HER2 Positive-anyone 10 years out?
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lago - that is exactly what my Onc. told me. I'm going with that!!
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And the stats could be even better with trastuzumab alone for certain groups, or with trastuzumab and lapatinib. The studies just haven't been done to know.
AlaskaAngel
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I do believe they did test H alone and found it worked better with chemo… that's why we are given both. Doesn't mean that H doesn't work alone, it can and does but the stats show that it works better in conjunction with chemo. They really wanted H to work alone so they wouldn't have to give chemo but it just didn't work out that way in the studies.
But in AA's case, stage I with no nodes, H alone might work just as well without all the SE or long term effects from chemo.
And remember there is a percentage of women even stage IIB (40%) that didn't need H or chemo.
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Penny - I was on Tykerb for a year and took 4 pills a day. Initially, I experienced a lot of gastrointestinal problems....frequenting the bathroom, etc., but once my body got used to the drug, I hardly had any side effects at all. By the time I finished Tykerb, last summer, I was feeling fine. I was on Tykerb and Herceptin at the same time and I continue on with my Herceptin alone. Hope this helps.0
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Well, in my situation it is impossible to know whether trastuzumab alone would have been less helpful, as helpful, or more helpful than chemotherapy because I did not have trastuzumab alone. I might not have needed any treatment other than surgery (which is also true for most stage 1 breast cancer patients) -- although probably HER2 positive stage 1 patients, like triple negative stage 1 patients, probably are at higher risk than the average stage 1 patient to some degree.
What is not understood is that the belief that "trastuzumab plus chemotherapy is more effective" is not correct. The only thing the studies have shown is that "trastuzumab plus chemotherapy is more effective THAN CHEMOTHERAPY ALONE.
A.A.
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From cancereducation.com
Trastuzumab (Herceptin®) and Paclitaxel (Taxol®)
What's even more important is, if you give the Herceptin® together with other anti-cancer drugs, particularly a drug called paclitaxel or Taxol®, it at least adds to the efficacy of the Taxol® and might actually increase the efficacy of Taxol® dramatically compared to what the Taxol® itself would do. Similarly, Taxol® may dramatically increase the ability of the Herceptin® to kill cells (we call that synergy). That's a real possibility. There's still controversy in the scientific community about which drugs are the best drugs for getting that synergy, but everybody believes that there are some drugs that are synergistic. Where one plus one equals three, or one plus one equals five, when one is the drug and the other one is Herceptin® together, they're that much more efficacious.
So that's very, very exciting, and that's become absolutely standard in the treatment of advanced breast cancer. We don't know yet how that works in the adjuvant setting, but that's one of the very important questions that we're asking right now. There are going to be several large trials done in the United States, that will be asking, not only does Herceptin® work in the adjuvant setting, but what's the best way to give it, with the chemotherapy, after the chemotherapy, and so on.0 -
Wow, Im really getting into this debate, Thanks ladies for your insight, research and studies as to all of the above investigations, and as much as I dislike the words stats ! we are currently stats in the making and or in the process of becoming, well at least thats how I feel ! That's life, in our world !!!
I wish I had of gone down the adjuvant setting pathway when it was suggested to me, now I know...
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Yes. Adjuvant use of trastuzumab without chemo may be a very different story (whether it is more beneficial or less beneficial without chemo) due to patients having an intact immune system, a healthier patient, AND a lower tumor burden at time of drug action.
A.A.
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just a little note for Her2 gals. I went to my Onc for my "almost 4 year appt" this week and discussed my last year of Hormone suppression (Zoladex) with him. I am one that did fine with the chemo,Herceptin, but has absolutely suffered from the hormone suprression. I am deflated, no energy, body aches every symptom under sun while no estrogen. I have 2 Onc's one who is one of he most respected Onc's in BC works at U OF A Teaching Hospital and in conjunction with MD ANDERSON, the other is "top doc" for AZ. Both very well respected and part of many ongoing studies, research etc. That being said they are a bit different. The one who is at teaching hospital is also called by many ONCs for advice ....he has been adamant that once I hit the 3 year mark I would not need hormone suppression. My other who is a bit more conservative asks that I wait until 5 years. Since I have young children and I want to do all I can to prevent a recurrance I have stuck with the 5 year plan. SO......at this most recent appt we had a detailed discussion about what comes next.
He said that after 5 years I could go back to my premenopausal status and be off of ovarian suppression. I asked what about all of the woman who get a recurrance later like 6, 7, 10 and 15 years out. And he simply stated "that is not the kind of cancer you had" the studies show that the high grade 3 Her2 cancers almost always come back in first few years after treatment and that the this outweighs the hormone positive component. He cited studies even prior to Herceptin with Adrimyacin alone with same results. I asked him for a couple of studies and he said to call his nurse for references. I am not sure I will follow up as I now have 2 opinions telling me the same thing and at some point you have to go with intuition. The thing to think about some time is what type of SE's and long term problems might one have from just the ovarian suppression? For me it is increased cholesterol and joint issues (severe).
I am not telling anyone not to do hormone suppression, as I have done for 4 years now and my step mom who is a 18 year survivor did tamox and femara for 10 years. I am just saying that look at the whole picture and have some confidence that with HER 2 cancers most will not recur after 5 years so that is piece of good news after all of the bad news.
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mmm5 it makes sense. I think if our tumors were grade 1 we might have a higher chance of recurrence after 5 years. Still I do think triple positives are at a higher risk after 5 years than those who are triple negative or just HER2+. I have also seen a study that states hormone therapy for more than 5 years is beneficial for Lunimal A t ypes but not for Luminal B types. Maybe the reason is we just don't recur as often after 5 years.0
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Lago, my impression is the same as yours.
I am one of the stray triple positives who has not done trastuzumab, and who chose to stop hormonal treatment with tamoxifen after just 1 3/4 years -- hardly definitive by any means, but just a genuine piece of what evidence there is out here floating around about it.
A.A.
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Actually, what I think is the most exciting of all is that IF the trials for the use of metformin for cancer patients pan out (along with offering post-treatment postmenopausal weight gain risk control, which is not a small item in itself) one real biggie advantage it may offer is that whereas chemotherapy apparently does not cause apoptosis of stem cells, metformin is thought to do so. And metformin trials are not limited to breast cancer, but are being done for other cancers as well.
A.A.
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Hi Alaska Angel
Have you seen this article in The Lancet, January 17, 2012?
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)61847-3/abstract
It seems to suggest that Herceptin and Lapatinib together may be more effective that Herceptin alone.
So grateful to cancer researchers everywhere!
Best wishes
Alice the Cat
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Yes, ATC, I have, and I agree, it is about time there was more research into options that are less toxic and so likely over the past 10 years to be helpful for dealing with HER2 positive bc! Thanks to the researchers and the women participating for giving that gift to those of us who are HER2 positive, for sure.
AlaskaAngel
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Just finished reading a stat that said someone dies from BC every 74seconds...glad I logged on and read this thread. It has lifted my spirits. I have had progression recently when I was really feeling quite invincible. First time I have had a scan go the wrong way and have to admit it has shaken me.
I will bookmark this so I can read about the good stuff
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Alice, interesting article. I progressed on Herceptin alone. MDA recommended chemo/surgery/chemo, then maintenance on Tykerb (lapatinib) and Herceptin. 22 months now with NED! The onc said we would discuss stopping after 5 years. (I was originally given a couple of months to survive when the progression was found.).
It has not been easy, but worth it! Going to go play with the grands (and a new great-grand) next week.0 -
i'm new, i am not clear about the test of my aunt, she's just diagnosed, having spent a surgery, tumor about 1cm, GRADE II, no lymph, the receptor test is: ER(+6/8); PR(-); HER-2/NEU(3+); KI67(+)10%.
PLEASE, i want to know what it means, how bad is it? Thank you
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Hi Peace - Sorry to read about your aunt. ER=estrogen receptor, PR=Progesterone receptor, HER2=human Epidermal Growth Factor Receptor 2. Your aunt's tumor cells were positive for estrogen receptors, meaning the cells had receptors on their surface. The cells were negative for PR. When the tumor cells have estrogen receptors on their surface they can use estrogen to help them grow. Doctors usually treat ER+ cancer with anti-estrogen therapy like tamoxifen (daily pill) or an aromatase inhibitor (also a pill). HER2 is a sign that the cancer cells are more aggressive but fortunately there is herceptin (also called trastuzumab) which works to destroy HER2 positive cancer cells. Herceptin is usually given as an infusion with chemotherapy. KI67 is a measure of how many cells in the tumor were actively dividing. The grade is a measure of how different the tumor cells are from normal breast cells. Grade 1 is abnormal, grade 2 is more abnormal and grade 3 is even more abnormal. I hope that helps. Your aunt has several treatment options and it is often a good idea of get a couple different opinions about treatment.
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Thanks Omaz that helped me too, I was not absolutely clear as to the KI67 part also, and a well-defined post-reply, a lovely thing to do for peace
first post, Cheers. 0 -
Peace, if you want to learn more about the information in your aunt's pathology report, the main Breastcancer.org site will take you through every line of it in the section called Your Diagnosis (click to go to the link, than follow the sub categories). You can also use the main site to search for any unfamiliar terms, treatments, tests, medications or other subjects you want to learn about.
Judith and the Mods
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Thanks Omaz and Moderator. I'm from asia, i dont know where i could ask about the test result. it's very kind of you for rely, that helps me much. I will discuss with her doctor. Hope that there are all those new drugs in my country.
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peace - tamoxifen has been used for many many years and is available in generic form. The aromatase inhibitors are somewhat newer medications. Best wishes for you and your aunt. This site has lots of information as the Moderators kindly provided links to. Will you be able to go with your aunt to the doctor?0
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Thanks so much for this thread, women. My doc has given me a really good prognosis since I had a "complete pathological response" from the neo-adjuvant chemo before my surgery, but sometimes I wonder if I've heard the whole story because so many say how awful Her 2 positive is. Thank you for the information!
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Profbee HER2+ is awful if it doesn't respond to Herceptin. Looks like you got complete response that's great.
Also note that not all HER2+ will progress. There is so much more they need to learn.
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Thanks, Iago. My response was to the Taxol/Lapatinib. I'm on H now, but my EF is at 50, so they may stop me for a while to let my heart repair. That scares me, but it's so great to hear awesome stories!
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Lapatinib also seems to be having wonderful results too. Some people do have to stop for a bit. Are you being treated in Boston?
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Yes, at Dana Farber, but I'm getting my Herceptin locally. I'm back to work, so not having to schlep down to Boston has been GREAT. I'm still tired though. The Taxol/Lapatinib was TOUGH, and I think it was mostly the Lapatinib part, but I'd do it again!
Congrats on being done! I've delayed my nip surgery for a bit so mom can be here to watch my 5-year-old for me. I didn't mind delaying, but now I am SO looking forward to having those procedures behind me. I saw your comment earlier in the thread about being so knowledgeable about something that you wish you weren't. SO true! Hard earned knowledge!0 -
I'm originally from the Boston area. I figured you were at Farber or MGH. My parents call MGH their condo in the city. They live down the cape. They too hate the schlep but won't go anywhere else.
My nips and tatts came out great. I'm so glad I did the nips instead of tattooed nips. Not sure if that comment was from me. I did say something about newbies getting thier PhDs in breast cancer after this journey.
BTW did you have no nodes or do they not know?
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It's great to hear you say that because I've been wondering why I'm going to do nips when all my life I've just tried to hide them, right?
My PS says I want them and I'll be happy to have them. We'll see! No node involvement, thankfully, but I can't recall how many they took.
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You should get a copy of your final pathology report for your records. They took 10 on one side and 4 on the other with me. All clear as well.
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