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Comments

  • bestbird
    bestbird Member Posts: 232
    edited October 2016

    shepkitty, thank you so much for your feedback about the MBC Guide!

    I am so glad you find it helpful, and would love to send it to every mbc patient worldwide if that were possible. There's absolutely nothing like having information at one's fingertips when it comes to making treatment decisions and contending with side effects!

    I hope to receive hundreds, if not thousands, of additional requests for this free booklet, and input such as yours helps make this possible!

    With best wishes,

    - Anne

  • kachincolor
    kachincolor Member Posts: 62
    edited November 2016

    Dear Anne,

    I can't even begin to express how helpful I found your MBC Guide. I was just diagnosed with Metastatic BC at the end of August only 18 months after being diagnosed with stage 1B IDC which was treated with surgery, chemo and radiation. Your guide helped me come up with questions of my MO which led me to getting two more opinions which were quite different in their approaches and perspective on my case. Thank you! Thank you. What a gift for all of us!

    With gratitude,

    Kimberly

  • bestbird
    bestbird Member Posts: 232
    edited November 2016

    Kimberly, I am so glad that you found the Guide helpful, and that it precipitated discussions between you and your medical team that provided you with a wider range of possibilities! It is my fervent wish that everyone whose life has been touched by mbc be armed with information from my MBC Guide so that they can provide helpful input to their doctors when making decisions about their individual case.

    Thank you so much for your feedback!

  • patchingpeg
    patchingpeg Member Posts: 14
    edited November 2016

    Thank you, thank you, thank you! What a resource!! I suggested it to another member on a different thread. What a body of work and how kind of you to share your time and talents in this way! I mentioned on the Ibrance thread that I am comforted and confident with more information. I also mentioned that I am trying to recreate - 23 years later - all that helped me cope well. One of thing that I really relied on was a local support group.

    So, I found a new one and signed up for a meeting. I didn't go. In the eight weeks since my diagnosis, I have had to counsel several survivors and the friends & family of survivors in regard to how this could happen. I was the poster child (well, old lady) for survivorship! My MO actually said to me - 'what sucks about this Peg is that you are now going to have to support all the people who are falling about because YOU have cancer!' I just couldn't go to that support group and see the fear reflected on the "young" survivors. Even though I am really doing well!!!

    Anyway, this group has already helped so very much! Anne, your document is so valuable and very much appreciated!

  • Kattysmith
    Kattysmith Member Posts: 688
    edited November 2016

    Thank you; I just requested a complimentary copy! <3

  • bestbird
    bestbird Member Posts: 232
    edited November 2016

    patchingpeg, Thank you for your feedback about the MBC Guide, and I am so glad to hear that the information about Ibrance and other items therein has been helpful to you! Please feel free to recommend the Guide to others as you deem appropriate!

    As for the support group, it sounds as though people have been relying on you to help them. That is not exactly a comfortable position to find oneself in, especially after a recent diagnosis. Please do not feel obligated to place yourself in a position you do not wish to be in.\

    Wishing you a smooth road ahead!

  • bestbird
    bestbird Member Posts: 232
    edited November 2016

    Kattysmith, the MBC Guide should be in your InBox.

  • bestbird
    bestbird Member Posts: 232
    edited November 2016

    Kattysmith, the MBC Guide should be in your email InBox.

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited December 2016
    Hi Bestbird,

    I just emailed you a request. Meant to do this awhile ago. It's a "Merry Christmas to me!"

    Thanks,
    Sheri
  • Ronnie3001
    Ronnie3001 Member Posts: 155
    edited January 2017
    Hello I would love a copy of the MBC Guide. Please let me know how it is sent out.

    Thanks much,

    Ronnie
  • bestbird
    bestbird Member Posts: 232
    edited January 2017

    Ronnie,

    I'd be happy to forward you a free copy of the MBC Guide! The instructions for requesting it, as descrivbed at the very top of this thread, please follow these 2 simple steps:


    1) Email your request to bestbird@hotmail.com

    2) In the Subject Line of your request, type in the words: MBC Document Request Terms Accepted by <your email address>

    So, for example, if your email address is GotChocolate63@comcast.net then your Subject Line would read: MBC Document Request Terms Accepted by GotChocolate63@comcast.net

    TERMS OF ACCEPTANCE:

    The information in this document was gleaned from books, Internet sources that the author deems reliable, and other metastatic breast cancer (MBC) patients.

    The author is a layperson with absolutely no medical training. She does not advocate any specific treatment(s) or type(s) of therapies listed herein, nor does she bear responsibility for any decisions and/or therapies undertaken by the reader as the result of reading this document. All readers are strongly advised to discuss potential new therapies with their doctor.

    The reader agrees to hold the author blameless for any and all actions taken by the reader as the result of reviewing this document.


  • rgc77
    rgc77 Member Posts: 45
    edited January 2017

    Bestbird, thanks so much for the MBC Guide. It was very helpful in the run-up to meeting my RO last week. Thank you for all the time and effort you put into it, but also your willingness to share it.

  • bestbird
    bestbird Member Posts: 232
    edited January 2017

    rgc77, Thank you for your feedback about the MBC Guide! I'm glad to hear that it was helpful in preparation for your meeting with the Radiation Oncologist, and hope that it helped lead to a satisfactory decision!

  • stagefree
    stagefree Member Posts: 360
    edited July 2017

    Dearest Anne,

    I probably had the copy, can't find it so sent another request :) terrible in archiving I am! Ha ha :))

    Hugs

    Ebru


  • bestbird
    bestbird Member Posts: 232
    edited July 2017

    Ebru, I just sent it to you in response to your email, but received an automatic response that my email could not be delivered because the recipient was "over quota." I've never seen anything like that before.

    Might there be a different email address we might try?

    I'm flummoxed!


  • bestbird
    bestbird Member Posts: 232
    edited August 2017

    Ebru, I've tried sending you the Guide twice again with the same result. That said, I PM'd you a link where you can view it online or download it in .pdf form.

    I hope you are feeling a bit better and that you will enjoy a relaxing weekend!

    Hugs.

  • MamaFelice
    MamaFelice Member Posts: 165
    edited September 2017

    Hi there! May I please request a copy? Thank you so much for putting such together to share!

    With kind thanks!

  • bestbird
    bestbird Member Posts: 232
    edited September 2017

    MamaFelice, I just sent you a Private Message!

  • kachincolor
    kachincolor Member Posts: 62
    edited September 2017

    Bestbird,

    I keep looking but I can't find your instructions regarding updates to your MBC Guide. Have you made any since January 2017? If so, could you remind me how to get the updated copy? I carry your guide around with me all the time!

    Thank you for this great resource!

    Kimberly

  • bestbird
    bestbird Member Posts: 232
    edited September 2017

    Kimberly, you brought up a great question - thank you! I should have provided instructions for "Repeat customers" in my post, and I've since added them as follows:

    For previous recipients who wish to receive an updated version of the MBC Guide, please send an email to bestbird@hotmail.com and write, "Repeat customer" in your email (I love hearing from repeat customers!)!

  • aznkids
    aznkids Member Posts: 1
    edited December 2017

    hello bestbird! i have sent out request to you today with email aznkids@ymail.com, I am requesting the information for my mother.

    hopefully i can get the email soon.

  • bestbird
    bestbird Member Posts: 232
    edited December 2017

    Hi anzkids,

    Your reqest has been safely received, and I will be happy to forward you the Guide when I return home from the San Antonio Breast Cancer Sympodium this weekend!


  • UtahT
    UtahT Member Posts: 1
    edited January 2018

    I would like a copy of the guide. Please let me know how I can receive one.

  • bestbird
    bestbird Member Posts: 232
    edited January 2018

    UtahT, I would be happy to forward you a complimentary copy! (BTW, I assume you live in Utah? I do, too!)

    The instructions for requesting the MBC Guide, which appear at the top of this thread, are as follows:

    For new requestors: follow the simple 2-steps below after reading the TERMS OF ACCEPTANCE:

    Step 1) Email your request to bestbird@hotmail.com

    Step 2) In the Subject Line of your request, type in the words: MBC Document Request Terms Accepted by <your email address>

    For repeat requestors: If you previously received the booklet and want an updated copy, please specify "Repeat Customer" in the Subject Line.

    TERMS OF ACCEPTANCE:

    * I recognize that the information in The Insider's Guide to MBC was gleaned from books and Internet sources that the author deems reliable.

    * I understand that the author is a layperson with absolutely no medical training. She does not advocate any specific treatment(s) or type(s) of MBC therapies, nor does she bear responsibility for any decisions and/or therapies that I take as a result of reading this document.

    * For my own personal benefit, I understand that I must discuss with my doctor any potential therapies cited in this book before undertaking them.

    * I agree to hold the author blameless for any and all actions that I take as the result of reading this document


  • MusicLover
    MusicLover Member Posts: 777
    edited January 2018

    Anne,

    Thank you for sending me a copy of the guide so quickly and for all that you do to support this community.

    Heart

  • Frejen
    Frejen Member Posts: 4
    edited January 2018

    Thank you so much for the book Bestbird!

    Great piece of information.

  • PMikulay
    PMikulay Member Posts: 1
    edited January 2018

    plse send me my free guide

  • bestbird
    bestbird Member Posts: 232
    edited January 2018

    In order to request a copy of the Guide, you will need to follow the instructions at the top of this thread

  • chowdog
    chowdog Member Posts: 190
    edited March 2018

    Bestbird, thank you for all the work you have done!

  • Yaelle
    Yaelle Member Posts: 38
    edited March 2018

    Bestbird, thank you for the amazing work !

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