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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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May 15, 2015 09:46PM LindaE54 wrote:


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

Linda - dx at 54. Decision to stop all treatments on 9 Jan 2018 Dx 11/26/2013, IDC, Left, 1cm, Stage IV, metastasized to bone/liver/other, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 12/18/2013 External: Bone Hormonal Therapy 12/29/2013 Femara (letrozole) Hormonal Therapy 5/27/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/28/2014 External: Bone Radiation Therapy 8/27/2014 External: Bone Hormonal Therapy 9/24/2014 Femara (letrozole) Radiation Therapy 12/13/2014 External: Bone Hormonal Therapy 2/16/2017 Faslodex (fulvestrant) Chemotherapy 5/14/2017 Taxol (paclitaxel) Radiation Therapy 6/4/2017 External: Bone Chemotherapy 10/2/2017 Ellence (epirubicin) Chemotherapy 10/22/2017 CEF Chemotherapy 12/27/2017 Halaven (eribulin)
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May 16, 2015 01:25AM Springlakegirl wrote:

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

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Jun 7, 2015 11:06PM Moderators wrote:

Well, well done! You are amazing!

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jun 7, 2015 11:40PM - edited Jun 8, 2015 12:04AM by Bestbird

Thank you!  The tally now stands at 521!

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Jun 8, 2015 01:25AM ibcmets wrote:

Thank you Anne,

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

Terri

6/2009 stage IV diagnosis w bone mets ,Xgeva , 2015 brain mets, liver metastasis
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Jun 8, 2015 11:13AM Xavo wrote:

Thank you Anne!

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

Dx 12/2002, IDC, Left, 4cm, Stage IIB, Grade 3, 5/12 nodes, ER-/PR-, HER2- Surgery 1/2/2003 Mastectomy: Left Dx 2/27/2015, Stage IV, ER+/PR+, HER2- Hormonal Therapy 2/28/2015 Femara (letrozole) Chemotherapy AC Radiation Therapy Chest wall
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Jun 8, 2015 11:56PM Bestbird wrote:

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!

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Jun 9, 2015 06:51PM BionicBunny wrote:

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.

Joshua 1:9. Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged for the Lord your God will be with you wherever you go.
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Jun 14, 2015 07:28AM nickiemc wrote:

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

Dx 12/6/2012, IDC, Right, 4cm, Stage IV, Grade 2, 3/12 nodes, ER+/PR-, HER2- Surgery 1/20/2013 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Free TRAM flap Chemotherapy 6/6/2015 Xeloda (capecitabine) Targeted Therapy Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External: Bone
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Jun 14, 2015 10:43AM azul wrote:

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

Lumpectomy 10/7/10 (narrow margins). BMX with TEs 10/27/10. BRCA neg. Exchange surgery 3/3/11. Ooph 5/12. Dx 9/24/2010, DCIS, 3cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Jun 14, 2015 11:14AM Bestbird wrote:

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!

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Jun 14, 2015 03:58PM jjski62 wrote:

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

Dx 10/2014, Stage IV, Grade 2, mets, ER+/PR-, HER2- Hormonal Therapy 10/23/2014 Arimidex (anastrozole) Radiation Therapy 12/18/2014 Bone Hormonal Therapy 4/12/2015 Femara (letrozole) Targeted Therapy 5/17/2015 Ibrance (palbociclib)
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Jun 23, 2015 11:37AM Lynnwood1960 wrote:

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

Dx 4/6/2015, ILC, Right, 3cm, Stage IV, Grade 2, 0/12 nodes, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib)
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Jul 6, 2015 05:51PM Bestbird wrote:

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!

 

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Jul 11, 2015 01:04PM surfdreams wrote:

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

Mets to lungs, pelvis, spine, brain Dx 3/2009, IDC, Right, 1cm, Stage IIB, Grade 3, 1/12 nodes, ER-/PR-, HER2- Radiation Therapy 9/1/2009 External: Breast, Bone, Brain Dx 10/2011, Stage IV, metastasized to lungs, Grade 3, PR-, HER2- Chemotherapy 11/24/2011 Abraxane (albumin-bound or nab-paclitaxel) Dx 2/2013, Stage IV, metastasized to bone, Grade 3, ER-/PR-, HER2- Chemotherapy 2/27/2013 Abraxane (albumin-bound or nab-paclitaxel), Carboplatin (Paraplatin), Gemzar (gemcitabine) Dx 5/2015, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2-
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Jul 13, 2015 04:18PM Bestbird wrote:

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!

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Jul 15, 2015 02:43AM 3littlegirls wrote:

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.


Michelle Dx 4/19/2010, IDC, 6cm+, Stage IV, Grade 3, 5/18 nodes, mets, ER+/PR+, HER2-
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Jul 23, 2015 09:18PM Rosieo wrote:

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

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Jul 24, 2015 12:01AM Bestbird wrote:

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!

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Jul 25, 2015 02:47PM PattyPeppermint wrote:

thank best bird !

To God be the glory! Live, laugh, love... Life is way too short. Dx 6/2013, Stage IV, ER+/PR+, HER2- Hormonal Therapy 6/29/2013 Femara (letrozole) Radiation Therapy 7/5/2013 Bone Hormonal Therapy 8/1/2015 Faslodex (fulvestrant) Targeted Therapy 8/1/2015 Ibrance (palbociclib) Chemotherapy 7/1/2016 Xeloda (capecitabine)
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Sep 1, 2015 08:28PM Judi1952 wrote:

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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Sep 1, 2015 09:20PM Bestbird wrote:

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

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Oct 9, 2015 04:17PM Lindalou wrote:

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

Linda Dx 11/1/2007, ILC, Left, Stage IIB, Grade 3, ER+/PR+, HER2- Dx 8/2009, Stage IV, metastasized to bone Dx 5/13/2014 Targeted Therapy 4/21/2017 Ibrance (palbociclib) Chemotherapy 10/2/2017 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 10/23/2017 Xeloda (capecitabine) Radiation Therapy External: Bone Radiation Therapy External: Bone Surgery Mastectomy: Left, Right Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole) Radiation Therapy External: Bone Radiation Therapy Bone
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Oct 9, 2015 04:26PM mikarae wrote:

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!

Stage lV. Bone mets at time of diagnoses. Currently, bone mets resolved and one active supra-clavicle node. Surgery 1/14/2014 Lymph node removal: Left, Underarm/Axillary Surgery 1/15/2014 Mastectomy: Left, Right Dx 2/19/2014, IDC, Left, 2cm, Stage IV, Grade 3, 18/18 nodes, mets, ER-/PR-, HER2+ Targeted Therapy 3/3/2014 Herceptin (trastuzumab) Targeted Therapy 3/3/2014 Perjeta (pertuzumab) Chemotherapy 3/3/2014 Taxotere (docetaxel)
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Oct 9, 2015 06:18PM Bestbird wrote:

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!

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Oct 9, 2015 06:20PM Bestbird wrote:

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

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Oct 26, 2015 04:21PM Bestbird wrote:

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!

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Nov 13, 2015 07:41PM stagefree wrote:

wow! You rock !!!!!!

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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Nov 15, 2015 06:13PM RonnieKay wrote:

Hope you're having a marvelous time :-)

Dx 6/1/2009, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2+ Surgery 6/23/2009 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 8/10/2009 Breast Hormonal Therapy 1/6/2010 Femara (letrozole) Dx 6/9/2011, IDC, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2+ Surgery 6/30/2011 Lymph node removal: Left; Mastectomy: Left; Reconstruction (left): Tissue expander placement Surgery 6/28/2012 Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Dx 12/21/2012, IDC, 6cm+, Stage IV, 0/0 nodes, mets, ER+/PR+, HER2+
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Nov 30, 2015 10:12PM lindabrit wrote:

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.

Dx 1/31/2012, IDC, 5cm, Stage IIIC, Grade 3, 1/12 nodes, ER-/PR-, HER2- Chemotherapy 3/9/2012 AC + T (Taxol) Surgery 8/18/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 9/26/2012 Breast, Lymph nodes Hormonal Therapy 11/19/2012 Femara (letrozole)

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