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hp blogger Nancy Stordahl's Comments

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huffingtonpost entry

Does a Cancer Diagnosis Turn You Into a Better Person?

Commented Jun 25, 2014 at 09:55:04 in Healthy Living

“Yes, I do know. Thanks for understanding where I'm "coming from" here. And thanks for commenting too.”
huffingtonpost entry

Breast Cancer Awareness Without Mets Awareness Isn't Awareness At All

Commented Oct 13, 2013 at 17:08:30 in Impact

“Ann Marie, You are so very welcome. I hate it whenever I hear those with stage IV say they feel alone and yes, abandoned during not only October, but all year long. You're not! Thank you so much for your kind words. And thanks for making those copies! Keep speaking out. Your voice needs to be heard. Thanks again.”
huffingtonpost entry

Breast Cancer Awareness Without Mets Awareness Isn't Awareness At All

Commented Oct 7, 2013 at 17:34:44 in Impact

“Hi Carolyn,
Metastatic breast cancer should be at the heart of all the awareness campaigns instead of left out on the fringes. Prevention and early detection are indeed critical areas to address, but they are not the end all and do not tell the whole story, as you well know. And yes, fear holds us back, but it must never silence us. We must talk about the entire spectrum of this wretched disease. Thank you so much for reading and taking time to comment.”
huffingtonpost entry

Breast Cancer Awareness Without Mets Awareness Isn't Awareness At All

Commented Oct 5, 2013 at 17:22:26 in Impact

“Valerie,
Thanks so much for the kind words about my blog. Well, actually we still need awareness since breast cancer, cancer period, is a global issue and many women are not fully aware, nor do all women have access to quality health care. I wish we could change the name to Breast Cancer Education Month. That would work better for a lot of reasons. Thanks for commenting. I appreciate it. I hope you're doing well.”
huffingtonpost entry

Breast Cancer Awareness Without Mets Awareness Isn't Awareness At All

Commented Oct 4, 2013 at 12:41:44 in Impact

“Hi Beth,
It's understandable that you're sick of the pink. It's not really about pink or pink ribbons at all though is it? I actually still like pink. Good for you for choosing to take back October! And you're so right, we cannot ignore the metastatic bc community. It boggles my mind how the segment of the bc community in need of our greatest support is so often left behind. Thanks so much for reading and commenting.”
huffingtonpost entry

Breast Cancer Awareness Without Mets Awareness Isn't Awareness At All

Commented Oct 4, 2013 at 12:37:03 in Impact

“Hi Sticki Vicki,

I just watched the video. Incredible. I agree that the press loves pushing the feel good/positive attitude stories. In and of itself, not a bad thing, but there must also be that dose of reality. And that whole positive attitude thing is one of my biggest cancer pet peeves. This does not mean I am a negative person, but one's attitude does not determine survival. And the Metastatic Breast Cancer Network is another great organization to support too. Here's a post I wrote a while back about attitude in case you or anyone else is interested.

http://nancyspoint.com/having-an-attitude-about-attitude/

And for the record, I will keep telling/sharing the stories of those living with mbc. Thank you for your comment and for sharing the link.”
huffingtonpost entry

Breast Cancer Awareness Without Mets Awareness Isn't Awareness At All

Commented Oct 4, 2013 at 12:22:15 in Impact

“Susan,
Good advice. I would also suggest Breast Cancer Action (there are others, too, of course) as a good organization to support. Their "Think Before You Pink" campaign is spot on. Thanks for your comment.”
BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

Commented May 15, 2013 at 14:55:39 in Healthy Living

“leggomyairplane, I think patents such as those you mention are wrong in principle as well. I also think it's always important to "make noise" regarding issues one cares about, especially when the stakes are high. I certainly don't think any justices will care what I am saying, but I'm still going to speak out. This issue is too important for me not to. Thanks for your comment.”
Griever's Gold: Cherished Memories

Griever's Gold: Cherished Memories

Commented Apr 25, 2013 at 09:36:44 in Healthy Living

“Ashley,
I love the way you offer advice in such a beautiful and gentle way. I completely agree that embracing memories keeps us connected to our loved ones who are no longer physically with us. Thanks for writing this.”

hp blogger Ashley Davis Bush on Apr 25, 2013 at 12:35:06

“You're welcome! I appreciate your thoughtful comments.

Peace,
Ashley”
Coping With Cancer's Ugly Sister: Guilt

Coping With Cancer's Ugly Sister: Guilt

Commented Apr 23, 2013 at 13:12:06 in UK Lifestyle

“Great topic. Guilt is generally a big waste of time, but yet we still manage to feel that way from time to time after a cancer diagnosis, or at least I do. I am BRCA2+, so you might think I would feel less guilty about my diagnosis since I actually have something to "blame" it on. Not true. I have three siblings who have not had a cancer diagnosis, so it must be my fault, right? Oh yes, the mind games happen. On top of that, there's so much talk these days about things a person can do to try to avoid getting cancer in the first place like eating right, exercising, etc, so again - there's guilt because we know we didn't do enough... We all need to remind ourselves that even if a person does "all the right things," this might prevent risk, but there will never be any guarantees. Your cancer is not your fault, so shed the guilt. Great advice, but it is easier said than done that's for sure. Thanks for the terrific post.”

hp blogger Laura Price on Apr 23, 2013 at 14:09:02

“Thanks Nancy... Yes, I think it's one of those things that's impossible to just stop feeling, but we can fight it and deal with it in other ways. Good to connect with you! Laura”
BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

Commented Apr 13, 2013 at 21:42:16 in Healthy Living

“Susan,
I agree. Myriad is a molecular diagnostic testing company, however, not a pharmaceutical company.
And you're certainly right, Susan, there are huge profits at stake here for them. It's going to be interesting to see what happens. Thanks so much for commenting.”
BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

Commented Apr 12, 2013 at 16:24:48 in Healthy Living

“Jonathnisbit,
While I completely agree that there are indeed environmental factors that contribute to causing cancer which should be better studied, I don't think it's responsible to make a blanket statement saying bras and sit-down toilets are to blame here. I do believe genetic research plays a role in figuring all this out. Science is where we will find the answers and genetic research is part of this science. It's only one component, but an important one. And until we do know more about causes, learning one is genetically predisposed to developing a cancer is important information to know. I speak from experience on this. I don't agree that genetic research is a distraction, although many other things probably are. I appreciate your comments.”
BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

Commented Apr 11, 2013 at 14:13:06 in Healthy Living

“Ralph E. Kelley,
Frightening comparison. Thanks for chiming in on this discussion.”
BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

Commented Apr 11, 2013 at 14:12:01 in Healthy Living

“Jonathanisbit,
I'm not entirely sure what you mean regarding harm caused by the genetic theory. I gather you think there are too many prophylactic procedures being done and too much emphasis on genetic predisposition. I'm not sure the article you shared is relevant to my post, but thanks for commenting.”

JonathanIsbit on Apr 12, 2013 at 06:04:08

“The harm comes because the research establishment is wasting valuable time and resources barking up the wrong tree. Your article is about "why everyone should care" about BRCA1 and BRCA2 being patented. You say, "This monopoly creates a barrier standing in the way of further breast and ovarian cancer research." My point is that genetic research contributes nothing to prevention or treatment (unless you consider prophylactic surgery "treatment"). The same idiocy has been applied to colon cancer. I believe that the cause of both breast cancer and colon cancer is the western lifestyle (bras and sit-down toilets respectively). In both cases, this genetic distraction will never locate or remove the real cause.”
BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

Commented Apr 11, 2013 at 09:59:09 in Healthy Living

“McNameeShane,
Thanks for the added info. A bad precedent was set. It's time to set things right.”
BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

Commented Apr 10, 2013 at 21:36:36 in Healthy Living

“Act Out,
Thanks for your comment. Things get a bit murkier in the area you mention, but as for human genes, that's crystal clear in my mind. They should not have been and should not be patented.”
BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

Commented Apr 10, 2013 at 16:56:46 in Healthy Living

“LuneKeltkar,
I'm not feeling certain by any means, but I am definitely feeling hopeful the Supreme Court will set things right here. This is a landmark case for sure. Thanks for your thoughts.”
BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

Commented Apr 10, 2013 at 16:50:51 in Healthy Living

“WeWillWin,
The word that stands out for me in your "NFL" comment regarding Myriad is greed. No need to say more. Thanks for all your comments.”
BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

Commented Apr 10, 2013 at 10:35:05 in Healthy Living

“WeWillWin,
Legally, there are in fact barriers to research, since any testing, research or experimentation on these two genes is technically in violation of Myriad's patents as I understand it. I agree with you about the value of Myriad's tests. Other labs are ready to offer cheaper and more comprehensive (and perhaps better) testing for cancer risk, but cannot include the BRCA genes in their tests due to the patents Myriad holds. The major point of my article is that the ramifications of this case are indeed significant for all us. The future of personalized medicine is perhaps at stake. Here's another excellent article you might wish to read. Thanks for the additional discussion.

http://www.forbes.com/sites/danmunro/2013/04/08/data-war-reaches-the-supreme-court/
BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

Commented Apr 10, 2013 at 10:10:51 in Healthy Living

“Racerboy,
Thank you for chiming in on this discussion. You make some good points!”
BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

Commented Apr 10, 2013 at 09:09:10 in Healthy Living

“tracerhaha1,
Many would agree with you. This particular case only addresses human genes. Should human genes be patented? I say no. Thanks for you comment.”
BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

Commented Apr 10, 2013 at 08:44:30 in Healthy Living

“Dan,
I don't think it's quite that simple either. There are many factors (some known and some not) that determine if a person does or does not get cancer. Of course, having this mutated gene does not mean a person will get cancer, but the risk has been scientifically proven to be higher if one does have the mutation lurking in her/his DNA. I did read the article you shared. I do think the point made that we have become a breast cancer culture has some validity, but I think it's a bit irresponsible to make a blanket statement saying bras cause breast cancer. Thank you for commenting.”

JonathanIsbit on Apr 10, 2013 at 12:26:20

“Certain genes may make one more susceptible to the environmental cause of breast cancer, just as certain genes make some smokers more susceptible to lung cancer. But imagine if oncologists didn't know about the link between smoking and lung cancer, and just focused on the genetic "predisposition". Imagine surgeons performing "prophylactic pneumonectomies" the way they currently perform prophylactic mastectomies, based on genetic factors. When the cause of breast cancer is finally recognized, the willful ignorance and criminal behavior of the breast cancer treatment industry will be the scandal of the century.”
BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

Commented Apr 9, 2013 at 13:04:48 in Healthy Living

“MightyCaseyMedia,
Well said. Thank you.”
BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

BRCA1 and BRCA2 Gene Patent Debate Reaches the U.S. Supreme Court: Why Everyone Should Care

Commented Apr 9, 2013 at 13:00:12 in Healthy Living

“WeWillWin,
I'm not sure what you find so strange about my article. Many others have written about how these particular patents do indeed inhibit research collaboration. I'm including a link at the end of my comment in case you might wish to read about this further. And no, Myriad cannot be forced to share their data, that's a major sticking point here. Also, I'm not sure routine testing has ever been going on. Generally, women are tested only if there's a clear indicator of hereditary risk at play. As for Myriad, there's no need to feel sorry for them. They've profited quite nicely and will undoubtedly be just fine.

Your opinions don't mesh with mine, but I respect them and thank you for sharing them.

In my mind, human gene patenting is standing in the way of personalized medicine. Here's that link:

http://www.pbs.org/wgbh/nova/next/body/gene-patents-and-personalized-medicine/

WeWillWin on Apr 9, 2013 at 23:18:38

“I look at Myriad the way most people look at a big NFL star. Some will sneer at the salary of a marquee player. They will say, "Why don't teachers make so much?" or "Anybody could do their job". Truth is for every big star there are probably 1,000 people who tried and failed and work at home depot. They put in the effort and time and simply weren't good enough. Drugs, tests, and devices are tremendously difficult to get to market. There should be a handsome payoff. Again, in this case their greed may have backfired because the test is falling from favor in at risk women.”

WeWillWin on Apr 9, 2013 at 23:10:59

“The idea of patenting a discovery is jarring because strictly speaking, you can't do this. Furthermore, I could not conceive of a practical way of barring the isolation of any gene by patent. Clinical tests are one thing. But barring gene analysis-and the research that depends on it- is another. I need to read portions of the patent. I should say that I agree with you 100% so far as the important distinction between a discovery and an invention go. But I thought it bore mentioning that even in patients with suggestive family histories (as you rightly said, routine testing has not been going on except for people deemed at risk which is the cohort I am referring to), the value of these tests has come into question. They don't lead to personalized medicine, they lead to expensive medicine. I think as our guidelines and the government steps in and tamps down on some of this stuff, one of two things will happen. Either companies will stop making drugs, or they will devise business models that result in a cheaper cost at market. I have below a link to the publicly known sequence of BRCA1. In fact you can see the mouse version of the gene too. Or gorilla. In the bibliography you will notice almost 2000 references to BRCA research. Clearly this does not mean that there are no research barriers.. I want to thank you for confusing me.

http://www.ncbi.nlm.nih.gov/gene/672
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