Recommendation for Stage IV Specific Treatment Thread

Lowrider54
Lowrider54 Member Posts: 2,721
edited June 2014 in Comments, Suggestions, Feature Requests

http://community.breastcancer.org/forum/8/topic/750550?page=1#idx_9

Hello Moderators...I think after posting the above - perhaps the best solution would be to pin a thread at the top of the stage iv forum where hormonal, chemo and rads treatments could be discussed specifically as they relate to stage iv.  The other forums are great but so many on the hormonal forum are early stagers who have an option to take the stuff or not - if we don't take it - we die. 

Collectively, it seems most like all the stage iv stuff in one place so a new forum would not be desirable - I don't know if you can make sub forums under a main forum but the stage iv treatments, although the same drug, are given for very different reasons.  It would be very nice to have one place for all the info. 

Thanks for listening.

Low Rider 

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Comments

  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited April 2010

    I agree, and I'm not Stage IV.

    Lowrider ... A dear friend who was Stage IV made a comment to me once when I said I wasn't taking HT, that she wished she was me and could take HT.  She was triple negative and Stage IV.  That really brought home to me what you're talking about. Sometimes earlier stage gals don't realize that for Stage III and IV, HT may save their lives.

    What is forgotten is that years ago, HT was discovered specifically for Stage IV treatment, long before it became a preventative treatment. 

    Hugs,

    Bren

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  • Alpal
    Alpal Member Posts: 1,785
    edited April 2010

    When I was on Arimidex it quickly became apparent that even tho I also had the aches and pains associated with it, they didn't seem so bad to me as they did to the other posters. Then it dawned on me - that stuff was keeping me alive! Joint pain seemed like a reasonable trade off. Now that I'm no longer taking it I moan and groan about how awful it was, LOL!!! It's all a matter of perspective. So, Lowrider, I agree with you that this would be helpful.

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  • bygracealone
    bygracealone Member Posts: 183
    edited April 2010


    More than just the hormonal treatments are needed to be shared. Stage IV women want to have access in one place the treatments that are working. We know that Herceptin works for HER2+ and I have noticed it appears to shrink liver mets really well. We want to have this thread pinned to the top of our forum so that if you are ER+ with lung mets you can see easily what treatments are working for others in the same situation. What gets rid of liver mets for HER2- patients. This sort of information. The search engine is just too general and it takes soooo long to wade through all the general references. Moderators, please make this happen for us!

    Sandra who is really looking for a solution to progressive liver mets!

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  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited April 2010

    I agree that more than just hormonal stage iv treatments should be in one place - as a part of the stage iv forum.  It just happened to be what I am in and found soooo frustrating finding information and the hormonal forum is primarily early stages that use the al's as a preventative.

    Moderators - PLEASE help us pin two thread to the top of the stage iv forum - Stage IV Hormonal Treatments and Stage IV Chemo Treatments.

    Can I do that or must you guys?

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  • ElaineD
    ElaineD Member Posts: 2,265
    edited April 2010

    And maybe add in another pin for targetted therapies and clinical trials? We really need to be able to access information relevant to our stage, rather than plough through pages of treatments for lower stages. Needs are completely different, and it can be disheartening and frustrating trying to find the info we need. Surely having our treatment options kept seperate to the rest of the boards, is not an unreasonable request?

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