When do most recurrences for HER2 happen
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AlaskaAngel - When I met with the second oncologist last year she was explaining to me that herceptin plus chemo worked better than chemo alone for HER2+. I asked well what about herceptin alone vs herceptin plus chemo and she said they hadn't done it. Maybe it's because the women in the herceptin alone group wouldn't be getting 'standard of care' treatment?0
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Alaska Angel...you are her2+++ and you didn't take herceptin? And you were diagnosis in 2001? And without standard care treatment, you are alive & well?
The two breast surgeons I've seen of late both strongly suggest herceptin and chemo. I am open to herceptin without the chemo. The chemo part doesn't make sense. From what I read and understand herceptin locks onto our her2+ receptors stopping them from multiplying. If they are no longer aggressively multiplying then the cancer cells with the her2+ receptors are no longer fast moving cells. If they are no longer fast moving cells then the chemo won't kill the cancer cells with the herceptin locked onto it because chemo only kills fast moving cells? BUT...our immune system, the killer cells sees the herceptin locked onto the cancer cell now as foreign and goes to kill it...where if the herceptin wasn't there it would most likely believe it to be a normal cell.
Did that make sense? It's logical to me. For that reason it seems that chemo only weakens herceptin job and of course it suppresses greatly our immune system which needs to be strong to kill off all foreign host.
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Yes it's FSH is for the range listed with the mIU/mL values but it's Estradiol for the pg/mL value
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lago - Ahh, got it, thanks.0
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From what I have read they have tested Herceptin without chemo and found that patients did much better with the combination of Herceptin/chemo then just Herceptin alone. I don't think Herceptin automatically changes the grade of your tumor. Fewer cells maybe dividing but I'm not sure if the ones that continue to divide grow slower or are more similar in shape to normal cells.
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evebarry wrote:
Alaska Angel...you are her2+++ and you didn't take herceptin? And you were diagnosis in 2001? And without standard care treatment, you are alive & well?
Yes, evebarry. The trials for it were in progress when I was diagnosed and apparently my "top-of-the-line" onc was waiting for the results and never told me about them -- although I would have only qualified for one of the trials I think, because I was node-negative T1c. I was about 2 1/2 years out by the time the trial results were available, and he didn't offer me trastuzumab then either but I asked about it, and then he said that I could have it but that he wouldn't recommend it for me because I was "so far out from treatment that I didn't need it". I ended up declining it.
What was really, really bizarre on the part of oncs at the time the trial results came out was that at the very same time that they freely admitted that the entire first 2 years after diagnosis is the most risky time for HER2 recurrence, they also restricted the recommendation for the drug for those who missed out on receiving trastuzumab to ONLY "those who were no more than 1 year out from treatment".
If you don't "get" how stupid that is, read it again.
It is those kinds of decisions made by oncologists, affecting so many breast cancer patients, that are (pardon me) quite inadequate.
To Omaz: Yes. Chemotherapy has been deplorably inadequate in changing the picture for breast cancer patients. But because of the notion that applying something that is so toxic is bound to be effective in killing cancer cells, it became the "standard of care", even though it doesn't work very well. So, we continue to play that same song over and over as being essential as the basic treatment, and "add" newer treatments to it, under the idea that at least we are still getting some effect on some patients, hoping that the additional treatment will (like with trastuzumab) do even better.
But what is not discussed is that when a substance is used for treatment on the many different characteristics involved in breast cancer, it can 1) fail to affect the cancer, 2) reduce the cancer, or it can 3) increase the cancer.
That 3rd possibility rarely occurs to patients, but in any scientific application of treatment -- and each one of us is an "experiment," because it is still not possible to definitely say that "x" treatment will work for any particular patient) -- #3 is a possibility. I tend to see it as a probability, but to what degree I don't know. Consider also that when one gets chemotherapy, one always is given other variables as well, such as blood boosters, steroids, etc. When clinical trials are conducted, how much of what happens that is the result from any of the variables involved is not rationally analyzed for each variable in the mix.
I personally believe that may be what is happening to some of those who have a "good" prognosis, and then end up recurring early anyway. Maybe I should say it a different way. I believe that using genuine scientific principles would include separating out EACH of the variables for its effects, with and without each of the other variables, LONG before applying such a blanket practice of requiring chemotherapy as a "standard" variable with any new treatment.
Oncs do not mention what percentage of breast cancers actually end up being matched to the "right" chemotherapy, and we don't think to ask. My understanding several years ago was that just under 20% of us actually end up getting the "right" chemotherapy for our particular cancer. Some didn't need the chemotherapy in the first place, so the chemotherapy had no effect. That may not be current, so why not ask your oncs and come back here and share what you find out.
With all that we have to learn at time of diagnosis it is nearly impossible to do much in the way of critical thinking. I've had more time than most.
AlaskaAngel
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Lago, if you can point me to any trials completed that proved that trastuzumab alone didn't work as well as trastuzumab plus chemo, I welcome that information. They are now conducting a few stray trials such as using it for some situations where a patient cannot tolerate chemotherapy, and there is at least one trial I think for elderly breast cancer patients, but I don't think it has reported out yet.
Again, they did the original studies comparing chemotherapy alone to chemotherapy plus trastuzumab; the trials were NOT done compariing trastuzumab alone to chemotherapy plus trastuzumab. The frequent statement that "they" found that "chemotherapy plus trastuzumab" was found to be "more effective" is in regard to the fact that it was only compared to the use of chemotherapy.
AlaskaAngel
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AlaskaAngel I am not gettng into this with you. I have read the book "the making of herceptin." My onc was also one of the oncs involved in the initial trials of Herceptin. She actually doesn't like chemo but knows right now it's the best we have.
You are entitled to your opinions and theories but the information you posted about chemo is not correct. Chemo is effective in many cases. From what you posted you make it sound like very few breast patients will remain NED and it's only a matter of time before it comes back… for early stage that's just not true.
If you do some simple research of your own you will find my statement is correct. This is not an obscure fact.
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lago _ I couldn't find any articles that tested herceptin alone compared to chemo plus herceptin in a clinical trial. I think we may have talked about this last year. Maybe the herceptin only studies are in the metastatic setting?0
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AlaskaAngel - I think statistically there is an advantage to having chemotherapy for certain breast cancers. At the therapy calculator at lifemath.net I can see the advantage in my situation. I also think the docs acknowledge that a percentage of women are 'saved' by chemo while many others have it and were not going to recur anyway - that is the way I understand the Adjuvant Online results that my second onc consult gave me. The trouble is that I just didn't know what group I fell into - the group that wasn't going to recur or the group that does actually benefit from chemo. And no one at this point in medicine could tell me that so for me I trusted my oncologist with his many years of experience and did the treatment he recommended. I still don't know what group of women I fall into.0
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For what it's worth ... I can't find any studies that tested Herceptin alone on early stage breast cancer.
Now, each to their own, but since the stuidies that can be found site that Herceptin with chemo has significantly improved the outcome of HER2 patients I'd say the benefit out weights the risk. I'm certainly not an expert but I've done enough research and reading to confirm for me HER2 is nothing to play with. I would not be comfortable being diagnosed with any invasive breast cancer & HER2 and not taking Herceptin.
To the original question ... my oncologist has told me that his personal experience is that he has not had a single HER2 patient have a recurrence if they remained NED for three years. He is rather renowned in the field and was Kay Yows doc. I trust him and am hoping that I help promote his findings. :-)
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alaska angel, How much metformin do you take? just curious
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Thanks Plant - 3 years - starting from surgery? I am glad to read that. I'll try not to hold my breath!0
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Ok 1st didnt read all the post but wanted to say I was dx in 2007 with stage 3A at 28yrs of age. I did chemo a/c mast and more chemo taxol+ herceptin. It took me longer then the year to complete hercp. due to heart issues. I did finish herceptin in July 2009! I celebrated my 4yr in early Oct. and about 2 weeks later the "fun" began. I had a lump on my mast scar that turns out to the beast. So here I sit 4yrs out threw the book at the beast, chemo, mx, rad, and I have to say it did not work! The 3cm mass they took out with unclear margins (mnd you the 1st time my 11cm was with CLEAN MARGINS) says that even though I did standard of care 4yrs from dx and almost 4yrs since surgery I am back to fighting to the beast! I dont think anyone can say if you are X amount of years out it will not be back just not true!
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I agree, I think it's hard to predict. You can look at statistics and
Bell curves, but there will always be individuals that fall
Outside of the "norm." my onc recently said that
If you are ER+ AND Her2+, theoretically it could come back
Further out from dx date, since your body is
Producing estrogen for years, even small amounts.
Clearly different doctors may have slightly different
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My cousin Nancy HER2 + also just celebrated her 7 YEARS Clear, had chemo for 18 weeks, had 4 surgeries on same breast to remove margins also Herceptin for 1 yr and just celebrted her 7 yrs on Nov 2nd of this year, he daughters Birthday
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CANCER SUCKS!!!
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Amen, Omaz.
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EK/KJ's Mom -*sigh* that really, really sucks! I'm so sorry you couldn't get Herceptin the first time around. I'm glad it seems to be working now.
Please forgive me for saying this, that sort of possibility is the exact reason I can't imagine not taking Herceptin if offered, even if it meant doing some chemo. Of course it doesn't completely rule out recurrences (seriously sorry Evy) but I do believe it dramatically reduces them!
Evy - I know you're just starting with this new diagnosis but I hope they don't find it anywhere else. Maybe then all that you did to fight it will not seem in vain.
Omaz - You know I don't remember if he said from date of Surgery, Chemo, or what. I did chemo before and after surgery. I'm going to consider from the date of surgery for this instance for myself, which was April 8th, 2010. Funny though I'm considering my date for total number of years "out" the date of my first chemo, Nov. 23, 2009. That probably makes no sense. LOL!
Edit ... I meant to say thanks to Terry for sharing her cousin's story. Seven years is quite a milestone!
Yes, oh yes, Cancer SUCKS!
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Hi All,
I don't blame anyone for having faith in what they have chosen to do and for the practitioners they have chosen or for doing any treatment, whether or not it works just for a few, or for choosing not to do any treatment. All of that is entirely a matter of personal choice.
However, I do see this thread as a chance for all of us, including me, to educate each other in what is rumor and what has some basis in fact.
Cancer is so complicated and so difficult to deal with that it takes all of us providing what we have learned, to help each other make decisions.
One of the blind spots we have is that we tend not to think critically because we want so badly for treatment to work, not just for ourselves but for each and every one of us. Critical thinking does mean taking the risk of being willing to sometimes be discouraging, as well as sometimes being encouraging.
I think this thread has been a very good discussion, regardless of our own individual choices and experiences. It is educational.
AlaskaAngel
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Starella,
I take an extremely low dose of 250 mg (half of a 500 mg pill) daily, with a meal. The studies about the effects of metformin with breast cancer are still being done so I don't have proof for this one, but I think this might just turn out to be highly beneficial in either delaying recurrence or preventing it for those who end up with weight issues that then increase one's risk. It may even be found to be more so than chemotherapy, as long as one does ovarian ablation by other means.
A.A.
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Plantlover,
Thanks for emphasizing the key point here so that others don't get confused about the value of trastuzumab. I too do definitely think trastuzumab is valuable and worth trying as a HER2 positive. What isn't proven at all is whether the addition of chemotherapy is useful or more harmful, particularly for early stage bc. Unless it becomes possible to predict absolutely which of us benefits from any particular chemo drug, it is just one of the variables and as such, it has the potential to cause recurrence. Chemotherapy drugs are considered carcinogenic.
A.A.
AlaskaAngel
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Lago,
I agree with you -- for early stage bc, most will remain NED, in part because so many never needed any treatment other than surgery, and in part because trastuzumab has made a difference. However, I differ with you about the basis for use of chemotherapy, particularly for early stage bc. It seems that chemo likely is helpful for some group of bc patients but at the same time, the recurrences for other patients pose the distinct possibility if not likelihood that there are also those whose recurrences are caused by the chemotherapy. That is what is not openly said and has to be said. The same is true to some degree in regard to radiation treatment.
I chose not to do trastuzumab and by pure chance that proved to be a reasonable decision for me. Far less was known about it, good or bad, at the time I was making the choice. I decided that the onc I had knew at least as much as I did about it so I followed his recommendation.
AlaskaAngel
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AlaskaAngel-You hit on something for me, I think herceptin was helpful for me it kept the beast at bay for two years (i finished herceptin in 7/09), however not so sure about a/c, I was dx the 1st time while prego with my son and did 1 round of a/c, the plan was due to rounds have baby, finish and then consider lump....that did not happen I did one round of a/c and felt another lump forming under the mipple needless to say we changed course and my son was born at 32 wks (he 4 now and healthy) and I did mx but I did continue with a/c for 3 more rounds as my onc said this was the tried and proven method! I then did taxol+herc. after taxol I did rad. I dont regret my decision to do chemo but I do question if a/c was the right one maybe it was feeding the beast?! Who knows!
Anyway I understand your position might not agree 100% but do understand
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Hi, Friends; I could be worng about this, of course, but I mentioned earlier in this thread that my doctor explained it to me this way.
I was 90% ER and 90% PR positive, and had a 2.4 Her/Cep17 ratio. That meant that 10% of the CA cells were not ER+, 10% were not PR+, and some were not overexpressing the Her2 gene. I asked the doctor if that meant that some of my cancer might not be the same as the rest, that some might be triple negative, not triple positive, and he said that was correct. Tumors are not necessarily uniform.
I asked why I could not have the Herceptin alone and was told that it would not/might not work on all of my cancer cells. For those who do not have high ratios, Herceptin is not the main therapeutic agent. When it was tested, only patients who had a ratio of at least 1.9 were tested, even though those with a lesser ratio had cells overexpressing, too. For me, ACTH had the most potential to address all of the permutations of cell mutations in my tumor. I was told that ACT is the best choice for any of my cancer cells that were not Her2 +.
I think there's a vast difference between a triple positive who is, let's say 30%ER+, 40%PR+ and Her+++, and a 90% ER+, 70%PR+, and Her2+.
Warmly,
Cathy
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I think so too, Cathy. That is difficult to describe and get across. That is one more variable to consider.
There aren't any studies I know of that consider this, but some cells may be affected one way by the treatment, and other cells may end up being affected just the opposite. I wonder if that too explains why someone does well for "x" number of years because most of the cells were treated effectively, but the ones that happened to either not be treated because they were different in the first place or because of carcinogenesis then contribute to a recurrence.
A.A.
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Hi All,
First I want to thank all of you for the info sharing. This is a very good discussion IMO.
I was DX with IDC ER pos. PR neg. Her2+++. Started neo-adjuvant chemo (ACT) on July 2009.
Kept with the herceptin for a year.
Had my surgery on January 2010.
My onc pushed very hard for the neo-adjuvant setting. He wanted us to be able to "see" if the chemo was working. At the time I was afraid we were taking a risk. I wanted to cut off the cancer immediately. He pushed me to wait saying that if the tumor did not respond we could still adjust and maybe find another chemo that would. I know that neo-adjuvant and adjuvant settings do not show differences in mortality but I do find some comfort knowing that I had almost CPR after chemo (path only found tiny DCIS left).
The option of not having chemo never came up.
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It is a well know fact that cancer continues to mutate. Cancer can be treated effectively for a while on certain treatments but then chance so the treatment is no longer effective. Yes you can change from hormone positive to negative, etc.
I also agree that some of us don't need chemo but get it anyway. My onc came right out and told me that 40% of the women with my stats only need surgery… the problem is they have no way of knowing who those women are. With additional treatment of chemo + anastrozole I get a 46% increased benefit (remain NED and alive) over the next 10 years. (They don't have enough data yet on Herceptin)
Oncs see so many patients. They try their best but it is up to us to ask the right questions. My onc told me this because I came right out and asked "how do we know this will work" She came right out and said we don't. And if she knew who those 40% would be she wouldn't be over treating with chemo.
My gut says I'm one of those 40% but I wasn't willing to risk being wrong. Once cancer metastasises there is no going back. I may have had early stage but with an agressive HER2+/large tumor I wasn't interested in playing the lotto.
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A bit of additional info for everyone to consider, in regard to the effect of using trastuzumab alone.
Here is a recent trial for 69 patients that was conducted using trastuzumab alone (for DCIS, not for IDC), titled Neoadjuvant Herceptin for Ductal Carcinoma in Situ of the Breast:
http://clinicaltrials.gov/ct2/show/NCT00496808?term=neoadjuvant+herceptin+breast&rank=1
Here are the results as reported in Cancer, Vol. 117 issue 1, 24 Aug 2010 titled:
Biologic and Immunologic Effects of Preoperative Trastuzumab for Ductal Carcinoma In Situ of the Breast
http://onlinelibrary.wiley.com/doi/10.1002/cncr.25399/pdf
- AlaskaAngel
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I'm having a bit of trouble getting the info to appear correctly for this, but bear with me. Here is another interesting neoadjuvant clinical trial to watch for results. It is currently recruiting participants (NCT 00999804), for invasive mammary carcinoma, including certain patients with locally advanced breast cancers as well as (apparently?) those that are not locally advanced. Even just reading the discussion is interesting:
http://clinicaltrials.gov/ct2/show/NCT00999804?term a=neoadjuvant+herceptin+breast&rank=40
Extension Study of Lapatinib Plus Herceptin With or Without Endocrine Therapy (HEX)
Official Title: TBCRC 023: A Randomized Multicenter Phase II Neoadjuvant Trial of Lapatinib Pus Trastuzumab, With or Without Endocrine Therapy for 12 Weeks vs. 24 Weeks in Patients With HER2 Overexpressing Breast Cancer
AlaskaAngel
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