HER2+
Comments
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Lago,
Because like other rural people I live so far from any oncologist, I did my treatment through a highly knowledgeable and qualified PCP (internist), based on the recommendations of every-3-month visits with my onc. My PCP is conscientious and dedicated but he can't possibly keep up with the latest on all the disease processes, so he relies mostly on the onc's knowledge. That is what any PCP does, and many patients still are treated under a PCP because they don't have as much direct access to an onc.
Through forums and my research I found the ASCO information indicating that for several years the question had been raised that were was a segment of HER2 positive patients who had worse outcomes with tamoxifen than those HER2's who did not do tamoxifen. I took it to my PCP, who took it to my onc over the phone.
I would think my onc would have known about the research and would have contacted me or my PCP to see if I wanted to continue the drug or not; or, at the very least, he would have mentioned it to me in one of my on-site visits with him. He did not. I was treated in 2002 and the question had been investigated prior to that time. He did probably keep up with the studies. He just chose to exercise his personal bias and ignore the information that I felt was ethically important to discuss with me. There was no indication on the package insert that this question existed for HER2 positive patients, to clue anyone in. I think my onc didn't fail to know or want the best for me, but they do fail to share and they do sometimes have a bias of their own that blocks them from being honest.
Biases matter.
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You are correct in that there wouldn't be much data for herceptin alone at this stage, but I'm sure that will become available in the future.
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susieq58,
What is interesting about that is that trials done by reputably scientific institutions and researchers in other countries DID show 10 years ago that ovarian ablation plus tamoxifen IS equal to the use of CAFx6 plus tamoxifen for patients with + node (HER2 was not considered at that time but would be of similar risk). Guidelines do prefer TCH or AC+TH currently. Yet that option of OA (which is still offered to some patients as a current treatment for breast cancer) is not openly acknowledged to be as effective as CAFx6 plus tamoxifen.
To me, by not openly at least discussing it with patients, oncs are (knowingly or unknowingly) ending up with patients who refuse chemotherapy entirely and are never even offered or realize that there IS the possibility of chosing OA + tamoxifen or an AI.
I know that many people see toxic therapy as being a godsend; I am acknowledging that there also are many of those like me who do not consider it to be a godsend for early stage bc. I think it is important not to force either group to "be like me", since it is fact that chemotherapy is not helpful for the majority of early stage bc patients.
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AA wrote:
"What is interesting about that is that trials done by reputably scientific institutions and researchers in other countries DID show 10 years ago that ovarian ablation plus tamoxifen IS equal to the use of CAFx6 plus tamoxifen for patients with + node (HER2 was not considered at that time but would be of similar risk). "
AA similar risk does not equal similar response to treatment. Her2+ BC is know to respond well to chemo, her2- BC generally responds less well to chemo. So making the leap that treatment with tamox + OA may be equivalent to chemo in Her 2+ BC is not logical.
Also, there are studies that have shown chemo to decrease recurrence in ER+, Her2- BC. Not always. Researchers are trying to figure out which ER+ cancers are likely to respond to chemo and have had some sucess - hence the Oncotype test.
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Orange1,
I am not sure we are completely on the same page; maybe we are...
tamox + OA is equivalent to CAFx6 chemotherapy for the entire group of breast cancer patients (including HER2 positive bc patients) with + node.
There is no way to know whether tamox + OA is or isn't equivalent to TCH or AC+TH (or know by subsets which group it would apply best to) because the trials for OA with those are still in progress 10 years later, and I don't know whether there have been any 5-year preliminary report results or not??? Or if not, why not???
OA + other hormonal therapy may be better than current chemo for some subsets, maybe by age.
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Also, I think the Oncotype Dx is based on patients who used tamoxifen (right?), so without tamoxifen....?
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A question I posted earlier ... did the studies done with herceptin for her2+ cancers include women 65 and over? Do the studies take into consideration older adults greater risk for heart attack, strokes, and other aging problems? We stand at the fork of the road in deciding which path has the greater risk, or less risk. I would love to see a study done that included women 65 - 75. I wonder if the statistics would be different for those older?
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Evebarry, I found this:
Herceptin Heart Risks Clarified for Older Patients
A limitation of many clinical trials in oncology is the inclusion of few older patients. With respect to trastuzumab, clinical trials in breast cancer generally limited participation to women 65 or younger and with good performance status. Therefore, extrapolation of results to older or sicker patients requires caution, the authors wrote.
Given the benefits of trastuzumab and the lack information about cardiotoxicity in older patients, Serrano and coauthors reviewed their own clinical experience with the agent.
Examination of medical records revealed 45 breast cancer patients age 70 or older treated with trastuzumab. The patients' median age at the start of trastuzumab was 75.9, and 11 patients were older than 80. About 90% of the patients had performance status 0-1, 56% received neoadjuvant or adjuvant trastuzumab, and the remaining 44% received the drug for metastatic disease.
The authors found that 12 (26.7%) patients had a cardiac event that had a time to onset ranging from three to 132 weeks after the start of trastuzumab-based therapy. Every patient had at least one risk factor for cardiac disease and eight had two or more risk factors."
http://annonc.oxfordjournals.org/content/early/2011/08/08/annonc.mdr348.full
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Thanks, VR. It sounds so promising!
Most docs are not deliberately obstructive. They just are part of a bureaucracy and trying to make it work for as many people as possible. My personal situation with my onc is just one example of the failure to offer quality care, the individual practitioner bias interfering with best care, and the truly difficult situation it creates for the newly diagosed patient who is not sure what to trust and what not to.
A.A.
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barbiecorn,
If you would like some information about alternative treatments I highly suggest you google Oncology Association of Naturopathic Physicians and find a naturopath who is experienced in oncology in your area. My naturopath recommends women do not begin herceptin unless they take certain supplements (available anywhere) to protect the heart and keep it and you strong during treatment. Her2 is a normal presence in the body and is only when it starts making copies of itself that it becomes a problem (correct me anyone if I am wrong!) and her2 is also present in the sinus cavities and the heart, which is why herceptin affects these areas most.
I did 16 herceptin tx's. I have some real questions about whether it works, or not.
Unfortunately, there is NO way to measure the results in a patient after a herceptin infusion as herceptin does not show up in a blood test. It is expensive...my tx's were over $80,000, thank God I live in Canada.
My naturopath and I were discussing recently that most women are scared into doing chemo and given little time to research alternatives. As well, alternatives are scoffed at and put down by big pharma, of course. Nevertheless, women have survived her2 before herceptin and since it can't be measured, nor how many women with her2+ are alive before herceptin, how do they know which women it has helped? The benefits from chemo are very low, something like 1.2%, and herceptin is something of a mystery drug being unmeasurable - which is strange since I thought science likes to be able to measure results. If a woman survives her2+ after herceptin they can say it was because of the herceptin. If she doesn't make it, they can say herceptin didn't work for her. How very convenient! It's a win win situation for the drug companies.
IF I ever recur, I will not do herceptin or chemo again. Cancer is a crap shoot and my feelings, personally, are that the immune system and p53 gene among others are screwed up, etc. Cancer drugs don't fix either problem. There are antioxidants& supplements & herbs that can help repair the immune system.
Suggest, barbie, you look up indole carbinol 3, quercetin, grapeseed. There are studies concerning these supplements and her2+. Alternative medicine, (so called) is the natural way to go, opposed to the unnatural way with drugs. It's all your choice.
Good luck
tucker PS: Here is one source about DIM/I3C (known as indole carbinol) as well as some other supplements and her2+: http://jdc.jefferson.edu/cgi/viewcontent.cgi?article=1001&context=surgeryfp&sei-redir=1&referer=http%3A%2F%2Fscholar.google.ca%2Fscholar_url%3Fhl%3Den%26q%3Dhttp%3A%2F%2Fjdc.jefferson.edu%2Fcgi%2Fviewcontent.cgi%253Farticle%253D1001%2526context%253Dsurgeryfp%26sa%3DX%26scisig%3DAAGBfm2dxO9OVPOlE9CvIOTyK_tuQYeI3g%26oi%3Dscholarr%26ei%3DJ_xgT4-BKumo2wWA2OWvCA%26ved%3D0CCUQgAMoATAA#search=%22http%3A%2F%2Fjdc.jefferson.edu%2Fcgi%2Fviewcontent.cgi%3Farticle%3D1001%26context%3Dsurgeryfp%22
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I was not scared into anything. With all treatment for cancer: alternative, chemo, hormone therapy or targeted therapy like Herceptin they don't know for sure if it will work on any specific individual, unless it doesn't. Really the same thing can be said about alternative medicine.
I asked my onc "How do we know if this will work." She honestly answered "we don't. There are are some women that don't even need further treatment past surgery. The problem is we don't know who they are. If we did we wouldn't be giving them chemo."
There is no known cure, alternative or otherwise. Tucker you want to support alternative that's fine but saying chemo/herceptin is a scam and doesn't work is just inaccurate.
They do have stats on how many women survived without chemo that were HER2+. A woman with my stats had a 40 our of 100 women not needing additional treatment. Chemo,Herceptin and hormone therapy brought my states up to 84 women of being alive and NED in 10 years. (2 die of other causes).
Herceptin can only increase those numbers. The reason why they don't have stats out for Herceptin is it hasn't been used for early breast cancer for 10 years yet. It was only approved as standard treatment 6 years ago.
Read up on the studies for Hereceptin. It has been a real life saver for many of us HER2+ gals. It also works more effectively with chemo. This is not an insurance scam. I highly recommend you read the book "The making of Hercepin, a Revolutionary Treatment" by Robert Bazell. The drug company actually didn't want to continue making the drug. Towards the end of the book this onc talks about how her patient was dying and she broke the double blind testing by checking to see if she was on Herceptin. She wasn't. The onc got the company to give her the drug. The tumors shrunk before their eyes.
Barbie remember Tucker had had the treatment. You might also consider complimentary. Doing both natural and traditional.
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Robert Bazell's book is excellent to read and I wasn't HER2+!
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Hi lago,
I have been reading about herceptin since I was dx in 2008. I didn't say it was a scam. Unfortunately it does not work with everyone and there is no way to tell who will benefit and who will not. That was my point.
My other point is that women who are dx with breast cancer are not even TOLD about what is available in the natural, alternative world. Were you? Doctors don't lay it out in front of you and say, 'well, here's the chemo/herceptin route, and here is the alternative route'. Women should be told, and told clearly, that CAM is available. I had not even heard about it before I was dx. Suddenly, we are experts on a very complicated topic. I am not saying that herceptin should be ignored, just that it needs more study and I don't want to be a lab rat. The article I cut and pasted, above, explains the synergy between herceptin and some natural alternatives. I would have gone this route but didn't know until AFTER the conventional treatment. Also, chemo isn't quite a scam, but the statistical benefit is not high compared to the risks. The stats are only 1.2% or so benefit of chemo. I cannot say alternatives would not do better because Big Pharma does not do studies on these alternatives, natural products.
I have also seen the movie "Living Proof" about Dr. Slamon who created herceptin. While it can work for SOME women there is no test to see who would benefit. I know of no other product that is given to humans w/o some type of track record, especially at $80,000 a tx.
tucker
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I don't believe that 1.2% benefit number. People used to die in droves from cancer before chemo.
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Not sure where you got your stat of 1.2% but in my case women with my particular diagnosis (biology, tumor size, age etc.) the number my onc gave me was much much higher.
Pharmacies shouldn't be expected to fund alternatives. The funding should be coming from somewhere else. You're right, pharmacies are for profit and therefor have no interest. This is why governmental research would make more sense.
There is no reliable test to see if chemo, AIs or Tamoxifen works either. The reason why there is not test is there is no reliable test to see if your cured from cancer so how can they test if Herceptin is working… but in women that have chemo/Herceptin before surgery they can see if it's working. That's how they know the drug works in the first place.
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I'm with you Tucker, I ain't going the chemo/rads route if the beast shows up again. If they did not work the first time, there is no logical reason they would work the second time around. There's only so much my body can take and I don't feel it could take it again.
And I'm another one who was scared into chemo and rads - BS, onc, it was panic big time meanwhile, this thing had been growing in me for yearzzzzz
I would not have agreed to the chemo I was prescribed if I had been told the truth about its consequences. I would not have agreed in the first place to a fine needle biopsy which required rads to clean up the mess. I wish I could undo what was done but I was so so unprepared
I better leave this thread, I'm not HER pos.....
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Everything is still in the experimental stage. You pick what experiment you want to be in.
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Study showing chemo benefit:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2363690/
There are many other studies about the 'benefit' of chemo. To each, his own. I believe women should be told the truth and given alt/natural options. Period
tucker
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lucy,
I was an experiment before I was born, since my mom was given DES, a synthetic estrogen, in the 1950's, which has subsequently caused many reproductive problems and now breast cancer. All the studies said it was safe. What a joke.
I'm done with being a lab rat.
tucker
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Tucker that study is for patient perceived benefit not actual benefit.
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I hear ya, Tucker.
I'm so sorry to hear about your Mom being given DES. Was it even tested on rats by our pals at the FDA? I remember the thalidamide disaster too.
You see all these studies talking about "benefit" but they don't explain that benefit may mean less recurrences not living longer from all causes. Herceptin is one of those that hasn't been followed long enough to know if it is significantly better for OVERALL SURVIVAL than no Herceptin at ten years out.
I don't think they even did placebo studies on Herceptin. Maybe somebody could check?
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Yes they did do double blind. My onc was involved in it.
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Good, let's see the documentation. Source, please?
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Tucker, is this the statement you are reading from which you draw the conclusion that chemo only has a 1.2% absolute benefit?
The patients were asked,
for a hypothetical situation, to indicate the minimum benefit (in terms of improved 5-year disease-free survival) to find adjuvant chemotherapy
acceptable. In the chemotherapy group, the median benefit was 1% at all 3 measurement points. -
Thanks lucy. It's been an interesting "journey" to say the least!
Here's another study from Australia that is interesing re: stats.
http://www.curenaturalicancro.com/oncologists-criticize-chemotherapy.html
If the pro chemo folks can find a study that says chemo confers a huge benefit, like 50% from taking chemo, please let me know. I'll accept lower %, but I'm not seeing anything more than 1-5%. Also 75% of oncs in Canada would not give chemo to their family, nor would they take it. That study is available online but I don't have time to google it. I will find and post it later today.
tucker
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Lucy it was the phase III trail for Herceptin before FDA approval presented at the 34th annual meeting of the American Society for Clinical Oncology. I don't have the link to the trail but some of the stats are in Bazell's book I reference from above.
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Lago, then maybe you could find the actual citation for us in Bazell's book. Thanks so much. Fact-checking is so helpful, isn't it?
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This is silly. Lucy I have stated my source. If that's not good enough for you buy the book. It's $5.64 + shipping used on Amazon
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tucker, as Lago said, that 1% benefit was what the patients were willing to do chemo for. The study looked at patient's attitude toward chemo, not the actual benefit of chemo.
If you read the study further on, you will see it says the following:
On average, 94% of patients indicated a willingness to accept
adjuvant chemotherapy for a 15% (or less) improvement in 5-year
disease-free survival, which is the mean benefit in 5-year disease-free
survival for early-stage breast cancer patients under the age of 50
with positive lymph nodes according to a recent overview of
randomized trials (EBCTCG, 1998).So, there you go - some stats from 1998 saying the mean benefit of chemo is 15% improvement in 5 year disease-free survival for patients under 50 with positive lymph nodes. I believe that would be the absolute benefit conferred, not relative, but I'm not 100% sure (I'd have to see the 1998 study to be sure). There is a big difference in these numbers. If my 5 year recurrence risk is say 30%, and chemo drops it down to 15%, that is a 15% absolute improvement, but a 50% relative improvement.
I'm sure there are newer studies, but since I just read that in the study you presented, I wanted to share it with you. Here is the link to the full study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2363690/pdf/84-6691836a.pdf
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