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Bestbird
Bestbird Member Posts: 2,818
edited September 2021 in Stage IV/Metastatic Breast Cancer ONLY

If you are newly diagnosed with MBC, facing a treatment change, or contending with difficult side effects, then you may want to look at "The Insider's Guide to Metastatic Breast Cancer," which provides science-based information about approved and emerging therapies, cutting edge research, symptom mitigation, and more.  It is the only comprehensive, up-to-date, patient-oriented MBC book on the market today (the last similar publication was in 1998).

Learn more about "The Insider's Guide to Metastatic Breast Cancer" at: https://www.insidersguidembc.com/   You can order the paperback or eBook on Amazon, or download a complimentary .pdf via the ORDER page.

The Guide contains information that many patients may not be aware of, such as:

  • Hormone Receptor (HR) positive, HER2 negative premenopausal patients are now eligible to take a combination of Kisqali (Ribociclib) which is a CDK4/6 inhibitor, along with an Aromatase Inhibitor (AI) as initial endocrine-based therapy.

  • BRCA positive, HER2 negative MBC patients have the option of taking the FDA-approved PARP inhibitors Olaparib or Talazoparib for their disease.

  • Heavily pre-treated HER2+ MBC patients may be interested to hear that a Phase 3 study called "SOPHIA" showed that the experimental drug Margetuximab in combination with chemotherapy reduced the risk of disease progression or death by 24% compared with patients taking Herceptin and chemotherapy.

  • Patients experiencing fatigue, anxiety, joint pain, and/or other quality of life issues can significantly be helped by acupuncture treatments based upon the results of scientific studies.

  • If Xeloda or 5-FU have been prescribed as treatment, patients may first want to speak with their medical teams about getting tested for specific mutations in the DPD (dihydropyrimidine dehydrogenase) gene that could cause a severely toxic or potentially life-threatening reaction.Approximately 3% to 5% of the population has some degree of DPD deficiency that can put them at risk when taking these drugs.

Readers' Comments:

"Thank you very much for the document! I can't stop reading it! So much valuable information in one place."

"It is a totally comprehensive collection of every and all things pertinent to MBC. It is informative and professionally done.My profession was in nursing and I have to say I am very impressed."

"I'm newly diagnosed with MBC, and your Guide has saved me a tremendous amount of research time.What a gift to have this resource during such a confusing and difficult time."

With good wishes!

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited May 2015


    WOW Bestbird, that's awesome!  I was one of the first who received your document.  I refer to it every time I have a question (which happens often!)  Your document is precious to me.  I cannot thank you enough for all the hard work you put into this and to share all this knowledge with us.  YOU are precious.

    Again, thank you.  Linda

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  • Springlakegirl
    Springlakegirl Member Posts: 216
    edited May 2015

    That's amazing! I would love to read it! I will be sending you an email! :)

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2015

    Well, well done! You are amazing!

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited June 2015

    Thank you!  The tally now stands at 521!

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited June 2015

    Thank you Anne,

    I really appreciated getting your copy the last time you sent it. You have a world of information.

    Terri

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  • Xavo
    Xavo Member Posts: 364
    edited June 2015

    Thank you Anne!

    Just received a copy, already feel in a position of being well informed. Thank you again for your tremendous generosity!

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited June 2015

    Linda, Terri and Xavo, I am so happy to hear that the document is helpful!  Hopefully it will be pivotal in enabling patients to discuss multiple options with our medical teams with a considerable degree of confidence!  If we succeed in that objective, then we have done ourselves a tremendous service!

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  • BionicBunny
    BionicBunny Member Posts: 146
    edited June 2015

    As many others have said, thank you! I have referred to your document several times since receiving it, and as a result talked to my doctor about getting more information about the ER status of the tumor that was removed from my hip. He had the tissue restained, which showed a 3% ER positive result. The original pathology report had simply stated ER negative. When you have triple negative, even a weak positive result is a good thing.

    I appreciate your time and diligence in sharing information through your document and posts. Thank you for all your hard work.

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  • nickiemc
    nickiemc Member Posts: 2
    edited June 2015

    Thank you so much for my copy. Very informative and I've learnt so much from reading it, I'm positive it will help me choose future treatments xx

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  • azul115817
    azul115817 Member Posts: 98
    edited June 2015

    It's a great resource. Thanks so much for creating it and then being willing to distribute it so readily!

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited June 2015

    BionicBunny, it is wonderful to hear that as a result of reading the Guide you had your tumor re-tested for hormonal sensitivity, and that it came back positive!  And as you mentioned, with TNBC, even a weak positive result is a good thing which should enable you to see whether hormonal therapy may work well for you, which I hope it does! 

    nickiemc and azul, it's great to hear that you're finding the document helpful!

    As of today, June 14, a total of 556 copies of the Guide have been sent, and I'm looking forward to fulfilling many more requests!

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  • jjski62
    jjski62 Member Posts: 97
    edited June 2015

    I wanted to also thank you so much for the copy. It's such a comprehensive resource and so up-to-date. I'm currently on Ibrance and you already have it included. I feel armed and ready to have meaningful discussions with my treatment team.

    Joanne

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  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,284
    edited June 2015

    Just sent an email requesting mine. Looking forward to reading it

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited July 2015

    Joanne, I'm delighted to hear that as a result of reading the MBC Guide, you feel more empowered to engage in treatment related discussions with your medical team!

    And as of today, July 6. I've just fulfilled the 620th request for the booklet!

     

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  • surfdreams
    surfdreams Member Posts: 1,132
    edited July 2015

    Thanks for my copy, Bestbird!!! Very informative. So glad you're sharing all your work with us all!

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited July 2015

    Surfdreams, I am glad you are finding the Guide informative!

    As of today I've sent nearly 650 copies!

    I've been wondering whether the title of this post should be changed to something similar to "Request A Free MBC Therapies Guide!" or something similar so that it is more descriptive. Any feedback would be appreciated!

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  • 3littlegirls
    3littlegirls Member Posts: 853
    edited July 2015

    I just sent you a request. :) You have been such a great support to me and so many. Feel blessed to have you on our side. Hope you are doing well.


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  • Rosieo
    Rosieo Member Posts: 262
    edited July 2015

    I too just sent a request. Can't wait to get it.

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited July 2015

    All requests to date for the MBC Guide have been fulfilled, and I hope there will be many more to come. The more that patients are aware of their options, the more comfortable and empowered they'll feel when discussing them with their medical teams!

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  • PattyPeppermint
    PattyPeppermint Member Posts: 11,162
    edited July 2015

    thank best bird !

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  • Judi1952
    Judi1952 Member Posts: 25
    edited September 2015

    Hi Best Bird,

    I live in SLC, also. I would love a copy of your guide. I am going to Huntsman Cancer Hospital, seeing Dr. Saundra Buys for treatment. Have a colonoscopy next week after my latest cat scan showed some abnormalities in my colon.

    Thanks,

    Judi

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited September 2015

    Hi Judi! I'd be happy to send you a copy of the Guide! I just sent you a PM with the instructions pasted.

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  • Lindalou
    Lindalou Member Posts: 647
    edited October 2015

    Hi

    I see you on Stage IV thread all the time. Even though I'm 6 years out, my friend was just diagnosed with Stage IV and I would like to give her your guide.

    Thanks,

    Linda

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  • mikarae
    mikarae Member Posts: 163
    edited October 2015

    Thank you Best Bird. Your guide was not only helpful to me; it was helpful to my family. You are a great asset to the MBC community!

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited October 2015

    Linda, I am sorry to hear about your friend and would be glad to forward her the Guide. Since I'm a layperson, I'm asking that people who want a copy of the Guide agree to the terms at the top of this page and request the document from me directly as follows:

    1) Email the request to bestbird@hotmail.com
    2) In the Subject Line, type in the words: MBC Document Request Terms Accepted by <the recipient's email address>

    This also helps me keep track of the number of copies sent, as the more copies sent, the more likely I'll be to find an online "home" for it on a mbc website!

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited October 2015

    mikarae, It's great to hear that you and your family found the MBC Guide helpful! Thank you for letting me know.

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited October 2015

    Just a quick reminder that I will be out of town with no Internet access for quite a while, so anyone wishing to request my free MBC Guide is welcome to do so up until Nov.7. Otherwise, requests will be filled around Xmas!

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  • stagefree
    stagefree Member Posts: 2,780
    edited November 2015

    wow! You rock !!!!!!

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  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited November 2015

    Hope you're having a marvelous time :-)

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  • lindabrit
    lindabrit Member Posts: 6
    edited December 2015

    Thank you, I am going to my email to send my request, I look forward to reading it, thank you so much, it is very hard getting information about MBC.

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