THINK BEFORE YOU PINK

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  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    I think we all have to assume that if they are a MO with any kind of following, that they are making big bucks off of the treatment we're receiving.  Really though, I don't see how my MO could be making a lot off the tamox he recommended for me...it's a fairly cheap drug, but then, when I think of the numbers of people who are on it, maybe so.  I don't really blame the doctors...they get their marching orders from the AMA who sets down guidelines that they must follow, and if they deviate, they can lose their license to practice medicine.

    I didn't need chemo and refused rads, so right now, the only thing I'm giving a try is tamoxifen, and I stopped that two nights ago because I was having such flu like symptoms that I didn't want to get out of bed!  I am recovering from a cold, but please, this is not normally the way I feel when I have a cold.  I know my own body, and something else was at work there.  I'm going to wait a few days and start it up again, but there is no way in he!! that I'll live with those kind of SE's daily.  If I call the doctor he'll just tell me that it's not being caused by the tamox, so I'm making my own decisions.

    As for donations to bc research, we should be donating to the organizations that are working on the vaccine, which will be the biggest breakthrough since Herceptin.  That's as close to a cure as we're going to come in my lifetime, and I hope to see it. 

  • gardengumby
    gardengumby Member Posts: 7,305
    edited February 2012

    Kaara - good luck with the tamoxifen.  I had a HUGE fight with my oncologist over it, as I had SO MANY side effects.  I finally told her I was stopping it.  She could give me something else or not.  After I stopped it we found I had terrible bad blood clots from it.  Like you, though I didn't do chemo or rads, so the only choice I had was hormone therapy or living in fear.  But I just couldn't do the tamoxifen anymore.  However, I am post-menopausal, so can take AI's, not just SERMs.  My mom took it for 10 years, though, and I don't think she had any side effects at all - similar genetic package but still so different.

    I agree with the idea of donating for a vaccine. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    gardengumby,

    I agree with most of what you say. But I have to disagree with you about big pharma. They really are into making money and that's the bottom line.  I don't want to hijack this thread so will just briefly mention an article you might like to look at on the FDA and drugs thread written by Marcia Angell M.D., past editor of the New England Journal of Medicine. She blatantly exposes what the FDA and big pharmas are doing - it's an eye opener and a must read. I believe the website is www.wanttoknow.com   Certainly narrow mindedness is one of their problems but this isn't what drives them. Cancer drugs alone bring in over 1 BILLION dollars a year. Frankly, they would lose money if a cure were invented - it's just like the auto industry. Cars that could run on cooking oil will never be developed because of huge oil interests.

    tucker

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    oops, the link above is missing a few things. here is the right one:

    http://www.wanttoknow.info/truthaboutdrugcompanies

    tucker

  • Kadia
    Kadia Member Posts: 314
    edited February 2012

    None of my docs show on the ProPublic list. They all work for a major university/research med center. I wonder if there are restrictions on receiving speaking fees or even meals from pharmaceutical cos....

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    Kadia

    That's good to hear. I think ProPublica is a good site. It doesn't show all the docs who have received money from pharma and the pharmas who have listed docs have done so because it was court ordered :) so much for transparency eh? I don't know if docs who work in research centers are prohibited, I don't think so... 

    BTW, what do you think of the junk that's in cosmetics and perfumes that is linked to bc?

    tucker

    PS I used to live in northern Calif. Do you know where Grass Valley and Nevada City are?

  • Kadia
    Kadia Member Posts: 314
    edited February 2012

    Maybe my docs are just little fish in a big pond.



    Tucker, GV and NC are lovely. We go there a few times a year.

  • thenewme
    thenewme Member Posts: 1,611
    edited February 2012

    My onc is on the list too, and received less than $200. 

    I'd love to see a comparable list for alternative docs, holistic doctors, naturopaths, etc. I'd be willing to bet their financial disclosures would be a *LOT* more "incriminating" than licensed M.D.'s as a whole. 

  • gardengumby
    gardengumby Member Posts: 7,305
    edited February 2012

    Grass Valley is one of my favorite places to visit in northern Cal. 

    Tuck, I don't think you and I are that far off in our opinion(s) regarding big pharma.  I have no respect for them and certainly don't think they are in ANY way concerned about people.  I have no doubt that they will do anything they can do to increase their profits - I just don't think they will actively work to block a cure (or prevention, i.e vaccine) for cancer.  However, if it's found that other medication contributes to cancer - that i believe they will disregard as long as they possibly can. (Just like the tobacco companies and lung cancer...)

    I blame the exorbitant price of healthcare in the US almost totally on the fact that healthcare is a business - a very profit oriented business.  And in addition to us making them a LOT of money we (the large we, not individual we) also contribute to the cost by generally mistreating our bodies. And I could go on and on and on about drug company advertisements. So many people go to the doctor and demand that they walk away with a scrip for "something" - because as far as they are concerned, that's what doctor is for - giving them a quick "fix" for what ails them. I'm more at the opposite end of the spectrum.  It used to be that I'd tell the dr not to bother, as I wasn't going to take it (whatever "it" was anyway) - now (other than with the cancer drugs) - I just take the prescription for whatever and throw it away.  I got sick and tired of fighting with the doctors over it.  I also always take my husband with me when I go to the doctor, so that we can discuss their recommendations together.  Fortunately, he's totally on board with me about NOT taking medicine whenever possible. 

    About 5 years ago I was going into the doctor for a procedure and he asked what medications do I take.  I said "none".  He said, what about asthma medication, I said I control my asthma with diet.  He said what about blood pressure medication, I said I don't have high blood pressure, etc..  he simply couldn't believe that a person my age (mid-fifties at the time) wasn't taking an assortment of drugs. (I think he asked me about asthma medication about 4 times in different ways - like I wouldn't know if I was taking an inhaler, or a pill or SOMETHING...  Frown)

    Anyway, thanks for the link it was interesting reading.  Smile  And thanks for letting me sound off...

    P.S. None of my doctors were listed as receiving money from pharma - however, the University of Washington (where I go) receives quite as bit.  I believe most research hospitals/universities do (which is unfortunate in so many ways.)

     

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    thenewme,

    I don't quite understand your statement.

    Naturopaths and holistic docs don't do business with big pharma.  Since most are not millionaires, what BIG disclosures would you expect?

    tucker

  • Kadia
    Kadia Member Posts: 314
    edited February 2012

    The supplement/"natural" treatment business is pretty lucrative too. That might be what thenewme was driving at.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    It may be lucrative but it's not nearly as lucrative as Big Pharma. And Big Pharma wants to keep it that way. BTW the naturopathic physicians I know don't get paid vacations courtesy of Big Pharma nor do they drive fancy cars and have six figure salaries. Sure, there are some that are in it for the money but we have lots of information about these professionals and many choices so it is w/in our power to choose.

    Anyway this topic belongs on FDA and drug thread :)  - so back to pink ribbons ~

    tucker

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited February 2012

    gardengumby:  You wrote:  None of my doctors were listed as receiving money from pharma - however, the University of Washington (where I go) receives quite as bit.  I believe most research hospitals/universities do (which is unfortunate in so many ways.)

    There's a reason for that!  Research hospitals and universities don't have the facilities/abilities to produce drugs. They do often (in fact, most often) provide the initial "bench" or basic research, then they need to interest a pharma company to do what is called "applied" research - developing the formulae and the best administration method (pill, infusion etc.).  The pharma company usually does "in vitro" testing as well as animal (e.g., mouse) studies.   Then the pharma company has to go back to the hospitals (and groups of docs) to do more animal studies.  If these show promise, the pharma company supplies the drugs, and the hospitals (or physician groups) supply the patients for their "in vivo" drug trials.  This is what is termed "bench to bedside", and is how nearly all drugs come to fruition.  And yes, money is certainly involved in this process.

    I agree completely with your earlier point that the U.S. healthcare system (system?  what system?), being almost entirely profit-driven, is the reason for outrageously high costs -- in drugs, tests, health insurance, hospital stays, doctors' fees etc.  It's well past the time that the U.S. should be looking at other first world countries to pick and choose the best of their systems and adopt them.

  • thenewme
    thenewme Member Posts: 1,611
    edited February 2012

    Hi Kadia and Lindasa,

    *Precisely!*

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited February 2012

    Just wanted to add:  If you are looking for a place to donate in support of BC research, please check out your closest university/hospital medical research facilities and ask about their BC research.  They'll be more than happy to talk to you and to tell you about what they're doing -- AND they'll give you straight answers!  In fact, you can develop an extremely rewarding relationship with BC researchers and it will make you feel you're doing something very worthwhile.

  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    lindasa:  That was explained very well...thank you.

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited February 2012

    There are umpteen different reasons for being angry with Big Pharma.  The fact that they spend more on advertising than on R&D; that they try to justify their outrageous prices by saying that it costs them SO much to bring a drug to market (but not as much as it costs to advertise it, obviously!); that they tweak the original formula just prior to the patent running out, so they can market essentially the same thing; that physicians have an open door policy for drug reps, and so on and so on.

    But this is capitalism and the free market at work.  Should the fact that Big Pharma's customers are sick people make a difference?  Should healthcare be a right, and not just a privilege for those who can afford it?  Should there be controls on advertising and pricing? 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    Thank you for your input lindasa. And yes to your questions.

    tucker

  • Kadia
    Kadia Member Posts: 314
    edited February 2012

    Yes to lindasa's questions and one of my own: should all companies--whether big pharmaceuticals or alternative manufacturers--be held responsible for the safety and efficacy of the products they sell? 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    And yes again...also caveat emptor.

    tucker

  • AMP47
    AMP47 Member Posts: 200
    edited February 2012

    Tuckertwo-you post some disturbing statistics.  Most women I talked with about the efficacy of chemo being very poor do not want to accept the thought of questioning their doctors.  

    Good article.   

  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    AMP47:  If I had never questioned my doctors I would be addicted to sleeping pills and anti anxiety meds right now.  After that experience, I will research every option and make my own decisions, even if those decisions go against what conventional medicine dictates.  If it turns out I am wrong, then I accept total responsibility for that decision.  I prefer to use a natural approach to preventing the return of my low grade early stage bc, and in return have a better QOL.  The future holds no guarantees.

  • gardengumby
    gardengumby Member Posts: 7,305
    edited February 2012

    Amen to that, Kaara.  It always astonishes me that on the one hand doctors/etc say we must be involved in our own health decisions, and then they get all pissy at us when we actually want to be.  Talk about have your cake and eat it, too (speaking of which, I really miss cake Wink). 

    As you say, the future holds no guarantees.  I've tried to be as proactive as possible, but I am also determined that I will not live my life solely in an attempt to not get cancer.  I eat "smart", but that for me may not be the same as for others, as I do still eat tofu on occasion, and am not willing to totally give up many of the things I love (though wheat is definitely in my rear-view mirror, as it makes me ache far too much.)  I take my hormone medicine, but will almost undoubtedly take an occasional "vacation" from it, so that I can remember what it's like to be able to move around without pain.

    Though many doctors seems to think they are actually god come to earth, I am not willing to think of them as such.  They are a facility to be used so that I can enable my own good health.  The numbers of changes in what is considered to be "good" or "bad" for us during my lifetime is truly mind-boggling.  If they are right now, then they were wrong before.  I'm going to follow what I believe to be best for me, and hope to live a number more healthy years.

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited February 2012

    A slightly irreverent joke about docs:

    Three surgeons were out on the golf course enjoying a round when they saw a thunderstorm approaching.  They ran for the largest tree on the course to stay dry, but it was struck by lightning, and -- oh dear -- all three of them died.

    As they approached the Pearly Gates, St. Peter asked them what they had done during their lives.  They all proudly stated that they had been surgeons.  St. Peter hummed and hawed, and then told them that, because there weren't very many docs in Heaven, he would let them in.

    They walked (drifted?!) through the Gates and looked around.  They spied an older fellow wearing a white coat and with a stethoscope hanging around his neck.  They said to St. Peter "Who is that over there?  Is he a doctor?"

    St. Peter replied "No, that's God; he's just playing doctor".  Wink 

  • thenewme
    thenewme Member Posts: 1,611
    edited February 2012
    Laughing Lindasa!  Now *THAT's* funny!
  • Kadia
    Kadia Member Posts: 314
    edited February 2012

    Wow. I feel exceptionally fortunate that most of the doctors I have seen during BC and previously have been kind, compassionate, flexible, and respectful. There have been a few egomaniacs, but mostly caring people working really hard.

  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    lindasa:  LOL!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    I've been helping a dear friend who is a Naturpath work to try to get the state to recognize, and have licences for them.  They do in CT, and most insurance companies therefore cover the treatments.

    I have great respect for most of the Naturpaths I've known - and learned a lot that has really helped me, especially complimenting the other medical treatments I've had for bc. Also have had the MOST wonderful MD's, oncologists, like Kadia - just can't say enough good things about each of them.

  • AMP47
    AMP47 Member Posts: 200
    edited March 2012

    Kaara - Can I assume you are not taking tamox or an AI?  Did your oncologist suggest you take one or the other for protection for 5 years? 

    I am on my third AI and having an enormous problem staying on Aromasine.  Often, I wonder if other women have problems with the AI.  A study shows that women who react as I do, have total blockage of estrogen which creates more severe side effects. 

    AMP

  • gardengumby
    gardengumby Member Posts: 7,305
    edited March 2012

    AMP47 - which AI's have you taken?  I had terrible problems with tamoxifen, but am managing fairly well on letrozole (femara).  Also, what is the study you mention?  I'd like to read it.

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