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Cancer secret to success?! Finding your match!
FINDING YOUR MATCH RE CANCER TREATMENT. PERSONALIZED DIAGNOSTICS (W/RECENT BIOPSY) TESTED IN A LAB FOR TREATMENTS THAT "YOUR BODY" WOULD BEST RESPOND TO -- ALONG WITH THOSE TX THAT WILL NOT EVER HELP YOU. OFTEN IT IS A COMBINATION OF DRUGS. THIS DOC HAS BEEN AROUND FOR DECADES, RESEARCHING, SEEKING JUST THE RIGHT COMBINATION, 1 PATIENT AT A TIME.
I am not a medical person. But I've stumbled upon something remarkable that I have to gather the courage to post. It makes perfect sense to me. If I were having repeated progression I would go to this man in California. And from reading his book, OUTLIVING CANCER, I have learned so much, I can't believe more people haven't discovered him and his stunning record. Outliving Cancer is my dream for every one of you!!!!!!!!! Dr. Robert Nagourney seems to offer potential success for those with stubborn mets who switch from this combo to that, have some success and then, sadly recur. I've been watching this happen for nearly a decade, as a firstliner, battling my own bc. I just don't want to lose one more Sister! And, I've felt helpless until reading this book. At the very least -- please read his book. (I ordered it on Amazon, at the urging of one of our Brothers.) I would never have sought it out but for him. Now, I would be remiss not to share what I've found.
BEEN ON TO A TRULY SUCCESSFUL WAY -- THE ONLY RATIONAL SANE WAY -- TO TREAT CANCER. NOT ONLY FINDING WHAT DOESN'T WORK FOR YOUR BODY BUT DISCOVERING -- IN A LAB -- PRECISELY WHAT DRUGS YOU WILL RESPOND TO, GIVEN YOUR TUMOR'S SPECIFIC, UNIQUE BIOLOGY AND CHEMISTRY. HE DOES THIS WITHIN WEEKS!!!! ONCE YOUR BODY SWITCHES TO THE EXACTLY RIGHT INGREDIENTS, YOU BEGIN TO FEEL BETTER, YOUR BLOOD WORK AND OTHER TESTS START SHOWING RAPID RESULTS AND YOU REGAIN YOUR LIFE.
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Re: Cancer secret to success?! Finding your match!
Thank you Andi, I am going to order his book today. I also want to thank you for your supplement thread, I started adding some of the supplements you suggested and have felt a big difference in my energy levels. I believe the Wobenzym has really helped, I know inflammation is one of my problems. Big big thanks for all your encouraging words, you give me some much hope and thanks to you I envision myself in the future all the time now.
Again thanks for all you do Pat |
Re: Cancer secret to success?! Finding your match!
Pat, your post makes my day. That you are feeling better, more energized, addressed your inflammation and taking charge of your body is why I take the time to share what I've discovered w/a lot of help from my nut onc and the extensive reading I am dedicated to, to enlarge my understanding.
And you're visualizing yourself far into the future is such a key ingredient (I read over and over and over) so you are empowering yourself and helping to determine your destiny. How fantastic is that?!!!!! In OUtliving Cancer I read the details of what I have always Known deep down and seen with the story of Herceptin making it through the clinical trials and tribulations of fighting all the way for funding. When the drug company felt it would no longer be profitable to continue the research, Dr. Slamon forged on, tirelessly, early in the day and well into the night. And his fortuitous meeting with Lilly Tartikoff (in trying to save her dear husband life) brought to him a passion to donate and raise money annually to bring Herceptin into our world. The # of lives saved from all this, fighting bureaucracy (the age old villain of progress) and managing funding while juggling with two hands researching and implementing is altered the course of HER2 bc. I am a poster child for Herceptin which was fast-tracked September 28, 1998, 1 mnth after my 2nd dx, and serving to save my own life. The FDA heard the cries for help from given mnths to live w/ metastastic bc and begging for a chance w/Herceptin. The book, Outliving Cancer, explains the politics of cancer research which is in my humble opinion the reason we haven't made more progress sooner. And Dr. Nagourney gets all this and is on top of all this, fighting all the way to get acceptance of what seems not at all controversial but soundly and amazingly reasonable. While the powers that be fight among themselves, we still have access to the next big step forward in the war against cancer. They can write a book, and make a movie about this stage in advancement when they get around to it. In the meantime, we can become a part of this great story and save ourselves! Andi |
Re: Cancer secret to success?! Finding your match!
GDP,
I see your posting on one of the links. Can you please tell us more about these tests? Why is this not more in use? Inquiring minds want to know . . . |
Re: Cancer secret to success?! Finding your match!
What clinicians like Drs. Robert A. Nagourney and Larry M. Weisenthal do is called Laboratory Oncology. The function of the laboratory oncologist is to utilize available forms of laboratory testing of "fresh" live tumor biopsies to best individualize (personalize) cancer treatment with drugs, radiation, and/or surgery.
These forms of laboratory testing are based on multiple approaches, including traditional anatomic pathology, molecular genetics, and cell biology (typically through the application of cell culture methodologies). The importance of Laboratory Oncology is that there is an exploding growth in the number of anti-cancer drugs, which tend to be only partial and unpredictable efficacy, which are often toxic, and which are extremely expensive. There is a huge need for existing and improved methodologies to best match treatment to the patient. However, this type of methodology is not a simple, turn-key solution. It is more a professional service, more than a simple laboratory test. The "tumor" holds the key to a patient's clinical outcome and survival. Each specimen must be individualized. Performing cell function analysis deserves the same degree of professional time and attention as major extirpative or debulking surgery or radiotherapy. All sorts of specimens, from nice, sterile, viable sugar-cubed size pieces of tumor tissue from a sterile site to mucinous, contaminated low viability specimens from inside the colon lumen to several liters of bloody fluid to fried liver (from electrocautery biopsies of liver tumors) to small needle biopsies to bone marrow and blood specimens. For solid tumors, testing is done with three-dimensional (3D) clusters (microclusters). It takes a lot of work to glean viable tumor cells and get a quantitative yield and separate tumor cells from normal and dead cells and get rid of mucin, and then to isolate the viable cell clusters from the discohesive, single cells and so on. Two specimens are seldom alike. Not infrequently though, patients have a fairly major, invasive surgery primarily to get tumor for testing, so failure (an inevaluable assay) is not an option. Going after a surgical/biopsy specimen has a role in eliminating ineffective agents and avoid unnecessary toxicity and in directing "correct" therapy. There would be a huge advantage to the patient to receive a "positive/sensitive" drug, compared to a "negative/resistant" drug. The time and energy required to conduct an excisional biopsy pales in comparison to the time, energy and lost opportunities associated with months of ineffective, toxic therapy. Reliable, sensitive and specific cell-death endpoints are needed in a functional cytometric profiling assay. At least three different cell-death endpoints are used for every specimen (of the five that are immediately at disposal). You've got to make sure that the signal that is being measured is really from tumor and not normal cells and different endpoints have different advantages and disadvantages, depending on the type of specimen. In certain instances, one cell-death endpoint is biologically more valid than another. When you get the same result with multiple endpoints, there is confidence in the results. When there is disagreement, and there is no readily understandable reason for the disagreement, much more caution is done in using this information for treatment recommendations. Not many medical oncologists understand the scientific method of assay validation and clinical evaluation, based on using real-time, real patient data, under real-world conditions, to guide medical evidence. In short, it is a complex and thorough analysis. Until the controlled, randomized trialist approach (trial-and-error therapy) has delivered curative results with a high success rate, the choice of physicians (and patients) to integrate promising insights and methods like the assays, remains an essential component of this kind of research and treatment technology. |
Re: Cancer secret to success?! Finding your match!
Individual cancer treatment is the way to go, because each person's body is a bit different even though we all have the same organs etc.
There are also other labs that do this work. Sassy mentioned one awhile ago. I know 2 others--------Precision Therapeutics and Caris Life Sciences. Also if you can find a doctor who has access to a machine made in Germany called an EAV machine you might be able to get help figuring out which conventional and naturopathic medicines will work the best for you. |
Re: Cancer secret to success?! Finding your match!
The choice of a lab is not a geographical consideration, but a technical consideration. All of the labs are experienced and capable of providing at least some useful information.
However, the labs vary considerably with regard to technologies, approach to testing, what they try to achieve with the testing, and cost. Some labs have been offering these assays as a non-investigational, paid service to cancer patients, in a situation where up to 30 different drugs and combinations are tested, at two drug concentrations in three different assay systems. The labs will provide you and your physician with in depth information and research on the testing they provide. Absent the assays, the oncologist will perform "trial-and-error" treatment until he/she finds the right chemotherapy regimen. You should have the right chemo in the first-line of treatment. By investing a little time on the phone speaking with the lab directors, you should have enough knowledge to present the concept to your own physician. At that point, the best thing is to ask the physician, as a courtesy to the patient, to speak on the phone with the director of the laboratory in which you are interested, so that everyone (patient, physician, and laboratory director) understand what is being considered, what is the rationale, and what are the data which support what is being considered. Also, there is tumor analysis (genotyping) coupled with clinical trial literature search, which tries to match therapies to patient-specific biomarker information to generate a treatment approach. In other words, information that may help when considering "potential" treatment options (theoretical analysis). Or you can "actually" measure (phenotyping) the response of the tumor cells to drug exposure. Following this exposure, measure both cell metabolism and cell morphology. The integrated effect of the drugs on the whole cell, resulting in a cellular response to the drug, measuring the interaction of the entire genome. The endpoints (point of termination) of genotyping analysis are gene express, examining a single process (pathway) within the cell or a relatively small number of processes (pathways) to test for "theoretical" candidates for targeted therapy. The endpoints of phenotyping analysis are expression of cell-death, both tumor cell death and tumor associated endothelial (capillary) cell death (tumor and vascular death), and examines not only for the presence of the molecular profile but also for their functionality, for their interaction with other genes, proteins and other processes occuring within the cell, and for their "actual" response to targeted therapy (not theoretical susceptibility). Again, the choice is theoretical vs actual analysis. |
Re: Cancer secret to success?! Finding your match!
Interesting comment at Amazon.com about the book by his long-time (ago) research partner:
I have known Robert Nagourney, the author of this book, both as a friend and colleague. I am not surprised to find that he has written a book that is both highly readable and which also carries much information of real value to cancer patients. My concerns with this book stem from glaring inaccuracies which, if left uncorrected, will unjustly damage the reputations of several clinicians and scientists who, to at least the same degree as Dr. Nagourney, have eschewed the easy path and instead have dedicated their careers to improving cancer care and extending lives by personalizing cancer treatments for individual patients. Apart from a pervasive theme throughout the book wherein Dr. Nagourney seems, both overtly and by inference, to credit himself with the work of others (this is wholly unnecessary, by the way, as Dr. Nagourney has indeed accomplished much of which he rightfully can be proud without the need for embellishment), is his characterization of all "cell proliferation" technologies - and particularly that which was offered by a company called Oncotech, as, basically, worthless. It should be noted that Dr. Nagourney and I were co-founders of Oncotech (no longer in business). The company originally was founded upon my technology, the DiSC assay, which is based upon the "cell death" endpoint. Dr. Nagourney still uses a re-branded modification of this (DiSC) assay in his own commercial laboratory. Dr. Nagourney's quarrel with Oncotech appears to lie not with my DiSC technology but instead in its use of a completely different technology, added later on. His strong language of condemnation implies that, using this "cell proliferation" technology, Oncotech basically provided a worthless service to more than 50,000 cancer patients. I will not burden the reader with specifics except to state that Dr. Nagourney's assertion, if not deliberate, bespeaks an incomplete understanding of the technology which he carelessly trashes - and, apparently, also of the considerable body of published literature which supports it. Unaccountably, Dr. Nagourney presents himself as a hero who courageously battles opposition within the company, in order to protect cancer patients from being victimized. In fact, I and others at Oncotech, aware that every laboratory test has both strengths and weakness, devoted ourselves to assuring that the tests were performed accurately and that physicians clearly understood what the tests could tell us and what they could not. Hundreds of physicians were long-time users of Oncotech's tests precisely because they found them to be useful in treating cancer patients, and many positive, independent, peer-reviewed studies published in esteemed medical journals attested to their predictive accuracy. There is just one more point (though many other exist) I'll mention here. It relates to Dr. Nagourney's representation of the "Medicare controversy." I would excuse Dr. Nagourney's taking a bit of self-serving liberty with the facts if, in seeking to inflate his own contribution, he did not attempt to undermine my reputation by misstating my position in the matter. Dr. Nagourney paints his opposition to Medicare reimbursement for these tests (something thousands of Medicare patients had wished for over the years) as being based on scientific and ethical principle. In point of fact, Dr. Nagourney was opposed for reasons of financial self-interest. He feared approval at a reimbursement rate to his lab at a level below what he already was charging Medicare patients as a non-covered service. He sought to prevent all cancer patients from receiving Medicare coverage for not only Oncotech's services but also for services provided by laboratories in competition with him which used the same cell death-based technologies used in his own laboratory. If he couldn't make a go of it at levels of reimbursement provided by Medicare, he sought (unsuccessfully, it turned out, contrary to the false impression given in his book) to prevent other laboratories from offering services which would be covered by Medicare, to the detriment of cancer patients who could benefit from these services, but couldn't afford to pay the full cost of these tests out of pocket, as in the case of his own clientele. In any case, the Medicare issue isn't a matter of debate. Verbatim transcripts from the relevant meetings clearly show that my role and my statements were not as Dr. Nagourney portrays them. I argued in favor of Medicare patients, with proven scientific facts - not in favor of Oncotech, of which I was no longer a part and which was, in fact, a competitor to my own personalized chemotherapy testing lab. I am in the process of preparing a point by point rebuttal of many other historical liberties which appear in Dr. Nagourney's book. These will be available on my website as soon as I am able to complete them (I am a medical oncologist with an active laboratory-based practice): [...] This could have been an excellent book. Much of what appears in it is, indeed, excellent. Sadly, egregious inaccuracies in some areas will force the reader to ask the question, "Which portions of this book can I believe and which portions can I not?" It didn't have to be this way. - Larry Weisenthal, MD [...] |
Re: Cancer secret to success?! Finding your match!
Thank you Andy for starting this thread and Jackie and GDP for your postings.
This is a lot of information, of which some I have to digest with a dictionary and google. Cell death end points seems very intriguing. None of us want to suffer through treatments that don't work for us. I am always pushing for more participation in clinical trials. The system appears to me that if approved in a trial the test or treatment becomes part of standard of care, it becomes available to all cancer patients. Why hasn't personalized cancer diagnosis and treatment made it's way into the clinical trial system? Is it because it is not patentable? and therefore no one has claim to its profits? |
Re: Cancer secret to success?! Finding your match!
In regards to Dr. Weisenthal's Amazon.com review of Dr. Nagourney's book, I've been involved in internet cancer research for 17 years and I've been following cell function analysis over 12 years. I've read and studied the history of it dating back decades.
While reading the book, when I came across the information about Oncotech and Medicare reimbursement, I knew Dr. Nagourney was wrong. I thought Dr. Weisenthal's comments were a very helpful review of the book. There were "others" that were running Oncotech at the time Drs. Nagourney & Weisenthal decided to leave the company. It was taken over by venture (vulture) capitalists, like a lot of private laboratories. There was one individual running the company that steered the EDR (extreme drug resistance) assay into dominance, the one that Dr. Nagourney is more critical of than Dr. Weisenthal is. When business people take over a medical laboratory, common sense and science is generally sacrificed. Like when "investigators" dominate over "discoverers" in cancer medicine. Dr. Nagourney is a practicing oncologist as well as a medical director of an assay lab. As a physician, he could not recommend his patients use his laboratory assay, it's against the Stark law - named after former Rep. Pete Stark - which restricts physicians on self referral patterns. Dr. Weisenthal is a medical director of an assay lab only. He always had fought for Medicare reimbursement of assays (any assays). After the Medicare meeting in Baltimore in 1999, CMS decided to reimburse for the drug "resistance" part of the testing (half the science is better than no science at all). It allowed at least one-third of the more accurate assay to be reimbursed for Medicare patients. They only had to pay for two-thirds (not 100%). In 2006, however, CMS decided to reimburse 100% for both resistance AND sensitivity testing. But when Palmetto, GBA took over for NHIC, they "arbitrarily" decided to drop reimbursing for the assay, period. They've been doing the same kind of stuff with not reimbursing for Avastin, or when it comes to Pet Scans, and so forth. So it's nothing new with them. In regards to the randomized clinical trial paradigm, there is a lot of caveats about it. http://cancerfocus.org/forum/showthread.php?t=3692 |
Re: Cancer secret to success?! Finding your match!
GDP,
I didn't realize you had a forum or I would have joined a long time ago. However, my physicians appreciate that I didn't know, ha, ha, ha. It seems that it is a sin at my treatment facility for a patient to read medical journals. Oh joy, all the information, and from PHDs, no less. My poor oncologist, thank heavens he only sees me annually. To be honest, I don't have much familiarity with many of the names, assays, concepts, etc that you discuss so easily. Such as who is CMA? or Palmetto, GBA? I am with you on the personalized treatment. I was under the impression in 2007 that nothing was available to test if a chemo would be effective. However, you say CMS decided to reimburse for sensitivity AND resistance testing in 2006. If I had know this testing was available I would have insisted on it. |
Re: Cancer secret to success?! Finding your match!
'lizbeth
I've been involved with internet cancer research for 17 years now. I don't know if anyone here remembers the CompuServe Cancer Forum when the internet was in its infancy. CompuServe users involved many professionals including medical oncologists who were fascinated with this new tool for sharing ideas. It was there that you made many contacts with leading oncologists from around the country and learned a great deal regarding new developments in the treatment of cancer. Six years ago, one of the main owners of the cancerfocus.org cancer information website asked me if I would be willing to moderate the site. He really like the contribution I was making on it. I consented. This is the only website that I have done this for. The main owner, Duncan Ross, has spent the last 8 years obtaining his Ph.D. in Immunology, with a few papers published in biochemistry. Now that he has officially received his Ph.D. and at his mentor's suggestion, he is focusing on fundraising for cancer research. His goal is to fund grant opportunities for academic labs conducting cancer research such as the ones at the University of Miami as well as further developing the cancerfocus.org website he began in 2006 to help direct cancer sufferers to clinical trials. He developed a foundation called the Kimera Society, which focuses on cancer and regenerative therapies for disease. Seventy-five percent of the funds raised go to academic institutions. It will also help him build a tumor library and continue producing the types of experiments (expensive ones) that ultimately make large strides in our understanding of cancer. In regards to CMA, Palmetto, GBA and Medicare reimbursement for assays (any assays). http://cancerfocus.org/forum/showthread.php?t=3139 http://cancerfocus.org/forum/showthread.php?t=3442 |
Re: Cancer secret to success?! Finding your match!
GDP,
Thank you for the ongoing education. Since I won't qualify for medicare for almost 2 more decades I'm sure the assays will be eligible for reimbursement by then! I'm still feeling sickened by the fact that these assays were available when I was first diagnosed. I'm sure I asked and researched for information on determining what chemos would be effective. I just didn't come across the information back then. I think my biggest resentment was being forced to take a toxic drugs such as a taxane when it might only be causing me harm and not killing my cancer cells. I am very happy to find out about these assays now, and if ever needed will be likely to use them in the future. |
Re: Cancer secret to success?! Finding your match!
'lizbeth
Like your thoughts about these assays being available when you were first diagnosed, they were available when my wife had her 24 year recurrence in 1996. Her thoracic surgical oncologist didn't know about them. She sure does now! I educated her on them. If she ever developed cancer, she would want to have her tumor cells assayed. And this is where I learned about Dr. William R. Grace in NYC. He had been using the assays for his clients since the early '90s. My wife and I would have traveled from southeastern Pennsylvania to NYC to be treated by him. Presented in 2011, in the first head-to-head clinical trial comparing gene expression patterns (molecular profiling) with personalized cancer cytometric testing (functional profiling or chemosensitivity testing), personalized cancer cytometrics was found to be substantially more accurate. It was hoped that something like this clinical study would be proposed at one of the semi-annual GOG meetings. Perhaps a good three-armed clinical trial: physician's choice vs molecular profiling vs functional profiling? It would shed a lot of important light on the relative value of cell culture vs targets, let alone "trial-and-error" physician's choice. http://www.cancerfocus.org/forum/showthread.php?t=3614 |
Re: Cancer secret to success?! Finding your match!
Accuracy and clinical utility of in vitro cytometric profiling to personalize chemotherapy: Preliminary findings of a systematic review and meta-analysis.
Christian Apfel, Kimberly Souza, Cyrill Hornuss, Larry Weisenthal, Robert Alan Nagourney; SageMedic, Inc, Larkspur, CA; Ludwig Maximilians University of Munich, Munich, Germany; Weisenthal Cancer Group, Huntington Beach, CA; Rational Therapeutics, Long Beach, CA http://abstracts2.asco.org/AbstView_132_118466.html We're so fortunate to have GD among us. His understanding, research expertise and personal experience with a wife who sadly succumbed to bc, make him especially qualified to advise us. The medical profession needs to get on board with this approach and make it more widely known! Clinical trials need to get moving on this! Without them, we're fighting a battle with blindfolds on, as I see it! |
Re: Cancer secret to success?! Finding your match!
Andi BB
My wife succumbed to the side effects of chemo-radiation (Taxol & WBR). While originally, she developed stage IV ovarian cancer in 1972, after 24 years, she developed a metastatic transdiaphragmatic tumor from the original ovarian cancer with attachment to the lung, liver and other midline structures of the chest. Parts of those structures were surgically resected. The thoracic surgical oncologist stated that she was 100% successful and did not feel that further treatment with chemotherapy was indicated. A number of thoracic surgeons over the years had told me that she was just trying to make my wife disease free. Although I've been involved with internet cancer research now for 17 years, I've studied cell function analysis for the last 12 years. It hold no boundaries across the various cancer types, breast, lung, ovarian, etc. Now you know why I made it my (rest of) life advocacy to find out what happened, why, and to help anyone else from this happening to them. Ever since I found what is called "dissemination after taxane-based chemotherapy" in 2001, I've realized this phenomenon. I've spent this time trying to find the evasive answers to puzzling questions. I thank you for your kind words. Greg |
Re: Cancer secret to success?! Finding your match!
Just wanted to thank you for your ongoing input to this support group. I was very touched to read about your wife's story and really surprised to hear about a recurrence 20 plus years after diagnosis. My friends daughter died of ovarian cancer age 24 years. She recurred two years after her initial diagnosis and I guess I always assumed this to be the type of pattern.
I am not sure if I have understood you correctly about the dissemination after taxable based chemo. Were you suggesting this was a factor for your wife? I would be interested to know more about this so will try a google search. Ellie |
Re: Cancer secret to success?! Finding your match!
Ellie F
Or you can read my paper on Taxol in this thread. A Patient Perspective on Brain Metastases in Breast Cancer. http://cancerfocus.org/forum/showthread.php?t=3892 Did your friend's daughter have the BRCA1, BRCA2 or Lynch Syndrome? Greg |
Re: Cancer secret to success?! Finding your match!
I do know a few people who have had their tumors tested at Rational Therapeutics. There is also another company doing something similar, and I think MD Anderson has used them.
Some oncologists will send samples there so as has been posted, you shouldn't need to actually go. But they want a fresh sample, I think. So if you have a recent biopsy, you might check into it. If SBRT doesn't work, I may look into it but in way, hearing that no chemo is going to work for me anymore would be devastating. I'd like to keep hoping! I'm sorry if I repeated stuff. This is nobody problem but mine but I find that when posts are written in a bunch of colors they hurt my eyes and I can't read them. I'm sorry. |
Re: Cancer secret to success?! Finding your match!
Hi GD
My friends daughter didn't have any of the things you asked about. Her elder sister has yearly ultrasound examination of her ovaries and so far seems to be ok. I believe however she will 'persuade' the gynaecologist to remove them anyway after she has had her children. Thank for the link to the article. Ellie |
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