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Survivors who have used only alternative treatments

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Comments

  • lago
    lago Member Posts: 11,653
    edited June 2011
  • Enjoyful
    Enjoyful Member Posts: 278
    edited June 2011

    Wow, Tastykake is a sponsor?  Somehow, that bothers me more than Big Pharma.

  • [Deleted User]
    [Deleted User] Member Posts: 323
    edited June 2011

    Really feeling sick right now.

    Explains everything, even the fact that I don't have access to a Report Button.

  • Enjoyful
    Enjoyful Member Posts: 278
    edited June 2011

    Well that's odd.  Why wouldn't you?  Have you ever had access to it?

  • kira1234
    kira1234 Member Posts: 754
    edited June 2011

    You don't have access to the report button? I never new they took it away, but then I've only used it 1 time and that was for spam.

  • [Deleted User]
    [Deleted User] Member Posts: 323
    edited June 2011

    Yes, I've reported one post since I've been here and just wanted to report a post a few pages back.  I have no report button.

  • PatMom
    PatMom Member Posts: 322
    edited June 2011

    enjoyful wrote:

    Wow, Tastykake is a sponsor?  Somehow, that bothers me more than Big Pharma.

    BCO is based in Philadelphia, so is Tastykake.  It is a local company supporting a local organization that helps women with cancer.  They are very active and supportive in the community, from scouts to professional athletic teams and everything in between.  I wouldn't be worried that they will cause a pro-snack cake slant to the site.

    Edited to add the quote that I was responding to.  Being at the top of a new page the response made no sense without it. 

  • Enjoyful
    Enjoyful Member Posts: 278
    edited June 2011

    Well that's not right.  I'm going to write to the Moderators about that.

  • kira1234
    kira1234 Member Posts: 754
    edited June 2011

    I wonder why. I see the report post on every post.

  • Lynn18
    Lynn18 Member Posts: 284
    edited June 2011

    Blue:  I am sorry you have to deal with PD, too.  My mom has it and it is no fun.  Thanks for that link.

    Sunflowers:  Great idea about an Integrative Medicine forum.  I take vitamin D3 and my doctor monitors my levels.  I also take CoQ10.  I have been taking a beta blocker for many years and there are a couple of recent studies that suggest beta blockers might prevent a recurrence.  Something I am going to talk to my doctor about. 

  • kira1234
    kira1234 Member Posts: 754
    edited June 2011

    lynn18, I also take a beta blocker. If you read the report I believe it is only one that has shown to possibly prevent cancer. I plan to talk to my Dr. to see if I should switch to that one.

  • [Deleted User]
    [Deleted User] Member Posts: 323
    edited June 2011

    Enjoyful, you mean Big Pharma. 

    Well, am sure glad I did not spend one penny on this site, was going to contribute my little share, as I truly appreciate a lot of women here, but nope, they will not get my hard earned money for all the grief they have caused me.

  • Lynn18
    Lynn18 Member Posts: 284
    edited June 2011

    Kira, the one I take is Atenolol.  I have not taken it consistently over the years.  One report I read said it especially seemed to help those with triple negative.

  • kira1234
    kira1234 Member Posts: 754
    edited June 2011

    I'm also on Atenolol. I know the report I read was somewhere on BCO. I will see if I can find it. I do know it compared that Beta Blocker to Atenolol.

  • kira1234
    kira1234 Member Posts: 754
    edited June 2011

    Ok I think this is the one I saw on BCO.

    http://www.reuters.com/article/2011/05/31/us-beta-blockers-idUSTRE74U6OD20110531

    cp418 is the person who posted this article.

  • Ang7
    Ang7 Member Posts: 568
    edited June 2011

    SusanK8~

    Now I have heard everything...

    Please don't bust on the tooth fairy and Santa Claus.Wink

    They are very dear to me.

    My problem is that when I asked a question on the Alternative thread I was told that I was not welcome there.  I was not trying to cause trouble.  It is a shame that one cannot even ask a question.  I did not think it was right for someone to bash chemo.  I am also interested in Alternative and I should be able to ask questions even though I did chemo...

  • [Deleted User]
    [Deleted User] Member Posts: 323
    edited June 2011
  • Lynn18
    Lynn18 Member Posts: 284
    edited June 2011

    Kira, there were actually two different studies.  There is a synopsis on the Triple Negative Breast Cancer Foundation website comparing the two.  One of the studies showed that propranolol worked, not atenolol.

    Thank you for that link, 

  • Enjoyful
    Enjoyful Member Posts: 278
    edited June 2011

    Luan -

    I did write to the Moderators.  I'll let you know when I get their response.

    E

  • [Deleted User]
    [Deleted User] Member Posts: 323
    edited June 2011
  • kira1234
    kira1234 Member Posts: 754
    edited June 2011

    Yes thats what I'm reading as well Lynn18. I am going to talk to my Dr. to see if I could be on propranolol instead. My thinking is I need the Beta blockers anyway for the blood pressure, so why not use the one that might prevent the BC from coming back.

  • [Deleted User]
    [Deleted User] Member Posts: 323
    edited June 2011

    Enjoyful, I appreciate, but don't bother. Thank you

  • [Deleted User]
    [Deleted User] Member Posts: 344
    edited June 2011
    AnnNYC wrote:

    I'm a little surprised at the sense of "ownership" of this thread expressed by people who are not the original poster, and most of whom signed up with BCO after WornOutMom did.

    "Ownership"?  REALLY?  (oops I used caps..I'm NOT screaming!).  How many times has one particular thread that you post on been referred as.......so and so started this thread and these are the rules....(oops...fragmented sentence...thanks to Shokk...who taught me! Laughing

    kira1234 wrote:

    AnnNYC, I think WOM has been off BCO for a while. When I pulled up her info her last log in was some time in May. That's not saying she isn't here under another name. I would hope by now she has made her decision. Her original post was back in Feb.

    So, people really do check in to see who has logged on.....like Blue waving to PatMom because she checked and found out that Pat had logged on...what a freaking hoot.

    Y'all must be bored.

    I don't agree with what the OP or some other women post about alternative vs. conventional, but I sure as heck wouldn't come here and continue to harass and stalk them.  Why can't you LEAVE IT ALONG?...OOPS..caps again..is that against the rules?  Oops and fragmented sentence (thank you SHOKK!).

    Carry on.

    To the ladies who are doing alternative only though I may not agree with you....ignore these posts and if I were you I wouldn't post on this thread until THEY leave.  Then when you come back to post and if they come back to follow you around you'll know FOR SURE why.  That's just my recommendation.

  • AnnNYC
    AnnNYC Member Posts: 236
    edited June 2011

    Shirley -- I was simply referring to the fact that this topic was started by WornOutMom.

  • Lynn18
    Lynn18 Member Posts: 284
    edited June 2011

    Kira, good idea, since you need to take a beta blocker anyway.  I think they are pretty safe, with few side effects.

    BCO is pro-snack cake?  lol 

  • 208sandy
    208sandy Member Posts: 582
    edited June 2011

    I am cautious about the beta blocker "story" I am on one because of high BP BUT they can also cause diabetes and that's a disease I am trying to dodge (my dh passed away due to complications after 21 years of diabetes and he was on beta blockers for 30 years so.....) I get a little leery when "they" decide a drug is "good for everyone" remember statins????

    Lago - did you go on acetyl L-Carnitine right after chemo - I still have neuropathy in my feet 3 years after finishing treatment and I'd sure like to try this supplement out.

    Sandy

  • lago
    lago Member Posts: 11,653
    edited June 2011

    Not of us that have gone the conventional route have bashed alternative. At the same time when someone says chemo doesn't work it's tough to stay quiet… that's just not true. It doesn't work for everyone but it works for many.

    I have never insulted or stalked anyone on this site… but I have been stalked and insulted. I find blocking those individuals is the best solution if you don't want to deal with the nastiness.

    ------------------------------------------------------

    As far as the pharm giving money to support this site… thank goodness. This site wouldn't be here if it weren't for their donations. Nothing is for free. If all the members here donated then maybe bco.org wouldn't need these corporate sponsors but many women and men have our hands full just paying for treatments… conventional or alternative.

  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793
    edited June 2011

    Hi Sandy,

    I was in the study Lago cited (SWOG 0715).  I do not have neuropathy.  However, I don't know which group I was assigned to either.  I took for about five months starting the day of the first Taxol infusion.

    It might be worth a try.  They got this idea as this supplement is used to treat patients with neuropathy associated with diabetes, so wondered if it would apply to chemo patients.

    I took two 500 mg capsules 3x per day.  I didn't have any side effects that I remember.  What a pain, and was so glad when the last day came. - Claire

  • Wabbit
    Wabbit Member Posts: 68
    edited June 2011

    Shirley ... FYI ... there is a separate thread for ONLY Alternative and nobody else has been posting on it as requested by the OP.

    I think you have confused that one and this one which has always been a mix of both. 

  • Lynn18
    Lynn18 Member Posts: 284
    edited June 2011

    208sandy:  The beta-blocker "story" is actually two studies that were published in the Journal of Clinical Oncology.  You are correct, some beta blockers affect blood sugar levels;  I wouldn't recommend them to anyone.  But some of them of us need to use them, and I found the studies interesting.

    Lago: I have just started blocking certain posters and I really like this feature.  It filters out a lot of the nonsense and makes it easier to see the more interesting posts.  Thank you, BCO.