Need to know something...

hummingbyrd
hummingbyrd Member Posts: 950 Member
edited March 2014 in Breast Cancer #1
I need to know something...
a friend of mine who posted here with some very good, allbeit controversial, information was advised to no longer use this site to post medical information.
This person was told this site was for discussion of feelings and sharing of emotions and how "to cope not treat".
I need to know how the rest of you feel.
I shall lay it on the line with my response which is
"HOGWASH"
This site belongs to us, the cancer patients, and it is called Cancer SURVIVORS Network. It is my humble opinion that part of surviving is staying on top of cutting edge medicine, sharing experiences with others in regards to what treatment has worked and what failed and to let each other know if we hear of something new that is available.
I think we are all intelligent enough to know that this is not advice given professionally and that it is our responsibility to run anything said by our physician first, most of it has to be done by order of MD anyway.
So now I ask you...are we going to let administration of this site dictate to us that we cannot share medical advice, which means no responses to the previous question posted about zometa or do we take a stance and let them know we share whatever we want as long as it is morally and legally correct?
What say the board?
hummingbyrd

Comments

  • Ellison
    Ellison Member Posts: 68
    #2
    Hummingbyrd,

    I am ever so greatful for any old or new information about treatments.

    Also,I can appreciate all the support I get when I am having a come apart day.

    This is what being a SURVIVOR of this disease is all about... Taking responsibility for oneself...
    Participating in our own recovery. Having connectons with other survivors is part of the journey.

    I participate in other sites for stage 4 survivors and some of the posters have some absolutely great information about old treatments and new ones.

    Honestly, since I have been on this site, I don't know many that are stage 4. That is why I post on other sites.

    I do enjoy this site very much. It is not always about me but giving back.

    I think they are making a BIG mistake! If it gets to the point that I have to be afried to ask a question, or share about a treatment, I don't have time for it...

    I need the freedom of being able to have the whole picture in order for me to get through this disease one day at a time. I have had enough taken away from me. We are all just trying to survive the best way we know. We have to stick together in how we feel and what we know about this disease as long as it is morally and legally correct...
  • Ellison
    Ellison Member Posts: 68
    #3
    Hummingbyrd,

    I hope the administration will keep an open mind and read what we have to say before they take it completely off the board.

    ellison
  • wimpy
    wimpy Member Posts: 58
    #4
    I think I understand where the Administration is coming from with their concerns. They may be worried that this kind of info could degenerate into " quackism" and there are people on this site that are desperate and sometimes looking for anything that might work. I don't think that they want to be responsible for someone following what might be seriously bad advice that they got on this site. It may not so much be about what your friend posted as the potential for postings of this kind to get out of hand.

    wimpy
  • lindatn
    lindatn Member Posts: 229
    #5
    We need to be able to say what we want and when we want on our sight. I just became stage IV three weeks ago. I am so afraid yet that I would say anything I am welcome to hear. Back in chemo for bone and liver mets. Anyone else who had liver mets sweat non-stop until you could hardly do anything? hymmingbyrd, Pray you are up and around again. Linda
  • Future
    Future Member Posts: 133 Member
    #6
    I appreciate the information shared on this site. Has helped me when discussing treatment options with my physician. As long as some one is not trying to sell a product, I don't see a problem.
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #7
    lindatn said:

    We need to be able to say what we want and when we want on our sight. I just became stage IV three weeks ago. I am so afraid yet that I would say anything I am welcome to hear. Back in chemo for bone and liver mets. Anyone else who had liver mets sweat non-stop until you could hardly do anything? hymmingbyrd, Pray you are up and around again. Linda

    Linda I had lung, liver and kidney mets Oct 2004. Most people write you off at this point, so I didn't tell anyone. I have found a positive attitude is the best weapon and fear seems to give this stuff an advantage. Together we can stand in agreement that the cancer cells in your body are going to respond to treatment and they can just go take a hike! Talk to the cancer, tell it to leave, there isn't room in your body for it AND your normal cells, this is your body and you are giving the cancer cells "the boot". Eviction notice served! Mine responded to carboplatinum and taxotere and I really think a lot of credit has to go to tumeric. As I said check out the MD Anderson website.
    As for "quackery", as long as people don't use the site to peddle products administration should not feel responsible for information shared. If they do then the above post to Linda will be inappropriate, as would my post to the zometa question. Do you really want to have your hands tied so tightly here?
    hummingbyrd
  • 24242
    24242 Member Posts: 1,398
    #8
    As a survivor I appreciate the information brought forth and know it is one thought out there and need to know other thoughts to be able to make my own decisions. I think medical community gets one tracked in their thinking and often keep us in the dark about things.
    Keep this site open to all thoughts and all minds.
    It is our support that we need.
    Tara
  • DAWNVEIT
    DAWNVEIT Member Posts: 3
    #9
    Ellison said:

    Hummingbyrd,

    I hope the administration will keep an open mind and read what we have to say before they take it completely off the board.

    ellison

    THIS IS MY FIRST TIME TO THIS SITE, SO I REALLY DO NOT KNOW WHAT TO SAY.
  • mc2001
    mc2001 Member Posts: 343
    #10
    Humm,
    I think this site is for support as well as advice. If I ask someone for some information, it should be freely given. Thank you for bringing this issue to light. God bless.
    -Michael
  • mssue
    mssue Member Posts: 242
    #11
    I say lets start the New Year off right - in UNITY - This sight has been a blessing to us all -giving us a place to explore different options allowing us to share all of our highs and lows-Communicating with others going through the same things,checking out how others fair through their treatments and/or trials.This site should remain just as it has been ,an Open Forum.We are all intelligent enough to know right from wrong,and act accordingly.
    When I originally came to this site it was to look for CANCER INFORMATION-thus it is at the top of this page,I just stumbled on to the DISCUSSION BOARD. I'm so glad and thankful I did-my gratitude is inmeasurable.
    Right now my Sister is going through ovarian cancer,this is her 2nd battle with cancer,so besides checking things out here I jump to different DISCUSSION groups to find information,get support and/or give support.I sure hope we can stay as we are -I would really miss everyone and all of our freedoms of communication.It really would be a shame.
    (((HUGS)))
    Sue
  • livin
    livin Member Posts: 318 Member
    #12
    Hi, I think any information given here is always I mean always good for someone. If not for yourself but maybe the next person. Everyone is different whats good for one may not be good for another. All info. is cruicial. Its up to the individual if she or he wants to follow up on something. At this point in our lives we are fighting with everything we have to survive Cancer. Every post I have seen usually tell you that the person is not a Doctor and to ask your Doctor about what you have read.
  • timlou
    timlou Member Posts: 60
    #13
    I do not believe we have had that same problem on the colo-rectal site, I browse both as my daughter and I have breast cancer and my husband has colon. We get very helpful, "friendly" advice that we always take back to our onco's to discuss. That is what makes America great. As long as your friend is not advocating a magic potion that convinces someone to give up all other avenues I say go for it and this American Cancer Society site should say the same. Lou
  • roxanne53
    roxanne53 Member Posts: 154
    #14
    timlou said:

    I do not believe we have had that same problem on the colo-rectal site, I browse both as my daughter and I have breast cancer and my husband has colon. We get very helpful, "friendly" advice that we always take back to our onco's to discuss. That is what makes America great. As long as your friend is not advocating a magic potion that convinces someone to give up all other avenues I say go for it and this American Cancer Society site should say the same. Lou

    I think it is very important to share the information of what is available and what we know about the various treatments, drugs. WE all need support, information and knowing the new advances out there.

    The is places is for the sharing of personal exeriences and what works or not. we check with our own medical teams about the information.
    Do not need the magic potions, solicitors or quacks.

    I have posted some medical information on this site and also said where it came from so others can check for themselves or with their docs.

    I do believe we are intelligent people and we are not alone and we need to know.

    Roxanne
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #15
    Hello Everyone,

    The discussion boards, as well as the other features of the Cancer Survivors Network, are designed for the exchange of support and anecdotal information, which includes treatment information within the context of personal experience. The goal of this exchange is to facilitate support and encouragement amongst our members. Posting medical information out of this context lends itself to appearance of the promotion of specific treatments and/or research with would be a violation of the terms and conditions of the Cancer Survivors Network. Discussion regarding treatment options and how they relate to you or a loved one's personal cancer experience is always encouraged. If you have any questions, please do not hesitate to contact us at webmaster@acscsn.org.

    As always, if you have any specific medical questions regarding diagnosis or treatment, we encourage you to contact the American Cancer Society's National Cancer Information Center (NCIC). They can be reached at 1-800-227-2345 or by clicking on the "Contact ACS" link at the top of this screen.

    Take care and be well,

    Dana
    CSN Dana
  • gdpawel
    gdpawel Member Posts: 523 Member
    #16
    hummingbyrd said:

    Linda I had lung, liver and kidney mets Oct 2004. Most people write you off at this point, so I didn't tell anyone. I have found a positive attitude is the best weapon and fear seems to give this stuff an advantage. Together we can stand in agreement that the cancer cells in your body are going to respond to treatment and they can just go take a hike! Talk to the cancer, tell it to leave, there isn't room in your body for it AND your normal cells, this is your body and you are giving the cancer cells "the boot". Eviction notice served! Mine responded to carboplatinum and taxotere and I really think a lot of credit has to go to tumeric. As I said check out the MD Anderson website.
    As for "quackery", as long as people don't use the site to peddle products administration should not feel responsible for information shared. If they do then the above post to Linda will be inappropriate, as would my post to the zometa question. Do you really want to have your hands tied so tightly here?
    hummingbyrd

    hummingbyrd

    It is really a shame hummingbyrd, that this board stymies some people with a no nonsense, sometimes harsh and honest writing style. I believe in "measured" moral support and consider it important. But overkill with sugar is useless and sometimes dangerous. To force down posts that have usefulness and value is undesirable. It is very unfortunate to see useful, time-consuming and dedicated research unappreciated in favor of pabulum that seldom adds a day to a cancer patient's life.

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