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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 |
Re: Cancer secret to success?! Finding your match!
Just wanted to bump this up. I truly believe it is so important. And little known.
When I had by abdominal biopsy laparoscopic surgery recently, I said to the surgeon, I THINK THERE'S LESS THAN 1% CHANCE I HAVE CANCER -- BUT SINCE YOU'RE GOING IN THERE, JUST IN CASE, COULD YOU TAKE SOME TISSUE FOR ME TO GIVE TO A LAB.......... He waved his hand, I am not taking any extra tissue out! I wasn't happy. But -- I truly did not believe I had cancer, so it was sort of a non-issue. The surgeon did say he liked my positive attitude. Amazed he noticed it, as he was always in such a hurry to get to his next patient, and the one after that, so he could go do surgery! I hope never to have to see him again. I think he did a good job. AND I GOT EXCELLENT RESULTS! BENIGN. NO EVIDENCE OF DISEASE... Ellie, I still go for a transvaginal pelvic sonogram every year. I want them to tell me I am boring, and my ovaries are beautiful. Couldn't get a better compliment!!! ANDI |
Re: Cancer secret to success?! Finding your match!
I didn't read all the previous posts, so I'm sorry if I am repetitive. I read the requirements for sending your tumor type off to get tested and they need about a gram of viable, fresh tumor AND you need to be off chemo/radiation for 2-4 weeks prior to harvest of the tissue. Yikes, It sounds so perfect, I just wish they could do it with less tissue, a needle biopsy won't cut it, and I can't give them a chunk of my bone mets to test. :( Hopefully they will learn how to perform similar analyses soon using mRNA assasys and will require tiny amounts of tumor.
Kristin |
That's a very good question to bring up on this subject Kristin! There are very good reasons for having a minimum of viable tumor specimen. Doing anything less than that will not have the "accuracy" this type of phenotype analysis has. It has to do with the microenvironment contributing critically to drug response.
By examining drug-induced cell death events in native-state 3D (three dimensional) microclusters, the functional cytometric profiling platform has the unique capacity to capture stromal, cytokines (chemokines), macrophages, lymphocytes, vascular and inflammatory cell interactions with tumor cells, known to be crucial for clinical response prediction. The microclusters recapitulate the human tumor environment, while the "3D" advancement recreates the extracellular matrix (metalloproteinases). The platform studies cancer response to drugs within this microenvironment, enabling it to provide clinically relevant predictions to cancer patients. It is this capacity to study human tumor microenvironments that distinguishes it from other platforms in the field. What about the fibroblast matrix, the lymphatic vessels, the infiltrating monocytes, the T-cells, the B-cells and neutrophils: the vast complexities of the human tumor microenvironment? Real-life cancers grow as a complex organism that includes both malignant and non-malignant components. It may include fibrous tissue, mesothelial cells, fibroblasts, endothelial cells, etc. In order to exhibit its most characteristic behavior patterns, a cancer cell needs to be surrounded by a colony of other cells, both normal and malignant. Tumors are very complex organisms. Ignoring this complexity, most studies of human cancer in culture have focused upon individual tumor cells that have been removed from their complex microenvironment. Some previous methods of assays limited their analysis only to isolated tumor cells and failed to incorporate the crucial contribution of non-tumorous elements to the cancer phenomenon. Each of these microspheres contains all the complex elements of tumor biosystems that are found in the human body and which can impact clinical response. Doing anything less is doing it on the cheap! And that doesn't help the cancer patient. |
Re: Cancer secret to success?! Finding your match!
I can sense you have a great deal of background on this subject, are you a researcher yourself? Myself, I have a Doctorate in Immunology, so I completely agree with you on a research level, but from a BC patient perspective, I believe more options are needed because not all cancers are solid, and are able to be sampled in this fashion. It sounds like the dream clinical trial, but it would need to be done on breast tissue from early stage patients (I-III), as there would be too many variables in other organ metastases. As a former researcher, I think this is a awesome idea, and I have participated in some projects looking at the tumor micro environment and it is an area that needs more attention as it is so complex.
I would just like to see some microarray trials soon to see if on a mRNA level, we can learn about drug sensitivity that way too. Cheap to the researcher and cheap to the patient are two different things. For me personally, I can not donate a whole gram of my pelvis while alive, but would gladly donate my primary tumor of the breast except it is in paraffin and not viable. Hopefully they are able to collect enough specimens to fulfill this study, as the results could benefit all cancer patients like you said. Kristin |
Ironically, one of the contributors to and the owner of cancerfocus is a Doctorate in Immunology. He found me over six years ago and wanted me as the moderator. I've been involved with internet cancer research for seventeen years and have studied cell function analysis over the last twelve years. Of course cell function analysis holds no boundaries across the various cancer types and helps in being a moderator of a cancer information website that deals with all the various types. It's been some of the best learning experience in my life, other than studying Laver Curves in the '70s.
As you know, microarrays examine what genes are expressed in cancer cells. It is mainly used for screening/gene discovery work. You screen thousands of genes to discover an association and then you focus in on only a few hundred or so for more careful study by some other method like RT-PCR (real time polymerase chain reaction). But all the gene mutation or amplification studies can tell us is whether or not the cells are potentially susceptible to this mechanism of attack. It doesn't tell you if one drug is better or worse than some other drug which may target this. It is whether the capacity to judge phenotypes will be easily achieved at the genotype level. Genotype analysis measures gene expression by microarray. The microarray test looks for genes in the tumor that are associated with treatment options. It is tumor analysis coupled with clinical literature search, which tries to match therapies to patient-specific biomarker information to generate a treatment approach. They never actually test the tumor specimen against any drug agents. So based on this analysis, they identify "potential" therapies for patients and their treating physicians to discuss. Phenotype analysis takes the tumor with the surrounding tissue (intact and live) and then puts drug agents on it to see which actually kill the cancer cells. It measures biological signals rather than DNA indicators. It "actually" measures the response of the tumor cells to drug exposure, the integrated effect of the drugs on the whole cell, measuring the interaction of the entire genome. No matter which genes are being affected, phenotype analysis is measuring them through the surrogate of measuring if the cell is alive or dead. The former is testing for mutations, while the latter is testing for drugs. System's biology suggests that the simple knowledge of a gene's presence or absence does not confer a biological behavior. Biology is not linear. The idea of simply finding a mutation and then picking an appropriately targeted drug seems like a nice idea. However, not every key that looks like it will fit a lock will actually turn it. There are numerous common mutations in various tumor types, but they don't know that all those mutations are going to turn out to be relevant, as many of them are essentially bystanders. Why don't all the mutation positive patients respond and why do some mutation negative patients respond? Cancer biology is complex. Molecular biologists can only seek and identify that which they know a priori. There are numerous mutations, insertions and deletions. A gene mutation, deletion, translocation or amplification could disrupt many cell functions, leading to drug resistance, or could inactivate or damage the doors through which a drug enters a cell. Cancer arises not only from gene mutations but also from small fragments of RNA that can up- or down-regulate normal genes in abnormal ways. The fact that normal genes can function abnormally under the control of these small RNA sequences is just one more example of the genotype-phenotype dichotomy that cannot be adequately examined on static contemporary genomic platforms. BTW. Speaking of clinical trials, you know the "gold standard" for all diagnostic tests are clinical correlations. However, some private laboratory oncologists are working (again) on randomized clinical trials, but this time a good three-armed clinical trial: physicians' choice (or typically called trial-and-error) vs molecular profiling vs functional profiling. Back 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 (Arienti et al. Journal of Translational Medicine 2011, 9:94). It is hoped that something like the Arienti, et al study would be proposed at one of the GOG meetings. It was and was accepted. The process of funding has been ongoing. Personally, after twenty years, I would like to see this "battle-of-the-bands" three-armed trial. Let's put it all out there and see what's best! |
Re: Cancer secret to success?! Finding your match!
GDP, you are preaching to the choir. I did not mean to start a debate, I agree with all you have pointed out. I just selfishly want microarrays to hit the consumer as I cannot donate a large chunk of my pelvis, as I have bone only mets, and my primary tumor is long gone. What is your advice there? What specimen could I send without drastically weakening my bones and negatively affecting my quality of life. I know there are rumors that surgery can aid metastasis if the cancer has been sequestered and controlled by our natural defenses. Hello immune cells. It mixes the pot, so to speak, causing inflammation.
It would be really great for this study to get some national recognition before patients/physicians decide to toss tumor samples. I am guessing (and correct me if I'm wrong) that when looking for clear margins they actually waste much of the specimen as they cut through the tumor to get to the borders. Furthermore lymph nodes which provide many immune cells and mobilized cancer cells could provide lots of information, but they are flash frozen during surgery to determine if they are + or - for cancer. Much to the benefit of the patient on the exam table, of course. Thanks for taking the time to type up all this information, your doing your wife a good justice. Kristin |
Re: Cancer secret to success?! Finding your match!
http://www.vanguardcancerfoundation.org/
The foundation that is raising money to further functional profiling. An important step toward personalized medicine. I just read one of the new posts that talks about 20,000 potential targets in genetic profiling. http://her2support.org/vbulletin/showthread.php?t=58649 Maybe it is time to narrow it down with a study on functional profiling and help to funnel research money into treatments that will benefit patients years sooner. If anyone has connections, this might be a big help to us. Anyone good at manifesting $? |
World renowned Oncologists are challenging the cancer industry to recognize a Chemo-Screening test (CSRA) that takes the "guesswork" out of drug selection. One of the reasons medical oncologists don’t like in vitro chemosensitivity tests is that it may be in direct competition with the randomized controlled clinical trial paradigm. http://vimeo.com/72389724
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Re: Cancer secret to success?! Finding your match!
Once again, thank you GD...!
Yet the medical profession, steeped in establishment thinking, conservative/mainstream thinking and bureaucracy is ready to leave us to fight the pharmaceuticals and the insurance companies and we stab our way to survival. We need docs with vision, with open minds, with the ability to change decades old ways of seeing cancer and start using $$ from research toward real success. Isn't it time to take the guesswork out of the equation -- when it is YOU, AND ME AND OUR SISTERS on the line??
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Re: Cancer secret to success?! Finding your match!
Yes Andrea! Why didn't I learn about them until after Ann's death? They were available back in 1996. In fact, I educated Ann's thoracic surgical oncologist about them and she would want to have them done if she ever developed cancer. She didn't know about them either in 1996. Heck! My PCP use to hang around with Dr. William R. Grace's (whose been using them in his private practice for over 20 years) younger sister when they were children, and and he didn't even know about them, or he would have had them done for us. Why my 17 year advocacy!
It's a shame Drs. Burstein and Ajani have no knowledge of the CSRA's like most medical oncologists don't. The oncologists who don't believe in assay testing most likely are ones who only have knowledge (if any knowledge at all) of the old technology that uses cell-growth endpoints, a technology that hasn't been used in private labs for over twenty years, who use cell-death endpoints. Good review papers exist on cell culture assays and are increasingly appreciated, understood and applied by the private sector and European clinicians and scientists (as well as elsewhere). 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 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. Why Oncologists Don’t Like In Vitro Chemosensitivity Tests? http://her2support.org/vbulletin/showthread.php?t=59243 |
Re: Cancer secret to success?! Finding your match!
GD...thank you so much for being so passionate and for having the brain that you do. I feel a bit better knowing you exist. God forbid this thing comes back, but if it does, you have armed me with knowledge that could potentially save my life. For that, I am ever so thankful.
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Re: Cancer secret to success?! Finding your match!
Another study has shown better result of CSA. As the study concludes, “CSA guided chemotherapy should be compared to empiric treatment by a prospective randomized trial.”
Pol Przegl Chir. 2013 Jun 1;85(6):340-7. doi: 10.2478/pjs-2013-0051. In Vitro Chemo-Sensitivity Assay Guided Chemotherapy is Associated with Prolonged Overall Survival in Cancer Patients. Udelnow A, Schönfelder M, Würl P, Halloul Z, Meyer F, Lippert H, Mroczkowski P. Abstract The aim of the study. The overall survival (OS) of patients suffering From various tumour entities was correlated with the results of in vitro-chemosensitivity assay (CSA) of the in vivo applied drugs. Material and methods. Tumour specimen (n=611) were dissected in 514 patients and incubated for primary tumour cell culture. The histocytological regression assay was performed 5 days after adding chemotherapeutic substances to the cell cultures. n=329 patients undergoing chemotherapy were included in the in vitro/in vivo associations. OS was assessed and in vitro response groups compared using survival analysis. Furthermore Cox-regression analysis was performed on OS including CSA, age, TNM classification and treatment course. Results. The growth rate of the primary was 73-96% depending on tumour entity. The in-vitro response rate varied with histology and drugs (e.g. 8-18% for methotrexate and 33-83% for epirubicine). OS was significantly prolonged for patients treated with in vitro effective drugs compared to empiric therapy (log-rank-test, p=0.0435). Cox-regression revealed that application of in vitro effective drugs, residual tumour and postoperative radiotherapy determined the death risk independently. Conclusions. When patients were treated with drugs effective in our CSA, OS was significantly prolonged compared to empiric therapy. CSA guided chemotherapy should be compared to empiric treatment by a prospective randomized trial. |
Re: Cancer secret to success?! Finding your match!
"CSA guided chemotherapy should be compared to empiric treatment by a prospective randomized trial."
How many times have we heard that before? The same people who maintain that assay-directed therapy should not be used until proven in prospective randomized clinical trials, are the same people whose entire careers are utterly dependent upon mega-trials 100% funded by pharmaceutical companies (that, plus fees from speeches they give for these companies), are the same people who control the clinical trials system, the grant review study sections, and the journal editorial boards. That, and trying to invent brand new criteria for validating a laboratory test. Tens of thousands of scientists pushing a goal of finding the tiniest improvement in treatment and fostering redundant problems and rewarding academic achievement and publication above all else. Even in this age of molecular gene testing and targeted treatments, a first of its kind head-to-head clinical trial comparing gene expression patterns with personalized cancer cytometric testing (also known as functional tumor cell profiling or chemosensitivity testing), personalized cancer cytometrics was found to be substantially more accurate than molecular gene testing (Arienti et al. Peritoneal carcinomatosis from ovarian cancer: chemosensitivity test and tissue markers as predictors of response to chemotherapy. Journal of Translational Medicine 2011, 9:94). http://cancerfocus.org/forum/showthread.php?t=3490 But lets go back to the real standard of validation when it comes to diagnostic tests in cancer medicine: The "Holy Grail" is clinical correlations. The standards used to judge the utility of "all" laboratory and radiographic tests have always been (1) acceptable "accuracy" of clinical correlations and (2) clinical utility, in the judgement of the physician ordering the test. The preponderance of available evidence (correlation between test results and clinical outcomes) certainly indicates that chemoresponse assays are usefully accurate in taking a long list of drugs with average probabilities of providing clinical benefit and sorting them into drugs with above-average and below-average probabilities of benefit. This kind of testing may have utility at the time of initial therapy, in instances of severe drug hypersensitivity, failed therapy, recurrent disease and metastatic disease, by providing assistance in selecting optimal chemotherapy regimens. And let's go to this brand new criteria invented to validate these laboratory tests. It was hoped that something like the Arienti, et al study (above) would be proposed at one of the semi-annual GOG meetings. Perhaps a good three-armed clinical trial: physicians' choice (empiric treatment) vs molecular profiling vs functional profiling? This issue has been an ongoing saga for some 20 years now. The question that should be addressed is across the board assessment of the relative accuracy of different endpoints. They should answer all the questions at once, not one followed by another. A "battle-of-the-bands" so to speak. Well, it was proposed, and it was approved, and is in the process of funding. Notwithstanding any help from NIH (and with sequestration upon us), searches for private funding are being pursued. In the meantime, until the controlled, randomized trialist approach has delivered curative results with a high success rate, the choice of physicians and patients to integrate promising insights and methods like these chemoresponse assays, remains an essential component of this kind of treatment technology. Patients can't wait! |
Re: Cancer secret to success?! Finding your match!
If you haven't already -- please check out this propellor head discussion on finding the right chemo match for your particular cancer. Test it in a lab, not on you (needlessly)...
Tumor Profiling Lab Tests - HER2 Support Group Forums Lots of good info here... And there... Stuff your doc won't tell you... Yes, it's not for prime time, but frankly when Herceptin was fast-tracked out of clinical trials, cause women were being given 3 mnths to live and this was a viable possibility -- Herceptin was in its infancy too! And -- it's saved many lives!!!!!!!!!!!!! I am one! Thank you Dennis Slamon. And the newer versions of Herceptin might work for those for whom Herceptin did not match their tumor's characteristics! I was in uncharted waters and there were no studies to ask, How long do you stay on this? Or answer many of my questions. I moved ahead with faith and certainty anyway. |
Re: Cancer secret to success?! Finding your match!
Quote:
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Re: Cancer secret to success?! Finding your match!
'lizbeth
The so-called "battle-of-the-bands" clinical trial that was proposed and approved by GOG is a phase III trial. Study Title: A randomized study of outcomes between ovarian cancer patients receiving empirically-selected chemotherapy versus chemotherapy personalized on the basis of in vitro genomic profiles versus macrocell drug susceptibility profiles (functional cytometric profiling). Study Aim: Compare patient outcomes in response to treatment with chemotherapy regimens selected: 1. empirically (physician's choice, based upon best clinical judgment) versus: 2. identified via molecular (genomic) profiling (molecular best in vitro regimen) versus: 3. identified via cell culture whole cell profiling (cell culture best in vitro regimen). Again, notwithstanding any help from NIH and with sequestration upon us, searches for private funding are being pursued. |
Re: Cancer secret to success?! Finding your match!
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Re: Cancer secret to success?! Finding your match!
Yes! The Gynecologic Oncology Group. I just want to point out that some private laboratory oncologists have been trying to have this clinical trial for over 20 years now. This hasn't been something new to them. What was recently new was the support by one of the members of the GOG group to have this clinical trial. That is one of the main reasons it was proposed in ovarian cancer. A clinician involved with ovarian cancer and the GOG group suggested that some private laboratory oncologists put forth a proposal. They did!
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Re: Cancer secret to success?! Finding your match!
I seem to recall seeing some labs that do this in the New York area.
At a glance, I am not seeing that. If I missed it, and YOU see, please inform me. If you know such labs in the New York area, please SHARE... |
Re: Cancer secret to success?! Finding your match!
'lizbeth
For some reason, I didn't get back to you on the Phase II results. It wasn't a "battle of the bands" Physician's Choice vs Molecular Profiling vs Functional Profiling, but it was Molecular Profiling vs Functional Profiling. http://cancerfocus.org/forum/showthread.php?t=3955 As was the case for the last 20 years, lack of funding hampers the success of having a Phase 3 Cell Culture Assay Clinical Trail: physician's choice vs molecular assay-directed vs cell culture assay-directed. GOG is willing to consider the proposal for the trial ONLY if there is guaranteed funding in advance, which in this case would be $11 million. There is no possibility of getting this from investors or from peer review grant funding organizations (NIH, ACS). The only source is philanthropy. Anybody know a philanthropist willing to help out? Andrea I don't recall any labs doing functional cytometric profiling in the New York area. Although there are doctors in the New York area that avail themselves to laboratories in southern California. Once such private practice medical oncologist I know (and would have certainly traveled to NYC to have my wife treated by him if I had known) is William R. Grace. http://weisenthalcancer.com/Home.html |
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