No Travel Required - KRAS-Variant Mutation and Breast Cancer
No Travel Required
A Study of the Inherited KRAS-Variant Mutation and Breast Cancer Risk Clinical Validation of the Role of microRNA Binding Site Mutations in Cancer Risk, Prevention and Treatment (NCT02253251) Summary Researchers have identified an inherited genetic mutation—a KRAS-variant—that may increase a person's risk of developing breast or other types of cancer. This study will follow participants for 10 years in order to analyze the association between the KRAS-variant mutation and cancer risk. The researchers will also look at the effect that different lifestyle factors have on cancer risk. All participants will have a saliva sample tested for the KRAS-variant. To be eligible, participants must have a personal or family history of breast cancer. MiraKind, Incorporated Contact person: Joanne Weidhaas, MDPhD Phone: 203-671-1308 Email: joanne@mirakind.org If you speak with this site, please mention that you were referred by BreastCancerTrials.org Tip: Offer to email or FAX the research coordinator a copy of your Health Summary prior to your first conversation. Use the Print/Save Health Summary feature to print your Health Summary or save it to your computer. |
Re: No Travel Required - KRAS-Variant Mutation and Breast Cancer
I'm very unhappy with Joanne Weidhaas.
I participated in the original study (all related correspondence available upon request) for which she recruited through the Army of Women. At the end, she scheduled a webinar to present results, but the Army of Women cancelled it. The reason the Army of Women cancelled the webinar is the reason for my distress. Joanne sent an advertising email from her "non-profit foundation" to each of the participants offering to sell them their DNA results for the "nominal" fee of $295. This was a violation of the terms of her agreement with the Army of Women, but worse, it really took advantage of the women who freely gave of their time and genetic material. This was the text of the AoW cancellation notice: "You may have received an advertisement to purchase your individual KRAS-variant test results from a CLIA certified laboratory from the non-profit group, MiraKind, or a for-profit company, MiraDx. This test was included as part of a research study through the Army of Women®. Our agreement with the researchers who use the Army of Women® specifically precludes them from reaching out to our members separate from the research. We do not know what the results of the KRAS test mean clinically, and at this time this study has not been published, so it has not been subjected to scientific scrutiny. As a result, we have decided to cancel the research webinar scheduled for Wednesday, March 26th 2014." Speaking as one who has been genotyped and who is currently having her full genome sequenced, there is nothing "nominal" about $295 for those results. I grind my teeth every time I think about that woman. If you are thinking about participating, at least do a little googling to see what the literature has to say about the KRAS-variant. IMO, she's beating a dead horse and has been for some time. |
Re: No Travel Required - KRAS-Variant Mutation and Breast Cancer
Yes, I received the same information from Dr. Love's Army of Women.
I was not offended. I welcome all and any new information on my specific cancer. I do grit my teeth over the numerous requests I get from the Army of Women for money. The $295 fee was a bit tacky, but there also was an offering of applying for the $295 fee to be covered if you could not afford to pay. I suspected most of us would qualify for it to be paid and I did not bother to apply. The "fee" to me would be more of a non tax deductible donation in the furtherance of cancer research. Since I have a strong history of family breast cancer I think that I will look into doing the testing. I've already donated my DNA. There is no such thing as a free lunch. Someone has all your DNA now, and folks will find a way to profit from it. |
Re: No Travel Required - KRAS-Variant Mutation and Breast Cancer
Do read about the KRAS-variant first. She's chasing her tail. She got that patent, and even though the research has not borne out, she won't let go.
My 23andMe DNA genotyping profile is uploaded to openSNP so it's available to all and sundry. When my genome sequencing results are done, they will be publicly available through the Personal Genome Project. I have no concern about my DNA being public, nor do I have a concern about others profiting from its use. I'm involved in several different projects that may well result in profit, including one in which I donated a skin sample for the growth of stem cells. I strongly object to what Joanne did, though. Her study was already funded, and we gave her our time and genetic material. To charge us for the results was...grasping and petty. I'm done with her. |
Re: No Travel Required - KRAS-Variant Mutation and Breast Cancer
Gosh, and how do you really feel Rhodalea?
So I am curious after the genotyping, did you get the results too? What did you learn? To be honest, if we could dig into the backgrounds of our researchers - many more of us would likely be offended. This is why I am a fan of being an active participant in our own health and care, something that you do beautifully. Crap, I am still finding ways to procrastinate on the computer and not getting things going yet. The exercise is a double edge sword. It will knock you on your ass in the beginning. It took 2 - 3 months to get past the exhaustion afterwards. I was returned to a before cancer level of health after Dr. Joe's work with me. Truly was amazing. I should be exercising today. Blah, must get off computer and go to the kitchen. |
Re: No Travel Required - KRAS-Variant Mutation and Breast Cancer
Oh . . . maybe the genome study would be perfect for Linn65?
Can you post under clinical trials more information for others please. |
Re: No Travel Required - KRAS-Variant Mutation and Breast Cancer
Well, I paid for the genotyping, so I have 900k individual results. That's how I know that Provigil won't work for me and that I shouldn't take Ritalin while I'm taking tamoxifen.
For the same reason, I knew in advance that I don't carry the KRAS-variant, although Joanne claims only her patented test can detect it. I simply don't have the SNP, so it's not an issue even if it were an issue, which it isn't based on the research to date. I don't care about the backgrounds of the researchers. I do care about the manner in which they conduct their research. I care about their professional ethics. I want to know that they live up to their agreements in the context of their professional lives. What they're doing otherwise is not my business. Computers are very useful for procrastination. On the other hand, I've been glued to the keyboard for 30 years, so it no longer feels like procrastination to me (even though I know that sometimes it absolutely is exactly that). Today, however, we have snow, so I feel justified in taking a day off and doing lazy things. Still have to clean the litter boxes, though. The cats won't allow me to slack on that. |
Re: No Travel Required - KRAS-Variant Mutation and Breast Cancer
I don't think either 23andMe or the Personal Genome Project is appropriate for the purpose, Lizbeth. 23andMe is genotyping, not genome sequencing, so all you get are SNPs. For cancer, that's not especially helpful. Choosing treatments requires sequencing the tumor. I know there has been research using genotyping, but it's limited. Information has been posted before about 23andMe, and I think several people here may be enrolled in the collaboration between 23andMe and Genentech.
The Personal Genome Project...yes, eventually, you'll get a genome sequence, but it will take a long time. I finally had the blood draw last spring, and I don't expect results until...I have no idea when. Depends on funding. I had to drive from New Jersey to Boston to have two vials of blood taken. To put that into perspective, I initially started enrollment prior to being diagnosed with cancer, and I picked it back up after treatment was done. It took almost two years before there was an open blood draw, and I drove 600 miles round trip to have it done. The draws are generally done in Boston or in Mountain View, CA, although they are looking at additional locales. This is something to be done for its own sake, not for urgent medical reasons. If someone reads this and finds it interesting, they can easily google it, but I wouldn't feel comfortable recommending either to sick people as a tool for addressing illness. Even with the results in hand, you either have to do painstaking research on your own or find someone knowledgeable to interpret your results. Ordering genetic tests through a medical professional is a better bet because you get the specific testing you need, plus interpretation, and it's likely that insurance will pay for it. |
Re: No Travel Required - KRAS-Variant Mutation and Breast Cancer
I have a friend with a rare cancer that did a genome study. She is almost the only one out there being treated for a bile duct cancer at her age. Now I am more curious as she and her doctors gave me the impression that this is more prevalent. Her cancer status is similar to Linn65 as she also has had a recurrence.
I meant the professional backgrounds, not personal backgrounds. You don't like Dr. Weidhaas, I get that. I do appreciate the information. I will read up on it. Still interested in research about breast cancer that runs in families. My family lost at least 2 women to breast cancer and 2 more are dealing with it. I am BRCA negative. |
Re: No Travel Required - KRAS-Variant Mutation and Breast Cancer
Oh . . . so this is why the 23andme sounded so familiar - that's right they were the ones on the news that the FDA sent this letter to. I remember now. And wasn't there something else that was reported, let me google some more.
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Re: No Travel Required - KRAS-Variant Mutation and Breast Cancer
Oh, and what a nuisance that was.
23andMe got whacked by the FDA for the health reports, so anyone who orders the test after November 2013 only receives the ancestry component. Everyone who had health reports before that, however, kept them. I still have mine. My daughter has hers. The raw data remained unchanged, of course, until 23andMe upgraded to the new chip. My father and my grandson are on the newer platform. Fewer SNPs, but apparently they're more relevant and useful. So what everyone does now is to use the API to access third-party analysis tools, and some of us continue to do what we always did--research the individual SNPs and clusters of SNPs on our own using information in PubMed and at genome.gov and elsewhere. 23andMe's health reports were pulled from GWAS studies, and they were pretty basic. The FDA's issue wasn't/isn't with the data, because the chip is a standard medical testing device, and the testing itself is done in a CLIA-certified lab. But the health reports hadn't been subjected to the required scrutiny for what the FDA decided to call a medical device (the reports themselves), so Anne got spanked. (Edited to add: Her life was in great disarray before and during this mess--well-publicized husband trouble--so it's not a surprise that she lacked the focus necessary to keep the FDA placated.) I'm still one of the admins on the FB page for the petition to the FDA asking it to stop being ridiculous. Not sure how I got sucked into that, but the petition eventually got delivered. I have no idea whether 23andMe is still working on this or if they're satisfied with the way things are. The ancestry component is a big sell, and the company is still able to use the data for medical research even if it cannot provide neat little reports to its customers. I think the other thing you're looking for is the lawsuit. Some ambulance-chaser in California got the bright idea to have his partner's wife order the test just before the health reports got axed, and then he filed a class-action suit. I haven't checked on the status of that in a while. I do know that most of the active 23andMe'ers sent him nasty emails, and a lot of people opted out in advance. I'm not sure what he hopes to gain. The test costs $99, and 23andMe has a pretty high customer satisfaction rate. Moreover, a good portion of those who take the test are more interested in ancestry than they are in health. I'll be interested to see how it all shakes out. Edited to add: This is the latest on the class action lawsuit: http://blog.ericgoldman.org/archives...-v-23andme.htm |
Re: No Travel Required - KRAS-Variant Mutation and Breast Cancer
Actually I had an email about family tree research is why 23andme is familiar.
Oh, I see, you have a personal interest in the company. Do you have any kind of professional background in genetics? I do not see how you can compare a company like 23andme to that of professional researchers with a doctorate background from places like Yale, Stanford and UCLA. I think I'll just contact Dr. Weidhaas and get the real story. Thanks for the information but I put more faith in those that are working directly with cancer research. |
Re: No Travel Required - KRAS-Variant Mutation and Breast Cancer
To the extent that I'm a customer of 23andMe, I have a personal interest in the company. If you asked other 23andMe'ers, you might find that many of them feel the same. I don't own stock, though. I'm simply fascinated by the promise of genetics for personalized medicine and what it can tell us about ourselves, and I've done my best to learn as much as I can about it. I signed up for the PGP so I could contribute to the science. I purchased 23andMe because I wanted some instant gratification with respect to my own genes. I had family members tested so I could work on the family tree as a gift to my grandson, because I realized how much of our history had been lost when my grandmother died.
Most of 23andMe's researchers have doctorates from the institutions you mentioned or similar. This is the scientific advisory board: https://www.23andme.com/about/advisors/ and this is research team: https://www.23andme.com/about/researchteam/ As I mentioned, I don't think 23andMe is appropriate for those who are hoping to choose between various cancer treatments, because for that you need to have the tumor itself tested. I hope Dr. Weidhaas is able to provide you with the information you seek, but 23andMe does test for the KRAS variant (rs61764370). SNPedia has an entry with links to the various articles in PubMed about this SNP. http://www.snpedia.com/index.php/Rs61764370 |
Re: No Travel Required - KRAS-Variant Mutation and Breast Cancer
I'm still mulling over this - all those impressive backgrounds and they still got stomped by the FDA?
Well perhaps 23andme tests for things - but are they doing specific research to the treatment of my cancer? At least Dr. Weidhaas is researching an area that matches my cancer's characteristics, family history, multifocal, etc. etc. I will read up on this and look forward to learning more about the research that all these controversial individuals are involved in. |
Re: No Travel Required - KRAS-Variant Mutation and Breast Cancer
Management screwed up, Lizbeth. They didn't keep up with the paperwork, and the FDA got tired of waiting.
I think part of the problem is that in spite of all the disclaimers, some of those who came later interpreted the health reports as diagnoses, which they are not. And of course, doctors started complaining when their patients came in armed with 23andMe results, much as doctors complain when patients bring in Dr. Google results. There were some interesting saves, though, that you can read about on the blog. 23andMe is doing a study with Genentech re Avastin. I think some people in this group are enrolled. They also sell data to other researchers, but I haven't lately looked into who those researchers are. I do try to keep up with the health questionnaires, however, so that my own data is relevant for the purpose of research. (Selling the data is one way that 23andMe is able to a) further research and b) lower the cost of the test to consumers. Everyone who signs up can agree to it or they can opt out. I opted-in.) Joanne Weidhaas may well be doing other research. I haven't followed her since the Army of Women thing. I just hope it's with something other than the KRAS-variant, because she seems to me to be barking up the wrong tree. It looked promising at first, but it just hasn't panned out. Most of what comes up in first and second page Google results has her name attached, but everything else is other scientists saying "nope, that's not it." |
Re: No Travel Required - KRAS-Variant Mutation and Breast Cancer
Oh I clicked on the blog and it seems to have some nice stories about folks connecting to lost loved ones. Anything else I have to get onto other things and don't have time to dig.
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Re: No Travel Required - KRAS-Variant Mutation and Breast Cancer
Well, yeah, there are pages and pages of blog posts--including many about breast cancer genetic research--but here's one about someone who dodge a bullet:
http://blog.23andme.com/23andme-cust...in-her-genome/ |
Re: No Travel Required - KRAS-Variant Mutation and Breast Cancer
My husband is homozygous for C282Y and H63D. Very familiar with the phlebotomy treatment of this. I wouldn't exactly call that "dodging a bullet" - but it was nice that she found it early.
Some people that suffer from hereditary hemachromatosis also develop Porphyria Cutanea Tarda due to a deactivation of the uroporphyrinogen decarboxalayse enzyme in the 5th step of the production of heme. This disease is nicknamed the Vampire disease, or the Werewolf disease. The Vampire part comes from the reaction to light from the porphyrins that build up in the skin. Exposure to sunlight creates blisters and the skin to tear easily. The Werewolf nickname comes from the excessive hair growth. This is an excellent example of a health situation where one may experience anemia that is caused by excessive ferritin and supplementing with iron is a very bad idea. I had forgotten about all the reading I did on this. Brings back memories of before breast cancer. Wow. |
Re: No Travel Required - KRAS-Variant Mutation and Breast Cancer
What's weird is that you would think heterozygotes would have some protection from low iron, but at least in my case, that's not the case at all. I've had intermittent anemia for most of my life, and with it comes very low ferritin, followed by restless legs. Given the alternative, it's just as well, I suppose--hemachromatosis can lead to some pretty dreadful ailments if untreated--but you'd think that the gene variants could have at least tried to arrange themselves with a little more utility.
I was just recently looking over some of the porphyria templates at Livewello (a third-party site where the 23andMe raw data can be analyzed). I don't think I'll ever figure out what this anemia business is all about--seems to be related to my thyroid--but I've certainly ruled all the more obvious explanations. I almost wish I'd been born 50-100 years later, because I'd really like to be around when our genes become less a mystery and more a guidebook for lifestyle. |
Re: No Travel Required - KRAS-Variant Mutation and Breast Cancer
LMAO, I think there is a reason that you are living now.
When you are dealt cards can you pick 4 Aces every time? Nor can you pick which genes are hetero- or homozygous. Perhaps the "corsets are too tight". You are attributing intermittent anemia to genes when the cause maybe unrelated, or indirectly related. Stop promoting 23andme as a place for patients to get medical information. This is exactly why they got stomped by the FDA in the first place. Until the company alters its business model and offers that the test to be ordered by physicians the company is just digging a deeper grave. You are currently being part of the problem with 23andme, not part of the solution. |
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