Molecular
Targeted TherapyFinding a true Cutting-Edge Oncologist
In the case of the most dangerous cancers that are discovered after they have spread, such as (but not limited to) Lung cancer and Ovarian cancer, the official treatment --- called the FDA Standard Protocol --- does not help patients live much longer than an extra few months over what they would have lived with no treatment at all. The next-generation approach (see "Molecular Targeted Therapy" link) is the 'Cancer Cocktail,' however not enough new drugs yet exist to make this an official FDA 'protocol.' Over the next 10-15 years, it is hoped, the Cancer Cocktail will become the new standard, and hopefully the most dangerous cancers can be rendered more manageable at least, or even sustain a long-term remission.
However some "renegade" Oncologists are attempting to implement an early form of Molecular Targeted Therapy today, (this is called "Translational Medicine" --- taking new promising research out of the lab and applying it to first-line treatment of the otherwise terminally-ill right away). These few cutting edge Oncologists are combining Chemotherapy (although not necessarily the FDA's standard Chemo recommendation, see the menu link "Better Chemo") with whatever "make due" Targeted drugs that seem as though they may help: some drugs originally approved for other cancers --- as well as drugs not designed for cancer at all, but showing promise on specific cancers none-the-less, in the lab and in early trials. Employing drugs not actually designed and approved for the specific illness being treated is known as "off label" use, (use that is completely legal, but not practiced by most Oncologists).
Breaking from the FDA "standard protocol" is not the way to win friends and influence in the Medical Profession, which is highly political. As a result, these early pioneers of Molecular Targeted Therapy do not advertise. They tend to trade information amongst each other, via certain web sites, and at Medical Conferences, and by devouring every new scientific paper published in cancer research. These early pioneers of the "Cancer Cocktail" are entirely self-taught; there is no text book.
Large facilities, such as Hospitals and Cancer Treatment Centers, do not break with protocol, (though M.D. Anderson in Houston is reputed to push the envelop more than any other). While it's entirely probable that a private Oncologist using Targeted Treatment may work out of a large Hospital, it is highly unlikely that this doctor will actually be a part of that Hospital's own oncology department.
If the Oncologist doesn't believe in testing the patient's blood for cancer "marker" levels at least every 3 weeks, then run. Many, many lung cancer Oncologists will out-and-out refuse to perform such tests. Though the Oncologist will say that such tests are not "accurate," the real fact is that an Oncologist treating late stage lung cancer is virtually guaranteed of losing 100% of their patients within a much shorter period of time than anyone would like, and a record on paper would only help to encourage lawsuits.
The meaning of the "value" of a blood marker is unique to each person. So that although testing cancer blood "markers" may indeed not mean much after the first couple of cycles, with each successive cycle this marker begins to convey an ever increasing clarity of what the cancer is doing. Using these blood test results, the lab can provided the Oncologist with a computer-printed "graph" that tracks visually how well the current chemo regimen is performing as compared to past cycles.
When the Oncologist tries to explain that it is more accurate to compare x-rays of the primary tumor after each cycle to see how and if the size of the tumor is changing, understand that this is like saying that "analog" is more accurate than "digital." RUN! FAST! FASTER! Only frequent cancer blood marker tests will be a valid long-term guide of how treatment is progressing.
And above all, think twice about being treated by an Oncologist involved in "Clinical Trials" --- this is often incorrectly painted as meaning that such a Doctor is on the cutting edge; nothing could be further from the truth. Most of the the "Top Research Doctors" are not at all likely to be studied and up to date on the vast knowledge-base needed to practice Molecular Targeted Treatment. They supervise trials for drug companies for a specific drug, and frequently may actually under-treat their patient in order to keep that patient "qualified" to enter the trial (treatment with certain drugs may disqualify a patient; also, a patient must usually go off all other potentially life-extending medication for a month beforehand in order to qualify! They don't start off by telling you THAT part.). For such Doctors, treating ill patients is frequently a method of recruitment for their upcoming trial. So beware the "research doctor --- top rated in the field," if you are a newly diagnosed patient and want the best possible first-line of treatment!
As an aside, in 2003 it became front page news that "Research Doctors" --- who are not paid to conduct Trials so that there is no bias --- receive handsome non-monetary perks from the drug companies for their services ... and it is all legal. If the Trial doesn't go forward, there is no perk. And enough patients are needed to allow the trial to go forward. (You figure it out). No, this doesn't mean to imply that most doctors engaged in running Clinical Trials are necessarily Machiavellian --- they doubtless see what they are doing as trying to help make important discoveries for the future. BUT --- many are also blind to the hypocrisy inherent in recruiting subjects for clinical trials by allowing the patient to believe that the trial is a real opportunity for the patient to get cutting-edge treatment ahead of everyone else.
Yes, every once-in-a-blue-moon we hear a story on 60-minutes about a patient given 2 weeks to live who enrolled in a trail and was cured. But the odds of this happening are practically 0, even though there are indeed those lucky few that have benefited. The trial is essentially designed to help the drug companies evaluate new drugs and get FDA approval. The patient must cease all other possible options of treatment, when the odds are overwhelming that they will not benefit substantially, if at all, by the trial. And if one is under-treated during the first line of therapy, and then must go off all drugs to go into a trial --- possibly getting a placebo in the trial on top of all else --- then the trial is simply not being conducted for the primary benefit of the patient.
Now, if a patient is genuinely convinced that they will not live much longer than 8 weeks and wishes just to contribute to the future of drug development by taking part in a Clinical Trial, then that is a different matter. But the situation is rarely presented in that way. Most patients are being SOLD on the trial ... even if the doctor never says anything that was technically a "lie". If you are a newly diagnosed patient and want the best possible first-line of treatment, stay away.
And if an Oncologist begins to speak in terms of "Clinical Trials" during the same discussion as how to approach the first-line of treatment even if they themselves are not recruiting --- run, for all the same reasons cited above! The first-line of treatment is what a cancer patient is banking on.
If seeking an Oncologist currently pioneering the initial efforts to practice Molecular Targeted Therapy in an effort to help treat patients, (as opposed to a doctor researching and testing a drug), a reasonable place to begin looking for a list of recommendations is by contacting one of the several laboratories testing cancerous tumors for sensitivity to a wide variety of chemotherapy agents. This is a process currently utilized by only a minority of Oncologists today, (most insurance companies won't cover the cost, and most Oncologists wouldn't have had any training to read and interpret the results), and it seems probable that doctors genuinely on the cutting-edge would tend to utilize this kind of service. The Research and Testing facilities may be willing to discretely recommend a few names:
Bath Cancer Research (Bath, England)
Contacting the American Medical Association or the Administrator at a prestigious Cancer Treatment Hospital for such a list is not likely to be very helpful. There isn't one. Targeted Therapy Oncology is not a "category"; there is no such database. The few Oncologists who really utilize a Targeted treatment approach today just "do it" --- in fact they probably don't want to be on anyone's list right now.
And with lung cancer, don't be sold by an Oncologist who might state that they will indeed use the Targeted drugs Iressa and Tarceva; those drugs are already approved and have been added to the FDA standard protocol for lung cancer as later options. Unfortunately two "later option" drugs do-not-a-cocktail-make. (Cutting-edge oncologists are using these two drugs today in the first line, but not on the day before, during, and following chemotherapy ... to avoid any possible conflict with chemo drugs. The FDA standard protocol does not include them in the first line.)
Though cancers may have a Targeted drug or two approved as part of the "newest" standard protocol for that specific cancer, this is not, however, a true implementation of Molecular Targeted Therapy --- "The Cancel Cocktail." To have the best chance at an effective cocktail today, as many Targeted Drugs as possible are required, and with the small number that are today known, this is still not enough for a cure ... but it probably may help manage the illness for a longer time. Thalidomide and COX-2 Inhibitors are two obvious examples of "off label" drugs used as "make due" reagents in Targeted Therapy today, (although some COX-2 inhibitors may increase the odds of a heart attack with long-term use, surely their short-term use is justified if they can meaningfully help to fight an otherwise fatal cancer). Use of the drug Gleevec in treating Lung and Ovarian cancer (designed and approved only for Leukemia) is another example of "off label" use. (see the menu link for examples of many off label drugs for possible lung cancer use).
When seeking a "true" cutting edge Oncologist, ask about how the doctor feels about putting the patient on the drug Thalidomide, and then watch for suppressed signs of fear. Because of lawsuits in the 60s over Thalidomide, Doctors are terrified at the mention of the word. Because Thalidomide may tend to be effective with most solid cancers when used in a cocktail, it should probably be the first drug on the list of any Oncologist truly practicing today's early incarnation of Molecular Targeted Therapy, along with Avastin and Tarceva. It is hoped that the combination of Thalidomide, Avastin and Tarceva may prove to be very synergistic as the part of the "Molecular Cocktail" that starves cancer cells of the blood needed to survive --- and they will probably work in MOST solid cancers, although nothing is yet a certainty. But for a patient who will otherwise likely live no more than a year or so, it is a pretty risk-free bet.
By "true" cutting edge Oncologist, it is meant an Oncologist who is well self-educated in, and who will be aggressive in, the actual treatment beyond mere rhetoric --- of which there will be plenty when Oncologist and patient first meet. A "true" cutting edge Oncologist will have no quams about using Thalidomide right away from day-one along with many other "off label" drugs in a cocktail as part of the first-line treatment, along with a Chemo regimen arrived at through lab testing of the biopsy. (Very few Oncologists today will run this test. Most insurance will not pay for it. Most Oncologists will start a lung cancer patient on the FDA Standard Protocol, which consists essentially of one of 4 possible Chemotherapy drug combinations. Which option will work best within the cancer cells of any given patient is largely guesswork. When a test is run on a biopsy, it will examine up to 30 different possible drug combinations).
While the biopsy is out being tested for indications of the best drugs to use for the cancer treatment, (a process that requires a week to 10 days, or so), the patient will likely undergo radiation treatment immediately; then starting Chemotherapy and Targeted Drugs once the report on the most favorable Chemo and Drug combinations comes back from the lab. This protocol of Radiation first is the preferred approach at M.D. Anderson, the premiere cancer treatment facility in the US.
Above all: a "true" cutting edge Oncologist who practices Molecular Targeted Therapy in its early incarnation today will not be in fear of deviating from the standards published by the FDA. These standards are outdated by 15 years. For the advanced lung cancer patient who would otherwise only likely have months to live, their best shot is to utilize a custom-designed treatment protocol based on which drugs are today showing positive results in the laboratories and trials ... not from where things were at 15 years ago. To utilize the FDA Standard Protocol with late stage lung cancer is a virtually-certain death sentence. The statement "Well, first let's see how the chemo does ... and then we can always experiment or do Clinical Trials," is meaningless when the most successful chemo-only protocol today will only extend the life of a late stage lung cancer patient by a matter of months as compared with no treatment at all.
Sadly, 99% of the Oncologists practicing today will not veer one iota from the FDA Standard Protocol. They will call promising anti-cancer drugs such as Thalidomide "dangerous" and attempt to justify their position by saying that not enough is known about the interaction of such drugs with Chemotherapy, and they will refuse to use drugs from other cancers that show "off label" promise in lung cancer as well. Yet NOTHING is more "dangerous" to human survival than lung cancer cells!
In many, many cases, plenty is known of these "make due" drugs from studies ... and many drugs approved for other solid cancers have demonstrated safety and effectiveness with lung cancers. But such drugs already showing safety and promise in the treatment of lung cancer will simply not be accepted as an official protocol by the FDA without years of additional testing. A patient with a life expectancy of months does not have the luxury of time. To repeat: NOTHING is more "dangerous" to human survival than lung cancer cells! Certainly not Thalidomide, nor other established cancer drugs.
When an Oncologist refuses to use off label drugs for the most deadly cancer, lung cancer, then it is their own future that they are worried about ... not the patient's. If the Oncologist is of this mindset, and if the patient's goal is to extend their life for as long as possible, (ultimately in the hope that other "cancer cocktail" drugs coming out will render their cocktail even more effective in managing the disease in the future), then find a different Oncologist, and FAST!
Cecily switched Oncologists after finally finding one of the few self-taught practitioners on the cutting edge; an Oncologist who created a highly effective initial Cocktail/Chemo combination. Cecily's CA-125 "cancer blood marker" level --- which had been accelerating at 100% per cycle in her 3rd cycle at the "Cedars Sinai Comprehensive Cancer Care Center" --- now slowed by 2/3rd in the next cycle (a net acceleration difference of minus 66%). In cancer treatment, that's a homerun.
And there were two major new anti-cancer drugs that would have soon been available to be added to her cocktail ... but tragically just a little too late. The drugs Erbitux and Avastin hit the pharmacy shelves within 2 weeks of Cecily's passing from complications caused by a "malignant pleural effusion," (cancerous-fluids secreted within the outer walls of the lungs). Tragically, we will never know what additional gains might have been made if Cec had lived just a little longer to add these two promising new drugs "off label" to her already-effective cocktail.
We are on the cusp of a revolution --- the notion that at any given time "it is too late" for a late-stage lung cancer patient is not necessarily true for those taking the "cancer cocktail," of which Cecily was a pioneer. If the patient's organs are still functioning, then the right cocktail ... (when successfully formulated for a given individual patient, since everyone responds differently) ... should theoretically be capable of reversing the cancer. We will only know more, though, when Molecular Targeted Therapy moves from out of the closet and into the mainstream. That's probably at least a decade away ... possibly much further.
After years and years of testing, the first generation of custom-designed Targeted drugs are coming out on a more frequent basis than ever before. Each new reagent may make the cocktail even more effective. Make certain that all of the doctors on your team are giving you full access to this emerging opportunity, as many doctors still regard the idea of reversing late stage lung cancer as an impossibility, and opt to under-treat in order to allow the patient to expire as soon as possible on "compassionate" grounds, and for "quality of life" issues. This is an approach that a pioneering patient in Molecular Targeted Therapy does not want to run into, especially in the even sadder instance of those relatively few who get the disease at a young age and who want to fight like hell for the best chance of being put into remission by a successful Targeted Therapy. With much stronger immune systems than an elderly patient, a young victim of lung cancer has good reason to want to fight. Chose your team wisely, for the odds are that most Oncologists and Specialists will be of the "old" school of thought.
Find that rare, self-educated Oncologist who will also make use of the many available "off label" drugs in formulating a custom-designed cocktail, as well as running tests on the biopsy before selecting the Chemo option --- and find a like-minded support team of Specialists who will go above-and-beyond the standard attitudes in fighting to suppress fluid complications in late-stage lung cancer patients, as part of a team-effort to keep the patient healthy for a long-enough time to allow the "cancer cocktail" the best possible chance at helping to slow down the cancer's advance, and hopefully reverse the spread and send it into a remission.
[The opinions expressed above are strictly those of this website creator. They do not represent the opinions of anyone else. There may be patients, especially of advanced age, who wish for exactly the opposite. They may not wish to endure the pain of additional treatment. Or they may be very satisfied with the long and wonderful lives that they have lived, and may not want a long pioneering effort with a new protocol and an uncomfortable fight during their later years. But the system of treating late stage cancer patients MUST respond to the distinction, and offer treatment accordingly.]
CUTTING-EDGE CANCER INFO
Finding
a 'true' Cutting Edge Oncologist
The
Early Formula for "Cecily's Oil"
The
Need For New Drug Approval Laws
60
Minutes Story: The FDA and Politics
AP:
FDA Silences Internal Critics