her2 positivity and doxorubicin doses above 60 mg/m2.  Her2 positivity was, however, associated with a significant benefit from paclitaxel.  The interaction between Her2 positivity and the addition of paclitaxel to the treatment was associated with a hazard raito for recurrence of 0.59.  Patients with Her2+ breast cancer benefited from paclitaxel, regardless of estrogen receptor status, but paclitaxel did not benefit patients with Her2-, ER + cancers.

    Take-home messages.  1.)Higher doses of doxorubicin were not more effective than standard doses.  2.) Paclitaxel benefited that with Her2+ cancer significantly (reduced risk of recurrence by 41%, but did not improve outcome in Her2- cancer.

  • [Deleted User]
    [Deleted User] Member Posts: 87
    edited February 2010
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    Linda - Thanks for replying!   I'm in that weird group of estrogen receptors - a weak ER positive -and I have opted to not take AI's or Tamoxifen because they made me nauseated for weeks. And the benefit, for me, was only 4-6%, which is very small. There are so many variables about who is considered ER- and ER+. It seems to vary even by province here in Canada. I think the docs aren't sure either.

    Orange1: appreciate your taking time to re-send the info.  I was node-negative and wonder how this study relates to that, if it makes any difference, or not?  Have to be scientists to figure some of this stuff out eh? :)

    Dianne -- tuckertwo

  • orange1
    orange1 Member Posts: 92
    edited February 2010
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    Tucker - there is no reason to think that a taxane did not benefit node negative just as much as node positive.  It probably reduced your chance of recurrence by about 41 % compared to no taxane treatment.  

    Since you were treated with chemo + herceptin, and were node negative, the best estimate of your risk after chemo/herceptin is probably the results of BCIRG 006 if you had TCH.  In this study node negative treated with TCH is at about 90% no recurrence after 5 years.  Node negative treated with AC TH are at about 93% no recurrence after 5 years.

  • [Deleted User]
    [Deleted User] Member Posts: 87
    edited February 2010
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    Thanks, orange1!  I didn't get the BCIRG 006 test and don't know what it is.  Has it got to do with family history of bc? 

    I did have the TOPO2 test which was negative...guess that's a good thing. I'm a bit on overload as far as knowing what these tests are and which ones I should have. 

    The 90% sounds good. I was never given any % except - I believe - 70% no recurrence in 10 years but that was without herceptin.  Herceptin, from what I have read, is either 100% going to work for someone, or not.  There is no way to tell.  I am triple her2+ as well.

    Dianne alias tuckertwo 

  • weety
    weety Member Posts: 371
    edited February 2010
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    what's the TOPO2 test?

  • lexislove
    lexislove Member Posts: 277
    edited February 2010
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    The BCIRG 006 is a study...not a test.

    You may be able to google it, I had it but accidently deleted it...Yell

  • lexislove
    lexislove Member Posts: 277
    edited February 2010
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    http://www.cancernetwork.com/display/article/10165/1151041

    Here is info on the TOPO 2 test...

    Question...would they do this test during pathology? When the tumor is removed?

    I wonder if my tumor was tested...I had it removed March 27th 2008. No one mentioned anything....I probably should just forget about it..lol.

  • [Deleted User]
    [Deleted User] Member Posts: 87
    edited February 2010
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    Thanks, I'll try to google the BCIRG 006.  I was never quite clear about what my TOPO2 test results were.  All the doc would say was 'it is negative'.  I don't know what that means, given the article says something about deletions or no amplification.  Anyone know?  

    I learned about the TOPO2 from a bc site and asked my doc to do it after I had surgery. They can re-test the tumour if you ask. 

     Dianne --tuckertwo

  • lexislove
    lexislove Member Posts: 277
    edited February 2010
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    I think the TOPO test has something to do with agressivness of a tumor. As well as most likely to recur. They also use the TOPO test to see who would benefit most from Anthracycline chemotherapy.

    Since My tumor was removed 2 yrs ago and I already finished ALL my treatment (AC/T)...I think I'll just leave things. Knowing my TYPO result would proably be pointless at this time.

  • [Deleted User]
    [Deleted User] Member Posts: 87
    edited February 2010
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    lexislove, I agree with you.  No point!  But someone else reading about this test (TOPO2) might want to retest if they are still undergoing chemo. 

    Now......where are those ladies who are 10 years + with her2+???  How are you doing??

  • lexislove
    lexislove Member Posts: 277
    edited February 2010
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    I agree tucker.

    Im doing well.......2.5 yrs out. So far so good.

    I think "we", the woman here posting, will be the 10 yr stats...lol.

    Wouldnt that be nice?! To come back and post..." oh yeah..I did Herceptin 10 yrs ago, for a whole year."!

  • helena67
    helena67 Member Posts: 16
    edited February 2010
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    Regarding BCIRG 006, go to www.bcirg.org/Internet/default.htm. At the top of the page there is a slide set on the latest results presented in San Antonio 2009.

    -Helena.

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2010
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    Dianne -- if you were negative on the TOPO I believe that means your test showed no amplifications or deletions.  That is all you need to know (it's like being HER2 negative).

    Lexis -- 2.5 years -- woot!  WTG!  How do you know when to count from?  I had my mammo that was suspicious last March, biopsy in April, official declaration of cancer first week of May, two lumpectomies in June, chemo August - Nov, uni MX in Dec :)  From when do I count my years of NED?  Any thoughts?  There was no cancer left in the breast tissue from the MX so my BS said that probably means all the cancer was removed by the second lumpectomy (three clear and one "close" margin after the second excision is what prompted the MX).  Just curious.

    Helena -- I did find A link to the BCIRG studies but for the life of me could not understand what I read or maybe was just not finding the right link?  It seemed to be a description of the trial (rather than results).   I'll try your link and see if that works better.

    Lilah

  • lexislove
    lexislove Member Posts: 277
    edited February 2010
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    helena..

    Thanks for the heads up with that link!

    I went to the website and took a looky...heres the findings from San Antonio 2009 for you all to view.

    http://www.bcirg.org/NR/rdonlyres/eno7mvfpseiqi5g3pernz37zzeavin4f7o5hos4zwlu76clvwkfluhskusgcmnqvyqk7ksb4gdimpmt6xcmkxppnqce/945_GS5_02_+abst+62+Jan+10.pdf

  • lexislove
    lexislove Member Posts: 277
    edited February 2010
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    Im pretty sure that these studies...like the BCIRG one I posted above, was from date of diagnosis.

    Someone correct me if Im wrong..please.

    I, myself, go from date of diagnosis. Main reason being, I had neo adjuvant chemo (chemo first) My tumor was not removed right away...it was inside me for 6 months from being dignosed. Well...actually I noticed my tumor Jan 2007..diagnosed Sep 2007...so waaaaay longer. It has not come back. Tumor markers are excellent, I feel good.

    I just passed my 2 yrs from finishing AC/TH chemo, it will be 2 yrs March 27th that I had the tumor removed and 15 months since finishing Herceptin.

    Ive read that 80% of woman who do surgery first a "cured" of their BC at that time. We just do chemo and rads to be on the safe side. So for you...the surgery date would be reasonable.

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2010
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    OK, having looked over Helena's link... it looks like they found (in their sample) a rate of 84% disease free survival for those receiving ACTH at 4 years post therapy, 80% for those receiving TCH, and 73% for those receiving only ACT (no Herceptin).  Some of the other charts/highlights seem to indicate: better survival rate for those who were node negative (not surprising), statistically significantly less SEs if you JUST used TCH (this study was made at least in part to compare the benefits of the stronger ACTH vs the lesser SEs from JUST TCH, I believe), and a greater risk of developing Congestive Heart Failure with ACTH (21 out of 1,068 on ACTH vs 4 out of 1,056 on TCH... but those are BOTH small numbers).

    Their conclusions are copied and pasted from the site below:

    Conclusions:BCIRG-006

    􀃆 Trastuzumab provides a similar and significant advantage for both DFS

    and OS when used with either anthracycline-based (ACTH) or nonanthracycline

    (TCH) chemotherapy. This advantage is seen in both low

    and high-risk patients

    􀃆 The acute and chronic toxicity profiles of TCH are better than those seen

    with the ACTH regimen in almost all parameters measured

    􀃆 There is no statistical advantage of ACTH over TCH but there is a 29

    event numerical advantage in DFS events in the ACTH treatment arm

    􀃆 This numeric advantage comes at the cost of 21 CHFs (5X more than in

    TCH) and to date, there are 8 acute leukemias in BCIRG-006.....all

    occurring in patients receiving AC as part of their treatment

    􀃆 BCIRG-006 demonstrates that the incremental benefit conferred by AC

    that is known for HER2-positive breast cancers is restricted to TOP2A coamplified

    malignancies which constitute a subset (35%) of these cancers

    􀃆 This same incremental benefit (found in the TOP2A subset) can also be

    achieved by trastuzumab used in a non-anthracycline regimen, avoiding

    the long-term and life-altering toxicities (CHF or acute leukemia) seen

    with the anthracycline-based regimens

    So it sounds like they are saying that the TOPO test is useful because if you are negative for TOPO then there is no real benefit in having ACTH because TCH is statisically just as successful for your cancer and LESS dangerous for SEs like leukemia and CHF (which regardless pose a very low risk in in either case, but why not lower that risk even further)?  God knows I wish I'd known this last summer when I started chemo!  I did ACTH... and while my SEs weren't AWFUL I would have welcomed less of them :) 

    Actually, upon rereading the conclusions I think it's ALSO saying that even though TOPO positive cancers respond well to ACTH they also respond just fine to TCH... so it is looking more and more like the A can be dropped from the standard chemo therapies for HER2+ cancer.  Is that what you get?  As I said, it's too late for me, I did ACTH (and never had a TOPO test)... but am just curious.

    Also: can anyone tell me what DFS and OS mean/stand for?

    Lilah

  • helena67
    helena67 Member Posts: 16
    edited February 2010
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    DFS = disease-free survival, OS= overall survival.

    I think it's an encouraging study. Though I am on the 'bad' side of the cut-off point for lymph nodes (1-3 vs. 4-10).

    -Helena.

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2010
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    It is encouraging, Helena.  Thanks so much for posting the link (and the explanation - d'oh! - I shoulda known that :)

    Basically the study shows two important things: HERCEPTIN ROCKS and because of that it's looking like we don't really need the extra toxicity of Adriamiacin.

    Lilah

  • helena67
    helena67 Member Posts: 16
    edited February 2010
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    I think the 'time period' is from the start of randomization (when the assignment to the various treatments takes place). So, very close to the first dose of chemo. 

  • lexislove
    lexislove Member Posts: 277
    edited February 2010
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    DFS= disease free survival.

    So NED.

    OS= Overall survival.

    That includes ALL woman,) NED, local recurrence, diagnosis of mets) alive.

    oops...helena we were typing at the same time!

  • lexislove
    lexislove Member Posts: 277
    edited February 2010
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    Funny...I did not start posting on this board till I was doing rads.

    I had no idea about TCH. I was told AC/TH and I said ok. Was aware of potential heart problems, but was just so ready to get my BC gone.

    My heart was monitored every 3 months and on Herceptin and it never dropped dangerously low...I think my last muga was 62 or something like that. Im glad though that the effects from AC are reversible for the majority of woman.

    Today, I feel good. My cholesterol is .3 higher than it should be....but other than that...good.

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2010
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    Same here Lexis.  My ONC said AC/TH and less than 10% chance of recurrence when I am done and I said sign me up.  My dad, a doctor (retired), also researched the protocol and said it was THE standard for my pathology (so that helped).  I only heard about TCH later.  Ah well. 

    My heart scans have also been the same since I started (around 59) so here's hoping nothing bad happens later.  They say the risk for CHF lasts up to 8 years, by the way.

    So glad you feel good!  My cholesterol is actually better for what it's worth.  So .3 is no doubt a natural fluctuation.

    Lilah

  • lexislove
    lexislove Member Posts: 277
    edited February 2010
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    8 yrs!!!!

    I would assume the longer one is out the risk decreases?

    I was told that woman who are older, with a family history and  personal history of heart disease are at greater risks. I remember my onc asking me, if I heart disease ran in my family.

    These woman should definatly avoid AC then.

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited February 2010
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    My oncologist said he only gave AC-TH to node positive patients and TCH to node negative. I had read the studies before I saw him and there was no way I was having AC-TH anyway - the SE's were too scary for me.

  • weety
    weety Member Posts: 371
    edited February 2010
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    Lilah and Lexis and anyone else who might see this and know something. . .

    I did my 6 TCH treatments and had the herceptin weekly with the chemo.  Then, when done with chemo I started doing the herceptin every 3 weeks.  The problem is, my onc (and I got 2 other opinions--one agreed, one said it wouldn't matter) decided to stop my herceptin treatments during radiation since I had gotten a mastectomy and the radiation would be on the chest wall (on the left side so they didn't want to take the chance of double damage to the heart)  So I got my last herceptin treatment the week before starting rads and haven't had one since.  I am finishing rads up this next week and made an appt to get my next herceptin treatment, but now my onc wants to hold off because now I have to see a gyn-onc because of a "suspicious" complex cyst they found on my ovary.  (I swear, the madness never ends.)  It is almost positive that I will be doing at least an oopherectomy surgery in a few weeks, and possibly the whole hysterectomy as well (my mom died of uterine sarcoma) so now my onc doesn't want to give me the herceptin until we figure out all this  ovarian/uterine surgery stuff.  Meanwhile, it's been 6 weeks since my last herceptin treatment.  I'm so afraid that this lapse in treatment is going to allow the cancer to come back!!!!  I know sometimes women with low MUGA's take a short break, but if I do the surgery in a couple of weeks, that will mean at least 2-3 months without my herceptin!  I feel like they are so worried about this new ovarian situation that they forgot about the fact that I HAVE HER2+ BREAST CANCER and I NEED MY HERCEPTIN!  I sound like a drug addict (LOL!)

     Has anyone else taken a herceptin "break" for longer than a few weeks?

  • helena67
    helena67 Member Posts: 16
    edited February 2010
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    Hi

    I don't see why you would have to take a break with Herceptin during radiation and surgery? I had Herceptin during radiation (though on right side) and also kept taking it during oophorectomy. Had no problems. Maybe if you have a history of heart problems? Difficult to advise you - but if I were in your shoes, I would keep taking the Herceptin. Although even if you do take a break, you will still benefit. Herceptin stays in your body for weeks and weeks.

    Good luck.

  • lexislove
    lexislove Member Posts: 277
    edited February 2010
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    Weety...

    What a pain in the you know what!

    I had 2 days during rads, that I did Herceptin and rads on the same day. I remember asking my onc.." Should I stop my Herceptin for rads?" His response...definatly NOT.

    I really dont know why you would need to stop. I had a mastectomy too with immediate tissue expander placed and did rads.

    I didnt stop Herceptin for anything. Well....I timed my mastectomy to be 2 weeks after one Herceptin treatment...I then continued with Herceptin on time...mastectomy drains and all.

    I really...dont think you have anything to worry about. Im pretty sure that you will have the benefits from Herceptin regardless.

    How have your muga scans been?

    I agree its so hard to comment here...but get your uterine issues figured out first.