Need help from all of you brave women!!! Questions to ask

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  • Rdrunner
    Rdrunner Member Posts: 309
    edited April 2013

    Where the whole premise of the FDA and kick backs to docs fall totally apart is when you look at other countries.. you know the ones that do exist outside of the USA, the ones that have socialised medicine. Im curious as to how much people spend monthly on these alternative medicines. I have no problem with alternative or complementary medicine, what I have a problem with is ignorance and pulling studies from extremely questionable sources and pulling studies that are 10 years old.  Freedom to choose is always a good thing, stupidity is not.

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  • Racy
    Racy Member Posts: 2,651
    edited April 2013

    Tv, please start a new topic with your latest questions on the chemo forum and you will get good advice on options for chemo and keeping your hair.



    Check out the cold caps thread.



    Don't make any decisions until you get input from the ladies here and maybe get more than one onc opinion also.



    And definitely ask for the oncotype test.



    Good luck and keep in touch.

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  • Mardibra
    Mardibra Member Posts: 1,111
    edited April 2013

    Good point rdrunner.

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  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    Actually, many European countries, especially, Germany are BIG in using alternative and/or complimentary therapys to conventional...China also has been using herbals VERY effectively against cancer....has become a big part of their mainstream treatment. The United States is one of the countries who uses the MOST chemo etc...This post has really turned so childish that I feel really bad for the OP, TV....I am no longer going to participate in this ridiculousness...go ahead, you can have the last word.

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  • Momine
    Momine Member Posts: 7,859
    edited April 2013

    No, not everything is testimonial. I paid for my chemo, then got reimbursed. Each treatment cost about 6-700 euros and that included the fee for the chemo room and for my onc team. Some patients who had different insurance brought in their own drugs bought under their respective drug plans. 

    It is possible that some US docs get kick-backs on treatment, but it is certainly not universal. 

    Many alternative docs make a profit on the supplements they prescribe too. Shrug!

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  • purple32
    purple32 Member Posts: 3,188
    edited April 2013

    TV
    I'm so sorry you have come to this forum and ended up being surrounded by such controversy~

    My husband ( he had colon cancer in 2009) had a  similar situation in terms of that ' one lone node".  He had chemo ( first  infused by port and then xeloda) and rads and proton radiation. He is a walking miracle today.  Had huge surgery, ileostomy and nine mos later  ileostomy reversal.  He works 7 days a week and runs circles around most ppl I know!  ( We never say never with cancer, but ... one day at a time)

    You asked for opinions.  I would look into the chemo in your case. Each case is different.

    Having said that , once you have crossed your bridge , please be sure you have explored risk reduction for lymphedema.http://www.stepup-speakout.org/

    You had a  lot of nodes out , and you dont want any add'l worries.

    Good Luck  to you----whatever you decide!

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  • nancyh
    nancyh Member Posts: 2,644
    edited April 2013

    TV - Given your BRCA2 status and the fact you have node involvement, I think you should be as conservative as possible and go with conventional therapies like chemo and tamoxifen.  That's not to say you couldn't also use some alternative therapies, but keep your oncologist in the loop either way as some supplements interact negatively with chemo.  Also, one of the most helpful things we can all do for our cancer is exercise.  

    Best of luck to you!

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  • Momine
    Momine Member Posts: 7,859
    edited April 2013

    TV, I second the recommendation of the onco test. As for chemo that doesn't make your hair fall out, talk to your onc. However, the hair loss is unpleasant, but it comes back.

    I was like you, in that I barely took aspirin before this whole thing got rolling. There is a lot of generic alternative info floating around the internet. Be cautious - much of it is hot air and designed to make you buy overpriced supplements, which the producer will assure you is the only one that is "pure" or "potent" enough ... They usually won't outright claim to cure cancer, it will be implied however.

    Get the oncotest, and find a second onc so that you can get two opinions about what to do. I found that very helpful, because it gives you a sense of what is a given and what is a grey area.

    As far as things you can do yourself, the first is exercise. It may be the single most effective thing you can do to keep the cancer at bay. Get 10 hours of exercise a week, even if it is just walking. Some people swear by yoga, others love zumba, whatever works for you, go do it.

    Put yourself first. Get your rest, get your exercise, take care of yourself, and if it means others have to pick up some slack, tough!

    If you are overweight, lose weight.

    Cut out red meat, excess alcohol, high-fat dairy and white carbs. You want to aim for a diet rich in veggies and fruits and one that keeps your blood sugar staple.

    Since you are BRCA+, you need to discuss with your doctors the possibility of removing your ovaries.

    Take probiotics. Healthy intestines are less likely to get cancer and along with fiber a healthy gut flora may help eliminate excess estrogen.

    Be well.

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  • Momine
    Momine Member Posts: 7,859
    edited April 2013

    TV (and anyone else looking for info), here is an example of what I posted above about being cautious with unsupported info.

    On several sites you will find the claim that at least 75% of oncs would refuse chemo for themselves or their family. 

    When I googled the claim verbatim, I got a bunch of hits, where it was phrased the same way (alternative sites freely plagiarize each other, and it is often a bad sign when a piece of info is repeated like that), with no citation (another red flag).

    It turns out, as I suspected, that the survey in question is old, that it pertained to metastatic disease and that it concerned a specific chemo agent, which at the time was new and untested.

    Here is the short article explaining this: anaximperator.wordpress.com/20...

    "The first thing that stands out is that the 1985 (!!) survey was not, as Philip Day claims, about all available therapies for lung cancer, but about cisplatin, a then new chemotherapy with considerable side effects. The question also pertained to the use of cisplatin as a palliative treatment for “symptomatic metastatic bone disease,” i.e. for incurable (non-small-cell) lung cancer. The 1985 survey found that about one-third of physicians and oncology nurses would have consented to chemotherapy in a situation like this."

     

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