Non-Mainstream Therapies: Are You Curious? Skeptical? Grateful?
Comments
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I see no one has commented on the link that lightandwind posted re the vast amount of inaccurate studies that have to be reversed, and why peer reviewed studies are suspect. That was very disturbing to me. Anybody have any thoughts on that?
It reminds me of the ever changing admonishments of what foods are "bad" for you. For many years, it was, don't eat butter, or eggs, or fat. Now they find that all these things are good for you. So how in God's name are you to know what to believe, if the "facts" are always changing?
I also understand why lightandwind and other alt proponents are so skeptical of mainstream medicine. After watching the first episode of "Emperor of all Maladies" I realize that we are all guinea pigs when it comes to medical treatments. It was heartbreaking to see all the children who died of childhood leukemia, and how they suffered through multiple treatments that ultimately didn't work, treatments that actually killed them before the leukemia did. Until they found a protocol that now cures nearly 90% of patients. Yes, CURES. While watching this, I felt strongly that until the right combination of drugs was found, these kids were essentially experiments. And that the doctors and parents put the children though horrific long term suffering. Also, even though the survival rate is now so high, there is still a caveat somewhere that "survival rates for infants did not increase with improvements in drug use...because more infants died from side effects of their treatment."
So yes, I understand the thinking that "the cure (chemo) will kill you". Sometimes it does. My MO always says she has to balance toxicity with efficacy, especially in Stage IV patients.
Nevertheless, I still have to trust in traditional medical treatment, because that's all we have at this moment in time that has been proven to work, for some of us at least. It is the standard of care, notwithstanding that it is far from perfect, even if only 30% of persons survive, because it is all we have. Because 30% is better than 0% . And yes, we suffer and can die from the toxicity of the treatments, some of us regress and die anyway after treatment...because basically we are now the living experiments for a potential cure down the road. I guess we all have to decide how much we personally are willing to put up with, is it worth it?
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Hi I've been following this thread out of interest and wanted to comment on your post Deb.
I've been watching the PBS special as well and was also struck by how chemo came into use and how horrifying it was in the early days of figuring out how to use it. The little boy that passed away in the episode did have a reoccurance due to the chemo drugs he was using and one of the doctors acknowledged this.
It makes me sad to think of how much suffering this disease has caused and still does. I am left feeling unsure of a lot of things about my disease, uneasy about how much the chemo helped or didn't help. I'm interested in non-mainstream therapies, but decided on conventional as they have a proven track record. However, it wasn't that long ago that BC was being treated with high doses of chemo and bone marrow transplants. It just makes me wonder how much the medical community really knows about all of this.
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Deb, the case that Light posted about is one I read about elsewhere. Obviously it is concerning and bad news all around. It does not, however, discredit the piles of studies and stats that show the efficacy of, for example, chemo.
I read the Emperor of All Maladies and found it unusually well written. The account of how leukemia treatment was developed and what it entails, even now that it has been successfully refined, is harrowing. It is a nasty disease and a seriously nasty treatment. However, the reason the doctors were able to try the treatments for childhood leukemia the way they did was that there was no alternative except a swift and unpleasant death. Since then, trials for new regimens or drugs have been regularized, which has led to other problems like slow trials and approvals for new drugs.
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Remember that the bone marrow transplants for BC that were being done a couple of decades ago were insisted upon mostly by women with BC. "Emperor" contains a scathing expose of the physician who faked results.
So we need to keep in mind that activism can have its downsides, too.
On a different tack: Rather than take probiotics, why not just a small glass of kefir (maybe 5-6 oz.) every day? You get some protein, too. And, yum.
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I love all of your well thought out comments. It serves to highlight what a tough and complicated nut this whole cancer thing is. Yes, learning about chemo experimentation on leukemia patients was heartbreaking, but their outcomes without it would have been just as awful without it and their legacy is the incredible cure rate for leukemia today. However, I am also grateful that the whole process for trialing drugs and tx is very different today.
Even with the differences in the trialing process, there is going to be a point when we move to human trials. When this happens there will, sadly, be some unforeseen outcomes. Again, I am grateful and honor those who took brave steps into the unknown sothat what they have done may benefit others.
Whollyhealing,
Welcome. Radical self care is a new term for me. I am glad you're doing well. Most of what you're doing holds no appeal for me, personally, as I can't find enough research to support things like coffee enemas, but I'm glad you've found what works for you
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Selena, for me, when diet and exercise became alternative, or maybe I should say complementary, or maybe supplementary, was when I was diagnosed. Before, I engaged in these enterprises in generalized hopes of avoiding disease and decrepitude. Now that I've had cancer, these same actions have acquired the anti-cancer job description and my focus has sharpened in quite significant fashion.
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such an active thread! I want to respond to a number of you individually, let's see how well I do...
Winning -- fantastic! May your NED days continue forever!
Ruthbru -- I saw that same article this morning about the medieval remedy for MRSA. I have been humming "Greensleeves" all day. ;-)
Momine -- you might enjoy adding sauerkraut to your diet for more probiotic benefits. Apparently it's very easy to make from scratch. I've been buying Trader Joe's raw sauerkraut -- I love it as a cold side dish accompanying meat.
Selena -- I think it was you who was curious that diet and exercise are considered "alternative" ? Well, my response to this is that the Standard American diet is inherently unhealthy, so cleaning up one's diet is definitely "alternative"! ;-)
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Gemini4, my daughter made sauerkraut the other day and it was very easy, as you say. I have never liked pickles though, as in I throw out a sandwich, if I find pickles in it. So it was hard for me to eat the sauerkraut, but I am working on it. Same problem with kefir, can't bring myself to drink it.
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I love sauerkraut perogies done in EVOO with diced sweet onion Yum Yum
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O.M.G. cp418!!! You made me drool. Sauerkraut perogies slathered in butter, carmelized onions, bacon rondons, and lashings of sour cream. MMMMmmmmm. Heart-attack-on-a-plate. I love them but have managed to abstained from them for most of my adult life.
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cp418 and Selena, I will be right over! Should I bring some beer?
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Hmmm, I do love perogies, so maybe that would work.
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How about some Flying Monkeys Amber Ale?
(Another thing I think about living holistically is that you should be good most of the time, but you should also really celebrate life with the things you love too).
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Like... the odd glass of perfectly chilled gerwurtztraminer is good for the soul? Agree!
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I'm on board with the raw sauerkraut. Love to eat it, nearly every day.
"A study published in 2012 in the journal Nutrition Cancer showed that consumption of cabbage and sauerkraut is connected with significant reduction of breast cancer incidences. Estrogens are considered a major breast cancer risk factor and their metabolism by P450 enzymes substantially contributes to carcinogenic activity.The aim of this study was to investigate the effect of cabbage and sauerkraut juices on key enzymes involved with estrogen metabolism in laboratory cell tissue. The 2012 study conducted by Hanna Szaefer, Et Al. showed that their research "supported the epidemiological observations and partly explain the mechanism of the chemopreventive activity of white cabbage products." In other words their research supported the observation that the consumption of sauerkraut was a beneficial food for the prevention of breast cancer in women."
http://healthimpactnews.com/2014/sauerkraut-anti-c...
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Yes - Nutrition is critical to health and can reverse some illnesses. Simple diet changes for many can alter their metabolism to use different pathways. I'll try to lookup some notes I had from sessions with Nutritionist presentations. Very informative - only at times I felt like I was consuming so many supplements. But then in my case - they were recommended specific for some of my issues, high cholesterol, neuropathy post chemo, osteopenia, etc.
Regarding the perogies - I eat with a scoop of organic low-fat sour cream and serving of apple sauce. They are homemade from a family owned business purchased local. I'd never be able to make myself! They are my favorite - although other stuffings too.
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Kay: sorry I missed your comment or did not read deeply enough, post chemo ADD !!
Tangandchris: I feel the same way, that in 20 or 30 years, will they discover that our current treatments were not doing what they intended? Maybe, when you look at history and see what they have tried in the past...like massive doses of chemo that literally brought patients "to the brink of death". After the ten year trial showed that it had no better effect than lower doses, they scrapped that treatment. But ten years of women going through that....as Caryn says, the women who do the trials are heroes, and where would we be without human trials?
Kay, Momine, Selena and others, thanks for clarifying that the trial process is a lot more rigorous, which is why it now takes so long for drugs to be approved for use. Like Herceptin .......women were clamoring for it which is what finally pushed them to trial, and am I personally ever thankful for that!
Outside of trials, I wonder if our doctors are collecting data on their patients for a kind of worldwide data base, and if not, why not. Although my MO was always minimizing my side effects, always telling me it wasn't a se.....so maybe that wouldn't be controlled enough to be valid.
Sorry if I went way off topic. Just things I've been thinking about.
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kayb... WOW!!! I haven't time to read it in full now, but I have copied it to go over in detail later, but sounds fascinating. I hope that Canada has something like that in the works. I know that my cancer centre does this, but I have no idea if they are linked to other cancer centres or not. I'll have to ask at my annual MO visit next month.
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Deblc, I have been wondering about the docs collecting data as well. Quite a few studies are based on the records of a specific hospital, clinic or doc, but I would like to see something more organized about this. I would also love to mill the data collected by my own doc from his patients. He only treats BC and has done so his entire career. His files must be a goldmine.
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Stand Up To Cancer is trying to do this, Momine. I am posting their mission statement below. If you'd like to know more you can check out their website. (I learned about them when I was researching how 'cancer' organizations spend the money donated to them......they are good, I can post that information also if anyone is interested.)
Mission Statement
Stand Up To Cancer’s (SU2C) mission is to raise funds to accelerate the pace of groundbreaking translational research that can get new therapies to patients quickly and save lives now.
SU2C brings together the best and the brightest researchers and mandates collaboration among the cancer community. By galvanizing the entertainment industry, SU2C has set out to generate awareness, educate the public on cancer prevention and help more people diagnosed with cancer become long-term survivors.Here we stand, on the verge of unlocking the answers that will finally conquer cancer.
Cancer takes one person every minute. One life in a moment. They are our brothers, our sisters, our fathers and mothers, our husbands and wives, our best friends, our children, ourselves. Every day in America 1500 people die despite the fact that the means to save them are literally within our reach. To wait any longer for someone else to save our lives and the lives of those we love is unforgivable. We must act now.
For the first time in history, we can envision the possibility of stopping cancer in its tracks. Now more than ever, as government funding for cancer research is disappearing from the national agenda, every single one of us affected by cancer must stand up and be heard.
How?
Working with the top experts in cancer research, Stand Up To Cancer is forging a new way to develop breakthroughs that will end cancer. We’re putting together the best and the brightest minds in cancer research, investing in their projects and taking the bureaucratic obstacles out of their way. SU2C’s interdisciplinary Dream Teams of scientists, clinicians, technicians and other experts, are hard at work on solutions to the unique problems that cancer presents. Learn More.
SU2C’s funding is administered by the American Association for Cancer Research, the largest scientific organization in the world focusing on every aspect of high-quality, innovative cancer research. Together with Stand Up To Cancer’s “Blue Ribbon” Scientific Advisory Council, comprised of world-class scientists across several disciplines and patient advocates, the most promising projects are identified, mentored, and funded.
Why Now?
We now understand the very biology that drives cancer. With knowledge gained from the mapping of the human genome, we can target the genes and pathways that are involved in turning normal cells into cancerous ones. We are on the brink of possessing a toolbox full of new, advanced therapies just waiting to be adapted to benefit patients. Right before us, so close we can almost touch them, are scientific breakthroughs in the prevention, detection, treatment - and even reversal - of this disease.
This is where the end of cancer begins: when we unite in one movement, unstoppable.
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Ruth, that old wives tale is completely fascinating!! Thanks for sharing!And I would like to hear about STand up to Cancer. It would be good to know a GOOD organization to send donations to. Thank you.
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glennie,
Checkout Stand Up 2 Cancer's website.
http://www.standup2cancer.org/why_were_different
Thus far, I have been more impressed by their efforts than with many other organizations. There is an owner of a major league sports team who is a big supporter of theirs. His daughter is an acquaintance of mine as well as my SIL and younger , and a bc survivor herself. I hope this doesn't prejudice me, but I feel this a worthy organization.
Caryn
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Thanks, Caryn,, I'll check them out. -
No idea whether my hospital (Dartmouth) is one of the six you mention, Kayb, but I found this (and more) on their research site, "Genetic sequencing is routinely applied to most patients with metastatic colon cancer, glioma, and melanoma, as well as to some patients with metastatic breast cancer." The article was dated January, 2014, so hopefully they have been moving forward in double time. Until just now, I had no idea this was possible, so thank you so much for the info.
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A couple years ago some of us on BCO were researching the various groups and how much of the money donated either went to research of directly to patients themselves, and how much was spent on salaries, administrative fees etc, etc. I looked into Stand Up To Cancer.....I found my report and am going to copy it below. It's from October 2013 so some of the information will be old, but you will get a good idea of what they are doing:
StandUp2Cancer is one of the charities funded by the Entertainment Industry Foundation. First is the breakdown of the entire foundation from Charity Navigator, and second I have addressed StandUp2Cancer itself (also through Charity Navigator):
Mission: Created in 1942, the Entertainment Industry Foundation (EIF) was established on the belief that the entertainment industry was in a unique position to truly help others. EIF harnesses the collective power of the entertainment industry and channels its unique assets to raise awareness and funds for critical health, educational and social issues in order to make a positive impact in our community and throughout the nation. Annually, the Entertainment Industry Foundation funds more than 300 charitable organizations within the greater Los Angeles area and throughout the nation.
Score (out of 70) Rating
Overall 61.34
Financial 57.76
Accountability & Transparency 70.00
Financial Performance Metrics
Program Expenses (Percent of the charity’s budget spent on the programs and services it exists to deliver) 77.6%
Administrative Expenses 9.7%
Fundraising Expenses 12.5%
Fundraising Efficiency $0.18
Primary Revenue Growth 13.2%
Program Expenses Growth 27.7%
Working Capital Ratio (years) 0.54
Accountability & Transparency Performance Metrics Information Provided on the Form 990 (my note: all these areas are checked 'yes' in the critique) Independent Voting Board Members, No Material diversion of assets, Audited financials prepared by independent accountant, Does Not Provide Loan(s) to or Receive Loan(s) From related parties, Documents Board Meeting Minutes, Provided copy of Form 990 to organization's governing body in advance of filing, Conflict of Interest Policy, Whistleblower Policy, Records Retention and Destruction Policy, CEO listed with salary, Process for determining CEO compensation, Board Listed / Board Members Not Compensated
Is the following information easily accessible on the charity's website? (my note: all these areas are checked 'yes' in the critque) Donor Privacy Policy, Board Members Listed, Audited Financials Form 990, Key staff listed
Contributions
Contributions, Gifts & Grants$36,788,081
Federated Campaigns$0
Membership Dues$0
Fundraising Events$4,457,791
Related Organizations$0
Government Grants$0
Total Contributions$41,245,872
Program Service Revenue$0
Total Primary Revenue$41,245,872
Other Revenue$158,865
TOTAL REVENUE$41,404,737
EXPENSES
Program Expenses$46,468,144
Administrative Expenses$5,850,145
Fundraising Expenses$7,534,816
TOTAL FUNCTIONAL EXPENSES$59,853,105
Payments to Affiliates$0
Excess (or Deficit) for the year $-18,448,368
Net Assets$32,603,989
Compensation of Leaders:
Compensation $414,855 0.69% of Expenses
Paid to Lisa PaulsenPresident, CEO
http://www.standup2cancer.org/mission_statement
Stand Up To Cancer (SU2C) is a groundbreaking initiative created to accelerate innovative cancer research that will get new therapies to patients quickly and save lives now. SU2C is bringing together the best and the brightest researchers and encouraging collaboration instead of competition among the entire cancer community. By galvanizing the entertainment industry, SU2C creates awareness and builds broad public support for this effort. SU2C’s unique funding model, developed with the help of prominent cancer researchers, encourages collaboration and innovation through two new types of scientific grant. Dream Team grants are awarded to multi-institutional groups of scientists who work collaboratively, rather than competitively, to develop new treatments quickly in order to save lives now. Innovative Research Grants support groundbreaking cancer research projects that are high-risk but could also be high-impact, and have the potential to significantly affect patient care. 1. Does any money from this purchase go to support breast cancer programs? and 2. What organization will get the money? What will they do with the funds, and how do these programs turn the tide of the breast cancer epidemic? Here is the project one of the Dream Teams is working on: An Integrated Approach to Targeting Breast Cancer Molecular Subtypes and Their Resistance Phenotypes Funding: $16.5 million Leader: Joe W. Gray, Ph.D., professor and chair, biomedical engineering department, OHSU Knight Cancer Institute, and Dennis J. Slamon, M.D., Ph.D., director of clinical/translational research at the University of California Los Angeles, Jonsson Comprehensive Cancer Center. Project Background During the past several years, researchers have come to understand that breast cancer is not a single disease but rather a spectrum of conditions that vary in their biology and response to treatment. Understanding breast cancer’s molecular diversity has been the driving force leading to the development of new treatments for this disease. Researchers are rapidly moving beyond the "one size fits all" approach into a new era in which breast cancer treatments will be tailored to the biology of the tumor. This project will address the most significant issues related to the three major subtypes of breast cancer — ER positive, HER2 positive, and triple negative (simultaneously ER negative, PR negative and HER2 negative) and will use that information to develop innovative, less toxic therapies with the potential to improve the treatment outcomes for women with this disease. One of the primary obstacles to effective cancer treatment is the ability of cancer cells to become resistant to treatments that are initially effective. Over a period of time, cancer cells are able to develop ways of "outsmarting" the drugs and agents designed to kill them, a phenomenon known as drug resistance. This Dream Team will study the driving mechanisms that lead to drug resistance in the three major breast cancer subtypes. Understanding resistance opens the door to developing innovative therapeutic agents that overcome this critical problem. Another area of interest is in the role that cancer stem cells play in resistance. Researchers now realize that the growth and spread of many cancers, including breast cancers, are influenced by the existence of these stem cells which are often highly resistant to otherwise effective treatments. The Team will study the ways in which this unique malignant cell population operates across the three major breast cancer subtypes, knowledge that could be important to the developing new treatments for breast as well as other major cancers. One critical component of this study will be to bring together the vast amount of information that exists about breast cancer into an integrated data base that will form a "discovery platform", or basis for identifying and validating new drug combinations and targets that can be pursued in clinical trials. The Team expects that these efforts will lead to significantly improved therapies for breast cancer, especially the most difficult to treat forms, within the three-year period. Status Update 6 month milestones In the first six months, the Dream Team focused on implementing a variety of integrated approaches to identify novel targets and mechanisms that may lead to later stage clinical trials opportunities. These so-called "discovery" studies included the development of (1) techniques that can measure drug impacts on single cells; (2) xenografts model from human tissues; and (3) 2D and 3D assays to examine the interaction of tumor cells with their environment in response to drug treatment. In addition, they completed the construction of a library of "short hairpin RNAs" (shRNAs) that will be used to systematically inactivate genes in order to identify potential new targets for therapy. The Dream Team also established a state-of-the-art bioinformatics and data analysis platform aimed at maximizing multi-site communication and collaboration. On the clinical side, the Dream Team made progress in the validation of new drug treatments to circumvent anti-hormone resistance in ER positive breast cancers. Potential candidates include VEGFR2 inhibitors, buthionine sulfoximine (BSO), c-SRC inhibitors, as well as PI3K inhibitors. They also showed that cells expressing the gene ZNF217 were more resistant to chemotherapy, suggesting that this gene could be good target for new therapies. For HER2 positive breast cancers, the Dream Team focused on the development and characterization of tumor cell lines model that demonstrate either acquired or de novo resistance to two different drugs: lapatinib or trastuzamab. Analyses of these preclinical data are ongoing, and potential targets will be selected for in vivo validation studies. The Dream Team also reported an interesting correlation between a deficiency in the product of the gene RAD51, and strong response to chemotherapy for triple negative breast cancers. Finally, the Dream Team developed a method to identify cancer stem cells (CSCs) in breast cancer cell lines. They reported data indicating that Herceptin may target those CSCs when used in combination with a chemotherapeutic agent. 12 month milestones In this period, the Dream Team continued their preclinical studies to determine how resistance arises in each subtype of breast cancer, and the best drugs that can be employed to overcome this resistance. Some of the planned targets, such as c-SRC, failed to be confirmed as drug resistance mechanisms in ER positive breast cancers. They began planning clinical trials to test other potential targets, such as VEGFR2, or cdk-4/6. Positive results for HER2 positive breast cancers were reported as the Team identified the loss of PTEN, combined with mutations in the PI3K pathway, as a potential mechanism of resistance. The Dream Team also reported the results of clinical trials demonstrating that the drugs Lapatinib and Trastuzumab have a synergistic effect when used in combination. The "discovery group" within the Dream Team assembled and classified several hundred breast cancer cell lines, and the bioinformatics Team began working to extract novel information from this large dataset. Progress on 3D models of breast cancer cells was also reported. There, the Team has made the interesting observation that those cells in the outer layer in 3D cultures seem to be protected from treatment with PI3K inhibitors. Their next step was to explore the molecular mechanism responsible for this phenomenon. 18 month milestones At the half-way point, the Dream Team translated some of their preclinical studies into the clinic; multiple clinical trials were started for each of the different types of breast cancers, and more were still in the planning phase. The Dream Team also reported extensive preclinical evaluation of T-DM1, a HER2-targeted agent which appears to be effective against HER positive breast cancer cell lines, even when Trastuzumab and/or Lapatinib failed. The Dream Team reported on their continued effort to discover new targets and agents for triple negative breast cancers, particularly those targeting DNA repair pathways which tend to be crippled in many triple negative breast cancers. Of note, the product of the gene PTPN12 seems to act as a tumor suppressor by interfering with the activity of a number of receptor tyrosine kinases, and appears to be mutated in 5% of triple negative breast cancers and absent from as many as 60%. This finding suggests that Sunitinib (or Crizotinib) and Lapatinib might have beneficial activity against these tumors. The Team also reported follow-up studies based on their observation that cells located in the outer layer of 3D cultures were activating a variety of survival signaling pathways leading to treatment resistance. They confirmed that this phenomenon was also evident for model breast cancer cells propagated in vivo, and for breast cancer tissue specimens in women treated with anti-breast cancer agents. These preclinical experiments have nominated combinations of targeted drugs and the BCL-2 antagonist ABT-737 for future clinical trials. 24 month milestones At the two year mark, the Dream Team had made significant progress at integrating "omics" data from various sources. They launched the SU2C Cancer Genomics Browser that contains both SU2C-generated and other published data from hundreds of cell lines. Most of the data from other platforms, such as those generated by other SU2C Dream Teams, or non SU2C-affiliated laboratories, can be easily ported to the SU2C Cancer Genomics Browser and added to the collection. The Team also continued to make progress in defining both prognostic and predictive genomic signatures. Notably, their preclinical work using cell lines and animal models led to the identification of genes potentially involved in the development of resistance to hormone therapy. These included MEK1/2, mTOR, B1-intergrin, FAK, c-Src, and PTEN. From these efforts, a new clinical trial was planned to test the effect of specific inhibitors of MEK1/2, mTOR, B1-intergrin, and FAK. The studies on the effect of the microenvironment on drug sensitivity continued moving forward with linkages to the clinical research components of the Team. Specifically, the up-regulation of Bcl-2 in the microenvironment suggested that it might create an opportunity for combination therapy using a Bcl-2 antagonist. The Dream Team also reported plans to move forward with a PARP inhibitor that was shown to be 100-fold more potent than other agents currently in the clinic; a phase I trial was initiated. The Dream Team plans to take the drug into trials for ER positive and HER2 positive breast cancers. 30 month milestones By the end of this period, the Dream Team has initiated or joined a significant portfolio of breast cancer clinical trials, clearly contributing to improving breast cancer outcomes. Of note are attempts to improve treatment of HER2 positive breast cancer using the new drug T-DM1. A neoadjuvant trial of the conjugate given in alone and in various combinations (including with Pertuzumab and no cytotoxic chemotherapy) should discern the magnitude of the treatment effect. Another promising study involves the new PARP inhibitor BMN-673 that appears to be so much more potent that the other existing PARP inhibitors. The Dream Team reported a fascinating opportunity for triple negative breast cancers with PTPN12, which is lost in 65-70% of triple negative breast cancer cases, exhibits tumor suppressor actions when reintroduced into breast cancer cells devoid of the enzyme. The Team is now exploring the possibility of a clinical trial with sunitinib and crizotinib, two drugs that are FDA-approved and marketed by Pfizer; contacts with the oncology development group at Pfizer have been initiated. Also, several key preclinical concepts generated by the Team are advancing to clinical assessment. For instance, the Team has continued its effort to tease apart mechanisms of adaptive resistance to targeted drugs exhibited by breast cancer cells in the context of 3D cultures. They identified the gene Bcl-2 as a critical component of treatment resistance. The Dream Team reported a number of clinical observations that provide a strong rationale for the use of Bcl-2 antagonists in combination with HER2 treatment. The various screens using shRNA libraries developed by the Dream Team since the inception of the project appear to have the potential to discriminate adaptive versus selected resistance mechanisms. Several screens have been completed; others are in the pipeline. Finally, the combined cell line screening studies and enhanced bioinformatics efforts have begun to produce genomic signatures related to drug sensitivity and resistance as well as prognosis for different breast cancer types and are suggesting ways to link drugs to treatment of cancers with specific genomic signatures. The Team intends to disseminate data and analysis tools broadly to other SU2C-funded Dream Teams and eventually the broader scientific community. 36 month milestones During this last period of the initial grant term, the Dream Team has continued to make significant progress in all studies initiated. They have completed some, and will pursue others through monies leveraged from other sources. The Team has continued to develop the work demonstrating the role of Bcl-2 in breast cancer cell survival, including the possible use of Bcl-2 inhibitors (e.g., ABT-737) in breast cancer treatment. They have also continued their efforts to develop the new PARP inhibitor (BMN-763) for possible use in breast cancer patients. Supplemental funding of $1.0 million was approved to allow a subset of the original Dream Team to translate these two promising avenues of research into the clinic. In this period, the Team reports the development of a robust system to assess genomic aberrations and drug responses in cells grown on cell spot microarrays (CSMA). Numerous studies are now underway using this system. Analyses of the 32 completed genome-wide RNAi screens using the third generation shRNA library (74,304 shRNAs targeting > 19,000 genes) have also continued; data has been analyzed for 16 of the 32 so far. For the sequencing, the Team has transitioned to high capacity platforms and developed a new protocol that will allow completion of sequencing in the first half of 2013. The Team has continued to develop and improve computational methods to analyze and visualize the wealth of data generated by this and other SU2C-funded Dream Teams. These include: PARADIGM, PARADIGM- SHIFT, Differential Pathway Signature Correlation (DiPSC), and the SU2C Cancer Genome Browser. The Haussler group is requesting further support from SU2C to support the UCSC Cancer Genomics Browser as a common resource to service all SU2C teams. The browser will be a platform for data sharing, and provides a coherent mechanism for teams to release data to the public. The browser will serve as a living data portal to view, access and retrieve past and current SU2C team data. As each team concludes their projects, the datasets generated under their awards could be made available at a common site that provides storage and retrieval, dynamic access and online exploration. If funded, The Haussler lab would work with all the teams to process and host their data sets How much money? Since Stand Up To Cancer was founded in May 2008, we have granted $161 Million Dollars to ten Dream Teams of scientists and researchers, one international translational research team and 26 high-risk, high-reward Innovative Research Grants. 100% of public funds go directly into research grants. A portion of the funds that are raised from major donations and third-party fundraising go towards administrative expenses and overhead. 3. Is there a "cap" on the amount the company will donate? Has this maximum donation already been met? Can you tell? No cap; the more money raised, the more funding there is for research. 4. Does this purchase put you or someone you love at risk for exposure to toxins linked to breastcancer? What is the company doing to ensure that its products are not contributing to the breastcancer epidemic? I went to the website store and looked at all their products. They sell clothes, blankets, pet sweaters & leases, jewelry, tennis shoes, blankets, cups, buttons etc. all with the StandUp2Cancer Logo. Nothing I saw would contain any toxins.
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I will answer the "are they collecting data?" question that was posed a few responses ago. The answer is "increasingly" and it is really dependent on where you were treated. Certainly, if you were treated within one of large healthcare systems, the answer is most likely "yes". This includes Kaiser Permanente and also Group Health where I was treated.
Cancer is only one of the things they are monitoring. They are looking for clues for other diseases such as diabetes and heart disease. One of the things Group Health data analysts tackled was pain management. They were able to discover within NINE MONTHS what would be the optimal drugs/doses and how to administer. It turned out to be much less than anticipated which led to better quality of life, much improved pain management, and less danger of addiction.
As more and more medical centers come on board, amazing opportunities for data mining and really understanding how disease progresses and early indicators. Some of these data systems have been in place for more than 10 years, so we are starting to get significant patient history. I find all this very exciting.
Wearable tracking devices are the new frontier in this arena. They collect information in real time and help with things such as glucose and heart monitoring. They also furnish data for further research and help patients manage their disease.
So (if off topic) where medicine is headed. I am sure that more data points will be added as we learn more. But an absolutely fascinating arena. - Claire
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Nancy HB- I appreciate your post greatly. Besides sharing the hormone signature of er pos proges neg ( my onc exclaimed " nobody knows what to do with progesterone!")and her 2 neg, I too, after much research, stopped all alchohol (except on airplanes!), refused the AI and made my yoga practice and nutrition my first line focus. My oncotype was just low enough to support a no chemo choice, and I am grateful for that. Thanks to those that started this informative thread!
Nancyhb can you tell me more about baby asprin?
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This is from the American Psychological Association:
Exercise Fuels the Brain's Stress Buffers
Exercise may improve mental health by helping the brain cope better with stress, according to research into the effect of exercise on neurochemicals involved in the body's stress response.
Preliminary evidence suggests that physically active people have lower rates of anxiety and depression than sedentary people. But little work has focused on why that should be. So to determine how exercise might bring about its mental health benefits, some researchers are looking at possible links between exercise and brain chemicals associated with stress, anxiety and depression.
So far there's little evidence for the popular theory that exercise causes a rush of endorphins. Rather, one line of research points to the less familiar neuromodulator norepinephrine, which may help the brain deal with stress more efficiently.
Work in animals since the late 1980s has found that exercise increases brain concentrations of norepinephrine in brain regions involved in the body's stress response.
Norepinephrine is particularly interesting to researchers because 50 percent of the brain's supply is produced in the locus coeruleus, a brain area that connects most of the brain regions involved in emotional and stress responses. The chemical is thought to play a major role in modulating the action of other, more prevalent neurotransmitters that play a direct role in the stress response. And although researchers are unsure of exactly how most antidepressants work, they know that some increase brain concentrations of norepinephrine.
But some psychologists don't think it's a simple matter of more norepinephrine equals less stress and anxiety and therefore less depression. Instead, they think exercise thwarts depression and anxiety by enhancing the body's ability to respond to stress.
Biologically, exercise seems to give the body a chance to practice dealing with stress. It forces the body's physiological systems — all of which are involved in the stress response — to communicate much more closely than usual: The cardiovascular system communicates with the renal system, which communicates with the muscular system. And all of these are controlled by the central and sympathetic nervous systems, which also must communicate with each other. This workout of the body's communication system may be the true value of exercise; the more sedentary we get, the less efficient our bodies in responding to stress.
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rivercaralee,
There have been numerous studies, many of which have been disseminated on these boards, about the benefits of baby aspirin (or low-dose aspirin) in helping prevent cancer.
http://well.blogs.nytimes.com/2014/08/11/aspirin-m...
There are other benefits of the low-dose aspirin, which far outweigh the minimal risks. In the end I figured it couldn't hurt, and would be something worthwhile to add to my arsenal.
I'm also grateful that the current "low dose" aspirins aren't those hideous orange chewable St. Joseph baby aspirins from days gone by - anyone else remember those? *ick*
Nancy
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Thank you Nancy HB!
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