HER2+
Comments
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hmm...too bad there are no trials. I might need the HER2-Affitoxin ... alternative to herceptin.
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I'm sure the researcher is saying 'too bad' too
"As a translational researcher focusing on pre-clinical studies, I did all I could to show the potential of Affitoxin. I have also developed and validated in pre-clinical studies an Affibody based HER2-imaging agent that might be used for in vivo assessment of HER2 expression before and during HER2-targeted therapies I do my best to get clinicians interested in this approach," says Capala.
Professor Capala and his translational research colleagues at the NCI have laid the groundwork of preclinical data for HER2-Affitoxin. At this point, subsequent characterization and human trials will be up to a company or other institution to take over. "
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Yes Eveberry - ((((hugs)))) - I am going to check out this new possible alternative to Herceptin--- Maud - thank you for the information.
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OMG, THIS is what I am talking about when I say that the research system is broken and this is why we don't see more progress. It's not about people not caring enough. Obviously, this guy cares and he has gone as far as he can within the academic research world, but now he needs pharma to take over to see if this is a drug that could actually be brought to market. Dennis Slamon (Herceptin creator) went with a venture pharma company to get the job done - this guy is hoping that a pharma company will be interested, but it appears he doesn't know how to make that happen. Of course, he has probably published all of his research at this point, so all of his info is public domain - a lot less attractive for a for-profit company. However, BC is so common that there is a lot of money to be made if a pharma company picks it up.
Anyway, perfect example. I wonder how many other potential cures get stalled because of this sort of thing?
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I hate to repeat myself...but read world renowned cardiologist Eric Topol, MD's The Creative Destruction of Medicine. He explains how antiquated the present research system is. He is a medical visionary and suggests how research SHOULD be conducted using technology. The digital revolution is NOT just for EVERYTHING else.....He said it needs to be embraced by medicine NOW!
In reviewing the book for the Boston Globe, Dennis Rosen explains, " The new technologies will, Topol argues, bring about radical changes in the ways scientific knowledge is processed and shared more quickly and broadly; patient data collected, with real-time monitoring and diagnosis; and treatment becomes increasingly individualized. He predicts much of this will be driven by patients and that doctors and others who might be inclined to resist these changes will be under pressure either to embrace, or at the very least, to step aside and not interfere with them. And these looming developments will improve not just patient care but the efficiency of the entire health care system."
Rosen goes on to explain how most care is driven by "data derived from population based studies to inform treatment decisions. Currently, there is considerable pressure from insurers on physicians to adhere to guidelines based upon data from population studies, and those who do not are penalized under the banner of "pay for performance.'' Yet biology is more complex than standardization allows for, and simply drawing straight lines through uneven scatters of data points doesn't change this fact."
Dr. Topol suggests that population based studies are no longer necessary and that personalized medicine...MEANING...treatment that is suited for an INDIVIDUAL, is possible. We already have glimpses of that happening. Eve, didn't you mention that the doctor was going to put a heart monitor on you? That will give the doctor PERSONALIZED information about YOU. Combined with genetics...as well as specialized pathology....(don't we all have our tumors examined so they can figure out what course of treatment might work for us), medicine IS moving in that direction. Dr. Topol believes that researchers will need to EMBRACE all of the technology that is out there to conduct more accurate information about who and what they are studying so their findings will be more applicable to the patient being treated.
http://www.amazon.com/Creative-Destruction-Medicine-Digital-Revolution/dp/0465025501
Using Dr. Topol's model in the future, I think it will be far easier for those "underdog" researchers to get their research out of the labs,and then into the information highway that eventually will lead into the hands of patients and their treating physicians. We're seeing glimpses of it today. Aren't we all technologically savvy and grasping for THAT information here that might help us??? I think in the coming years that savviness on the part of consumers is going to accelerate the technological revolution of medicine.
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VR--thanks for the heads up on the book. We tend to appreciate the same types of books!
Bessie--thanks (again!) for providing the research and concise reporting of FACTS. And for calling people out as needed. BCO is all the better for your presence here.
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barbie corn, i sure hope you let us know in the end what you decide to do. good luck. barb
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VR, I hardly think your conclusions apply to this NCI researcher....
"I have also developed and validated in pre-clinical studies an Affibody based HER2-imaging agent that might be used for in vivo assessment of HER2 expression before and during HER2-targeted therapies"
On the other hand, I'm betting that there's a whole lot of lobbying on behalf of Herceptin to kill Affitoxin in the egg
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Maud, I most humbly disagree.... Because once the information is in the hands of the consumers...as Dr. Topol suggests, there is going to be a ground swell of interest from the BOTTOM UP....Rather than the TOP DOWN. Pharmaceutical companies will NO LONGER be driving how research is conducted.
Why not read the book before you comment.....
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Maud...the same is true for the NCI, NIH and academia. They will be FORCED to do research in a new way.....
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Yup. You wouldn't believe the crap the NIH funds. I will read the book. Thank you for the recommendation.
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barbiecorn just to let you know there is a woman in my building that was diagnosed just after me. She's in her late 60's. Her stage was higher than ours (smaller tumors but in her nodes so stage III). Anyway she did the Taxotere, Carboplatin, Herceptin (6 chemos and Herceptin for a year). She did great. She just had her exchange surgery a few weeks ago.
I'm not trying to convince you but do know that they monitor your heart closely. I know I didn't want a cocktail that included Adrimycin because it too has heart issues (and IMO worse than Herceptin). Many of the times the heart issue with Herceptin can be reversed.
You don't say if you are hormone positive. This also factors in. HER2+ /hormone negative is more aggressive than if you are hormone positive… actually without herceptin it might even be considered more agressive than triple negative. This is something you can discuss with your onc. Your onc should be giving you information on 10 year survival/no eveidence of disease with and without additional treatment.
Also remember you can always stop treatment if it's too hard on you. Breast cancer does tend to strike more older women than younger so you are right in the middle age wise.
I was also scared of chemo/herceptin. I'm not saying I didn't have some issues but nothing was life threatening. You won't get every side effect. Hell I didn't even get nausea and my taste changes were so minimal that I could eat as I did before. I was even working out after most of the treatments. When I was on Herceptin alone I was a little stiff in the thighs but not too bad. I'm actually stiffer now on the Anastrozole (generic Arimidex for hormone suppression)
In my case specifically, there was only a 40% chance I didn't need additional therapy after surgery. My onc gave me stats with hormone suppression and chemo. The problem is there is no 10 year stats out for Herceptin because the drug hasn't been standard care for early breast cancer for ten years yet…but given that this aggressive cancer tends to show distant mets in the first 3 -5 years the numbers do look amazing.
Good luck and let us know what you decide.
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VR, I was not commenting on the book, my reading list is long enough, thank you. I said the comments in your post did not apply in this instance.
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Maud, my comments regarding the book are QUITE relevant to the discussion because Dr. Topol believes the present system of conducting clinical trials is BROKEN and he is the FIRST doctor that I've read about that offers a vision on how to CORRECT the system so that researchers can get a fair shake in getting their work off the ground and into clinical treatment.
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VR: Because once the information is in the hands of the consumers...as Dr. Topol suggests, there is going to be a ground swell of interest from the BOTTOM UP....Rather than the TOP DOWN. Pharmaceutical companies will NO LONGER be driving how research is conducted.
I'm sure Barbiecorn and Evebarry would love to know how to exactly go about this ? Any suggestions ?
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Chapter 2 of the book gives an outline on how it can and will be accomplished. Stunning! He gives us the blueprint. He says that consumers (patients) are going to DEMAND personalized medicine. Here's an excellent review of the book:
http://ronankavanagh.wordpress.com/tag/creative-destruction-of-medicine/
"Contrasting this personalised consumer experience he describes the current ‘orientation of medicine'. Doctors, and the medical education system that produces them, are out of touch, conservative and slow to change. Todays' ‘Evidence based medicine' tends to be based on studies of populations rather than on individuals. A population based study of a drug which claims to reduce the risk of MI by 36% for example, sounds much less impressive to a patient when they realise that 100 individuals will need to take the drug in order to prevent one MI. He also criticizes the use of surrogate end points in studies (e.g. like cholesterol / LDL) and the development of expert based guidelines around these and puts mass population screening tests like PSA under the microscope. He introduces the idea that it is now possible, using pharmacogenomic studies, to perform real evidence based studies based on individuals rather than populations."
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The insurers dictate medical care and treatments and the botom line is they will not pay unless they are forced too. We saw the recent fighting over attempt to change the healthcare system. We know there are dishonest investigators conducting clinical trials for money and "sometimes" caught when they make the news. The current regulatory agencies can barely monitor the current NDA submissions. How do you get around clinical trials? Data collection is still required and individuals are grouped into subpopulations based upon medical hx and demographics. This would take YEARS to revamp the current process and regulatory agencies who are not open to change....... Maybe some great ideas but would it ever become a reality in our life time --- doubt it.
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cp418...You would LOVE the book!!!! He talks about the insurers... They will embrace the revolution because they don't want to spend money unnecessarily. The revolution is happening already. When Dr. Topol spoke at January's Consumer Electronics Show in Vegas, he had everyone in the audience on their feet. They get it! Venture Capitalists get it. Consumers get it. He thinks it will rapidly occur around the year 2020. That's not too far in the distant future......
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I believe there's wayyyy too much emphasis on "studies" here at BCO. Reality check: the doctors themselves don't read the studies, even when treatment guidelines change .... I posted this yesterday on another thread for Kaara, the study in question dates back to 2004 !!
Radiation still used despite evidence of little benefit to some older breast cancer patients
http://medicalxpress.com/news/2012-03-evidence-benefit-older-breast-cancer.html
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VR,
You and I share the visionary belief that the present system is broken, and are interested in moving toward a better one ASAP. In terms of advising patients who have to make a decision in the present, is where our differences of opinion sometimes are. I am interested in the book you referenced.
But how fast change might occur is a crystal ball question. As you know, I would be glad to have some kind of answer one way or the other just to the question of how much of the value of chemo is actually due to ovarian ablation vs cell kill (since cell kill is thought not to include stem cell kill), given that OA can be accomplished through other means. But it is taking over a decade to get that answer , just in the time since I was lied to about that question by my onc.
I'm glad that you are optimistic. Who would have believed in 1980, for example, that we would have something like the internet through automation by the 1990's, available worldwide?
At the same time, I think Professor Capala and his NIH colleagues have likely spent a considerable length of time trying to "go there" during a computerized age, and have not yet been successful...
A.A.
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The advice here should be used to form questions to ask your doctor.
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Anne W,
I agree with you, Beesie is exceptionally good at providing helpful information. I'm sure that is her true intention.
Beesie, as a non-attack of any kind, do you have any statistical answers or explanation to my earlier question in behalf of Barbiecorn?:
"What about Barbecorn's question? If the data is impressive in terms of clinical trials, where is the missing information she asks about? There are patients who end up not doing standard therapies, in part because of economics, and family or job priorities, etc. There are those who don't simply because of true choice, and there are those part because of not having access to it. but who are not in any clinical trial... so where are all the medically sponsored bean counters in counting those patients, and where is the data?"
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Birdlady, I agree completely. Ultimately we should make our treatment decisions based on discussions with our doctors, and getting multiple medical opinions can be very helpful. When I present medical studies, I do so in the hope that they provide information that the reader can take to her doctor to discuss.
Maud, I disagree that there is too much emphasis on research studies here at BCO. I think that not enough attention is payed to studies on this discussion board (and particularly, in this forum). I present information from research studies in order to provide a counter-balance to other things that are posted here. Someone saying that their next door neighbor did X treatment and Y happened is, frankly, a completely useless piece of information. A sample of one is meaningless. And without full information about the diagnosis, everything done in the way of treatment, and the complete results, we really don't know what happened or why. Someone saying that "chemo doesn't increase survival rates" without providing back-up information or source information is not worth the 2 seconds it took to read that statement. Yet around here information like this often is given more weight than extensive research studies that involved hundreds or thousands of women. I pop in here occasionally to present research study data to try to keep at least some level of balance. And more importantly, I present the source of the data, so that others can read it for themselves and if they wish, dig further into the topic. If they discover a more recent study that provides new information that is different from what I presented, that's great! Or if they determine that I misinterpreted the results and they correct me on it, that's great too! Then I will have learned something new.
In the end, everything that is said here should be taken with a grain of salt and no decisions should be made based on information presented here, without first discussing it with your doctors.
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AA, I just saw your post.
There are databases of all women diagnosed with BC. These databases record diagnoses and recurrence rates and survival rates overall, for all women regardless of the treatment they have.
And there are research studies that look at a select group of women who agree to participate in that particular study. These studies provide specific comparisons of the results of different treatment protocols. Some of these studies may be very large (thousands of women), but overall it's only a small percentage of women diagnosed with BC who participate in these types of detailed studies. Consider that over 250,000 women are diagnosed with BC in North America every year.
The detailed results of women who are not in clinical trials or other research studies are not recorded anywhere, to my knowledge. This includes the vast majority of women who do have traditional treatments, and those who choose to opt out of traditional treatments. These women are in the first mass database I referenced (which has very general recurrence and survival results only, not broken down by diagnosis specifics or treatment protocol) but not in any other.
That's my understanding but I'd be interested if anyone knows any differently.
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Beesie, if our own doctors don't pay attention to the studies, why should we ? And why should BC sisters have to battle - armed with studies - when discussing amongst ourselves ?
ETA, plus it deters a lot of sisters from joining in the discussion because it either loses them, or they lose interest because of the lingo
Radiation still used despite evidence of little benefit to some older breast cancer patients
http://medicalxpress.com/news/2012-03-evidence-benefit-older-breast-cancer.html
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I don't know it seems my onc pays attention. She even gave me a study to explain why she was going to put me on a certain drug… then after the San Antonio conference the findings were different. She called to tell me this and changed the plan… I was not put on the drug. I don't think it's fair to say doctors don't read studies.
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Beesie, thank you. Are you referring to the cancer registry, as being that general database?
The clinical studies are important to get some basic understanding through an organized and more precise analysis. The bias of them at this point is the failure (for whatever reasons, ethical or not) to do a true comparison between standard toxic therapies and any newer promising therapy that has less damaging effect on the immune system. That bias (right or wrong) is explained away, with the assumption that the bias (and its effects) just do not "count" or have any relevance.
The problem is that the system ends up without the results of those people who are not likely to be in clinical trials. The actual clinical results for the people who chose not to do standard therapy that is required for clinical trials are not counted.
But they do count.
I'm not blaming anyone here for the bias that is part of the clinical trial process as it presently exists.
I do think it should be openly acknowledged that doctors are basing their recommendations on the NCCN guidelines, which are based on that bias.
A.A.
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As an example question to consider--
Recently the mods posted the results of a study indicating that older women who did not do standard treatment had worse outcomes than younger women.
That sounds important to consider when turning down standard treatment.
But I still wonder if there is or is not a definite beneficial effect obtained with the use of OA, even for older women who are assumably postmenopausal, that should be officially tested, measured and counted rather than just "assumed" and never clinically proven not to be of equal benefit (if not greater benefit) as toxic therapies?
Otherwise, it is quite easy to jump to the conclusion that more older women should do standard therapy.
A.A.
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AA - there are plenty of retrospective studies done and published. The ones I've seen regarding HER2 and treatment with chemo/herceptin versus no chemo/herceptin show that treatment with chemo/herceptin increases long term survival.
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Hi susieq58,
I wouldn't argue with that. What they don't show of course is the results for those people who have, like evebarry, chosen to do trastuzumab alone. So, the results of the trials are biased in favor of adding chemotherapy whether it is genuinely helpful or not. Trials only have those people in them who are willing to do standard treatment as part of the trial, and they only have in them the people who have the time and ability to do clinical trials. That excludes those who forego standard treatment for economic reasons or personal reasons. Those people do exist. They are the invisible number that are not counted, even though the clinical results of their choice does, in fact, matter.
A.A.
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