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Topic: Request a Free MBC Guide about Treatments, SE's, and more..."

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: May 15, 2015 08:54PM - edited Apr 17, 2019 03:17PM by Bestbird

Bestbird wrote:

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!

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Oct 14, 2016 08:48PM Bestbird wrote:

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

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Nov 1, 2016 11:10PM kachincolor wrote:

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

Dx 1/14/2015, IDC, Left, 1cm, Stage IB, Grade 3, 1/2 nodes, ER+/PR-, HER2- (FISH) Surgery 1/27/2015 Lumpectomy: Left Chemotherapy 3/6/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 6/1/2015 Whole-breast: Breast Hormonal Therapy 9/1/2015 Femara (letrozole) Dx 8/24/2016, IDC, Left, 1cm, Stage IV, metastasized to bone/liver, Grade 3, 1/2 nodes, ER+/PR-, HER2- Chemotherapy 9/1/2016 Xeloda (capecitabine) Targeted Therapy 3/4/2017 Ibrance (palbociclib) Hormonal Therapy 3/4/2017 Faslodex (fulvestrant) Chemotherapy 8/30/2017 Doxil (doxorubicin)
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Nov 2, 2016 10:32AM Bestbird wrote:

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!

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Nov 14, 2016 01:36PM - edited Nov 14, 2016 04:02PM by patchingpeg

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!

Dx 5/1992, ILC/IDC, Left, 1cm, Stage IIIA, Grade 3, 1/20 nodes, ER+/PR- Dx 1/1993, ILC/IDC, Left Dx 9/2016, ILC, Left, 1cm, Stage IV, metastasized to other, 2/2 nodes, ER+/PR-, HER2- Surgery Mastectomy: Left Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Ibrance (palbociclib) Chemotherapy FAC Radiation Therapy External: Chest wall Surgery Prophylactic mastectomy: Right
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Nov 14, 2016 05:38PM Kattysmith wrote:

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

First diagnosed borderline Stage 2 IDC, left breast in 2003. No problems until a surprise (!) Stage IV recurrence in 2015! In addition to treatments listed below, I started monthly injections of Xgeva for bone support in July 2016. Dx 10/23/2015, Left, Stage IV, metastasized to other, Grade 3, 0/3 nodes, ER+, HER2- Chemotherapy 11/4/2015 AC Hormonal Therapy 2/5/2016 Femara (letrozole) Targeted Therapy 2/5/2016 Ibrance (palbociclib) Immunotherapy 12/23/2018 Hormonal Therapy Faslodex (fulvestrant)
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Nov 14, 2016 07:22PM Bestbird wrote:

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!

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Nov 14, 2016 07:24PM - edited Nov 14, 2016 07:24PM by Bestbird

This Post was deleted by Bestbird.
Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Nov 14, 2016 07:24PM Bestbird wrote:

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

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Dec 15, 2016 05:49PM Southernsurvivor wrote:

Hi Bestbird,

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

Thanks, Sheri
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Jan 12, 2017 02:45PM Ronnie3001 wrote:

Hello I would love a copy of the MBC Guide. Please let me know how it is sent out.

Thanks much,

Ronnie
I am the daughter of a great king. He is my father and my God. He is with me, always at my side, guiding and protecting me. I do not fear because I am his. Dx 1/27/2008, IDC: Tubular, Left, 1cm, Stage IB, ER+/PR+, HER2- Dx 8/29/2016, DCIS, Left, 1cm, Stage 0, Grade 1, ER+/PR+, HER2- Hormonal Therapy 9/6/2016 Arimidex (anastrozole) Radiation Therapy External: Bone
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Jan 12, 2017 03:53PM Bestbird wrote:

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.


Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Jan 15, 2017 03:11PM rgc77 wrote:

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.

Dx 7/31/2014, IDC, Right, 1cm, Stage IA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 9/5/2014 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 10/14/2014 AC + T (Taxol) Surgery 4/6/2015 Prophylactic ovary removal Dx 11/30/2016, IDC, Right, Stage IV, metastasized to brain/bone/lungs/other, Grade 3, ER-/PR-, HER2- Chemotherapy 12/15/2016 Xeloda (capecitabine) Radiation Therapy 1/23/2017 External: Brain Dx 2/6/2017, IDC, Right, Stage IV, metastasized to liver, Grade 3, ER-/PR-, HER2- Chemotherapy 3/1/2017 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 4/5/2017 Gemzar (gemcitabine) Radiation Therapy 5/31/2017 External: Brain
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Jan 15, 2017 04:57PM Bestbird wrote:

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!

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Jul 29, 2017 10:47PM stagefree wrote:

Dearest Anne,

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

Hugs

Ebru


Dx 4/9/2012, IDC, Stage IV, Grade 1, mets, ER+/PR-, HER2- Chemotherapy 4/11/2012 Xeloda (capecitabine) Hormonal Therapy 8/24/2012 Hormonal Therapy 6/8/2016 Arimidex (anastrozole), Zoladex (goserelin) Chemotherapy 6/8/2016 Cytoxan (cyclophosphamide), Xeloda (capecitabine)
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Jul 29, 2017 11:17PM Bestbird wrote:

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!


Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Aug 4, 2017 01:19PM Bestbird wrote:

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.

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Sep 17, 2017 04:30PM MamaFelice wrote:

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

With kind thanks!

Dx 5/10/2017, IDC, Right, 2cm, Stage IIB, Grade 3, 2/3 nodes, ER+/PR+, HER2- Surgery 5/25/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 9/4/2017 Mastectomy: Right; Prophylactic mastectomy: Left Dx 9/13/2017, IDC, Right, 5cm, Stage IIIB, Grade 3, 10/11 nodes, ER+/PR+, HER2- Chemotherapy 10/17/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 3/2/2018 Prophylactic ovary removal Hormonal Therapy 3/15/2018 Radiation Therapy Lymph nodes
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Sep 17, 2017 04:47PM Bestbird wrote:

MamaFelice, I just sent you a Private Message!

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Sep 18, 2017 04:05PM kachincolor wrote:

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

Dx 1/14/2015, IDC, Left, 1cm, Stage IB, Grade 3, 1/2 nodes, ER+/PR-, HER2- (FISH) Surgery 1/27/2015 Lumpectomy: Left Chemotherapy 3/6/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 6/1/2015 Whole-breast: Breast Hormonal Therapy 9/1/2015 Femara (letrozole) Dx 8/24/2016, IDC, Left, 1cm, Stage IV, metastasized to bone/liver, Grade 3, 1/2 nodes, ER+/PR-, HER2- Chemotherapy 9/1/2016 Xeloda (capecitabine) Targeted Therapy 3/4/2017 Ibrance (palbociclib) Hormonal Therapy 3/4/2017 Faslodex (fulvestrant) Chemotherapy 8/30/2017 Doxil (doxorubicin)
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Sep 18, 2017 08:09PM - edited Sep 18, 2017 08:16PM by Bestbird

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!)!

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Dec 6, 2017 07:28PM - edited Dec 6, 2017 07:28PM by aznkids

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.

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Dec 6, 2017 08:20PM Bestbird wrote:

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!


Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Jan 2, 2018 10:44PM UtahT wrote:

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

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Jan 3, 2018 04:08PM Bestbird wrote:

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


Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Jan 14, 2018 12:25PM MusicLover wrote:

Anne,

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

Heart

As per PET scan, 3 or 4 nodules in the right breast, 2 of which were actually in the middle of my chest, the other 2 were side by side in the breast. Also DCIS in the left breast. Dx 9/23/2013, IDC, Right, 2cm, Stage IV, Grade 2, 1/0 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 10/9/2013 Femara (letrozole)
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Jan 18, 2018 03:53PM Frejen wrote:

Thank you so much for the book Bestbird!

Great piece of information.

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Jan 31, 2018 03:28PM PMikulay wrote:

plse send me my free guide

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Jan 31, 2018 03:38PM Bestbird wrote:

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

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Mar 3, 2018 12:18AM Chowdog wrote:

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

Dx 6/2007, IDC, Right, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/2/2007 Mastectomy: Left, Right Chemotherapy 8/15/2007 AC + T (Taxol) Hormonal Therapy 1/10/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Dx 2/12/2018, IDC, Stage IV, metastasized to brain/bone/lungs, ER+/PR+, HER2- Hormonal Therapy 2/12/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 3/19/2018 External: Brain Targeted Therapy 4/9/2018 Ibrance (palbociclib) Hormonal Therapy 4/9/2018 Femara (letrozole), Zoladex (goserelin)
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Mar 3, 2018 02:37PM Yaelle wrote:

Bestbird, thank you for the amazing work !

Vivre ce n'est pas attendre que l'orage passe, c'est apprendre à danser sous la pluie. Dx 4/17/2015, IDC, Left, 6cm+, Stage IIA, Grade 3, 2/8 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 5/14/2015 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel) Surgery 11/17/2015 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 12/26/2015 Whole-breast: Breast Hormonal Therapy 3/3/2016 Femara (letrozole) Dx 10/27/2016, IDC, Left, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+, HER2- (FISH) Surgery 11/30/2016 Radiation Therapy 12/21/2016 External Hormonal Therapy 2/13/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 6/12/2017 Afinitor (everolimus) Hormonal Therapy 11/8/2017 Faslodex (fulvestrant) Targeted Therapy 12/16/2017 Ibrance (palbociclib) Chemotherapy 3/27/2018 Xeloda (capecitabine) Dx 5/26/2018, IDC, Both breasts, Stage IV, metastasized to other, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 6/4/2018 Halaven (eribulin) Chemotherapy 10/28/2018 Other Radiation Therapy 10/28/2018 Breast, Lymph nodes, Chest wall Chemotherapy 4/2/2019 Carboplatin (Paraplatin) Immunotherapy 6/18/2019

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