HER2+

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. "

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?

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.

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

Maud...the same is true for the NCI, NIH and academia.  They will be FORCED to do research in a new way.....

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.

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. 

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."

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......

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.

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?"

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.  

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.

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.

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.