The Truth about Cancer

And to be clear, I in no way blame the researchers. I think they're doing and want to do the best they can. I feel sorry for them actually, because I'm sure they're in the line of work TO save lives. It must be frustrating as hell to be stifled at every turn.

I understand the research/ trialling process. Although it is cumbersome, I admit to having mixed feelings about the need for this. Clearly, there is a need to balance many factors, with regard to who can participate in a trial and who can't, to see if is the drug effecting outcomes and not other factors. Safety is is also a consideration, and you can well imagine (as we have seen) the outcry when a drug is approved and then turns out to do great harm. We talk about targeted and individualized tx. That alone speaks to the fact that bc is, indeed complicated. Yes, profits by the drug companies are obscene but I, personally, don't believe there is a conspiracy to suppress or withhold a bc cure or better tx. Again, I think my own positive experiences color my view and in general, I'm not much on conspiracy theories, nor does anger or bitterness play much of a role in how I view the world.But, being stage IV, I hope for a cure just as much as anyone else. Is there a "truth" about cancer? I wish there were one truth about it. That would make all of this far simpler.

Caryn

yes, leggo, you are correct. Herceptin, plus chemo , are now used in an adjuvant capacity for HER2+ patients. I have occasionally read of some doctors prescribing Herceptin without chemo, but I believe this is uncommon.

Caryn

Regarding the standard recommendations for the use of trastuzumab, which include the use of chemo...

That is where the trail of "scientific evidence" as the basis of treatment wandered off from reality in regard to very early stage bc. We have evidence indicating that a small number of very early stage HER2 positive bc can recur without the use of additional treatment beyond hormonal treatment, but we have no evidence to show whether chemo is required or trastuzumab is required or both, and unfortunately the treatment for more advanced tumors is trastuzumab + chemo so tiny tumors are treated AS IF both trastuzumab and chemo are necessary.

And Alaska Angel knows that when Herceptin was being considered to be given to early stage HER 2 positive patients, the clinical trials REQUIRED patients to be offered chemo with HERCEPTION VS Chemo alone. Had the design NOT have included chemo it would have been UNETHICAL and not been approved. Alaska Angel also knows that chemo has now been UNSHACKLED from Herception in a clinical trial for older women.

Please don't let it pain you Momine. Like you mentioned, I've done extremely well and I thank my lucky stars, well that, and my awesome cancer consiglieri and people willing to break the rules for me. Where some people are incensed by the crazy treatments their friend of a friend recommends, I've always thought of it as a caring gesture and some have actually helped. Though I do appreciate the empathy, people that are probably far better souls than myself have had it so much worse. There's a lot of survivor guilt that comes with hanging around longer than most and it ain't easy to live with. Just the other day I was in the clinic and saw a kid, couldn't have been more than 25, who was missing his bottom jaw from who knows what kind of hellish cancer. I just couldn't help but be angry for him. Whoever doles out shit in this universe definately screwed up. 

Now that you guys have given me a better understanding of the whole Herceptin thing, I realize that in reality, they have no clue about when and if it should be used. Of course, I've thought that of cancer treatments all along. Kind of like crazy Nancy Grace...throw any wild, potentially dangerous thing out there and see if it sticks.  What i don't understand is why no one ever questions these protocols. Any doctor can prescribe any medication for anything. Do you ever wonder why that's not the case for cancer drugs? Why the prices are so exorbitant? How they justify calling a drug "new", just because they've changed the delivery agent? Why they're so mental about their patents? Why there are so many outrageous stipulations? If you had this, you can't have that, if this didn't work, this won't work, if your eyes are the wrong color, or you're too tall or too short? That's just my sarcasm, but I hope you get the idea. There's something there that just doesn't add up, even taking into account the strict adherance to results (or manipulation thereof) of clinical trials. Everyone's hands are tied when it comes to cancer treatments and I want to know who the hell Pharma companies (some, not all) and the entire cancer industry think they are that they can dictate their cancer drugs' usage. Pretty sketchy and brazen, if you ask me. All I can think of is that they've become too big to fail.

Peace.

One of the first statements my oncologist said to me was that she would give me herceptin without chemo. For some reason she did not think I would be able to do the chemo. She said I was too frail. I have planted loblolly pine seedings from sunup to sundown. It is back breaking work usually done by Mexicans, and I do not consider myself frail. Unfortunately she was right about the chemo. I had an anaphylactic reaction to the second taxotere. After 4 weekly rounds of taxol, I could barely swallow my own saliva. I had to have 2 esophageal dilations. I lost 30 more pounds. At that point I was frail. She waited 6 weeks until I weighed 90 and then I started on weekly herceptin. I will continue on weekly herceptin until I have done my 52 weeks. Some oncologists are willing to bend the protocol.

I, too, got Herceptin alone. I don't think that breaks any protocols. I was speaking more about you can't have drug A, not approved for your type of cancer, you can't have drug B, you failed drug C, kind of thing. And the laughable restrictions put on clinical trial candidates. I guess I didn't explain myself very well. 

leggo, yes, having watched many try to jump through those hoops, I understood your focus there. That problem also is not required information during the patient's decision-making process, to "keep it simple" (rather than complete and clear) during the relatively brief time for making decisions about taking drugs that have no definite helpful value for any given individual. Many have no idea that is the case and may limit their participation in trials for the use of other more current drugs until they have already had the original drugs and have relapsed, because that set of circumstances is not required disclosure at time of original treatment

I favor honest disclosure prior to treatment selection -- even if it takes more time and honesty and effort to allow the patient more autonomy.

I have not read this whole thread so maybe you all are already familiar with the book by Peter Huber "The Cure in the code: How 20th Century Law is Undermining 21st Century Medicine. He has quite a bit to say about Clinical trials - "By continuing to channel the development of drug science through trial protocols developed decades ago, Washington now makes it increasingly likely that the science will never get developed at all."

Moderators...thanks for the very informative links about ethics and clinical trials.

Granny...in Eric Topol, MD's fabulous book, The Creative Destruction of Medicine....he envisions a new way in which clinical trials will unfold in the near future thanks to technology and genomics. I cannot simplify his ideas in a paragraph.Instead, I invite you and other sisters to read his book and find out for yourself how a revolution in medicine and research is under way!

I also want to say that I recently had the pleasure of meeting some brilliant breast cancer researchers at Sloan Kettering. They remarked that when they set up their lab three years ago, their best guess was that they would make new discoveries every 12 to 18 months. Instead, their discoveries are occurring close to 8 months in time.

So, if anyone is frustrated with the lag time in breast cancer research and ultimate new treatments, rest assured, the view is not that dreary. In fact, I'm getting very excited at the thought of December's annual San Antonio Breast Cancer Symposium which is right around the corner....

Voracious: Muherjee's The Emperior of All Maladies chronicles how each new Doctor/researcher either validated or repudiated or added to what had come before in cancer. Those early Doctors/researchers did not have to go through the extensive process required today. Most of the early patients were not even asked for consent. The thing is if there is something out there that would help and that is all there is it seems unethical to deny it. So ethics goes both way. I realize big pharma is afraid of lawsuits. How sad that is a deciding factor. There is now a vaccine in Phase II trials for Her2+. It is closed to new participants. There is no Phase III listed that I can find. Phase II will not be completed until December 2015. One needs to be 1-6 months out from herceptin. The results thus far are promising. I would like that vaccine, but right now that does not appear to be possible. Thus for me the changes you mention may come too late. Huber says we need a new FDA.

granny...there have been very important books written about the history of medicine and how ethics affect discoveries and treatment.The Remedy is a recent book written about tuberculosis... How it was "discovered" and how the first treatment were developed could NEVER occur today!

Since the DH has a rare "orphan" illness, I have dealt with the FDA on a number of occasions because the DH receives a treatment listed under "compassionate use." I've dealt with hospitals' legal departments to get their pharmacies' formularies to include his"meds.". I've also dealt with clinicians/researchers who are on the front line trying to find treatments for babies born with catastrophic genetic metabolic disorders. When I see the hurdles that families and doctors go through and the tedious and mundane paperwork that stands in the way of treatment, I do get frustrated. However, and this is a big however, I don't think the FDA is guilty of PREVENTING treatments from getting to those patients that need it. The halls of hospitals and the FDA are fill with stories about how lives were lost BUT those same halls are also filled with lives that were saved. Read The Creative Destruction of Medicine and learn how clinical trials ARE beginning to change. Also read The Remedy. One of the most startlingly things I learned from readingThe Remedy was how long it took discoveries to make it into practice. I shouldn't have been that surprised having already known how long it took antiseptics to gain its way into usage.The bottom line is that we have ethics in place to try to protect us from danger. Without ethics, is an invitation to danger.

kay....the links the moderators included discuss Nuremberg! We must not lose sight of how we got to here! You are very, very correct and the example you gave is very much worth repeating!

Just another link that explains the different phases of clinical trials:

Clinical trial phases