Comprehensive Book About MBC

Bestbird

Greetings,

When contending with an initial diagnosis, treatment change, or side effect, it can be quite difficult to obtain current science-based information.When I was diagnosed with MBC in 2011, I began researching the disease and its treatments and shared my notes with other patients.In 2015 I organized everything into a .pdf entitled "The Insider's Guide to Metastatic Breast Cancer" that I continually update and have forwarded free of charge to more than 3,100 patients and caregivers worldwide over the past 4 years.Those interested in receiving a copy can email me at bestbird@hotmail.com

I'm delighted to say that "The Insider's Guide to Metastatic Breast Cancer" is now offered in paperback and eBook format on Amazon at: https://www.amazon.com/Insiders-Guide-Metastatic-Breast-Cancer/dp/179586060X/ref=sr_1_fkmrnull_1?crid=2EL3W64I1UXA0&keywords=the+insider%27s+guide+to+metastatic+breast+cancer&qid=1550509998&s=gateway&sprefix=insiders+guide+to+me%2Caps%2C684&sr=8-1-fkmrnull

The Guide contains information that many patients may not be aware of, for example:

• 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 has been prescribed as treatment, patients may first want to speak with their medical team 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.

Since 2015, the book has elicited 19 pages of feedback from readers, including:

"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."

Tina2

You go, Bestbird! Brava!

Tina

ABeautifulSunset

Mazel Tov!

And even tho I have a free digital copy, I will buy one on Amazon, in support of my BCO sister.

Sunset

Bestbird

Tina and Sunset, Thank you so much! I hadn't realized how much would be involved in self-publishing! And I'm happy to continually offer the .pdf version to requestors free of charge, as I hope that every MBC patient will have it available!

As long as I'm able, I'll keep all 3 versions (.pdf, paperback, and eBook) up to date.

Good wishes!

Zillsnot4me

You go girl! You should be so proud. My gma self published long ago and far away. Lots of work. You are a blessing to us all. Thank you so much for sharing.

Heidihill

Congrats on the Amazon launch! You are the best!

Birchbark26

congratulations

I've alread found something useful from your sample. My daughter is 32 with stage IV HER2+ so the SOPHIA study is of interest to me. I will buy the Kindle edition to support you.

Thank you very much!

Bestbird

Birchbark26, I am so glad you were able to leverage information from the intro, and hope you will find much more in the book that will be of help for your daughter!

Bestbird

The book is now "Nr. 1 in New Oncology Releases" on Amazon!

A big "Thank You" to everyone for your support!!!!

MuddlingThrough

I have your download, for which I am very thankful, but I'm going to buy a copy on Amazon right now. Thank you for all you have done and continue to do for all of us with MBC!

Edited to add: Ordered and it's on the way.

MargaritaMS

Thank you so much for all your efforts, Bestbird! Your guide is so helpful - it’s really great that more people will now benefit from it

Micmel

congratulations you amazing woman. Thank you for being you and Sharing this information with all of those sisters. It’s a really awesome thing to know now everyone can benefit from this information that you put your heart and soul into. You go ! Represent!!

Bestbird

Thank you so much for your support and kind words!

I'm delighted that the information is now more widely available, and am glad to be able to continue to offer it free of charge in .pdf format.

What matters most is that science-based information is made available to MBC patients so that we can become our own best advocates with regard to treatments and side effect mitigation. We are each vital links in this chain.

Cure-ious

Fantastic job to make such an amazing compilation, keep it updated, and now self-published! No-one would even contemplate the need for such a book had they not walked this path where we truly have to find our own way. Thanks for all you do, BestBird!!!!

santabarbarian

Bestbird I am humbled by the gift you have provided to so many at a time you could have focused only on yourself. What an example for the rest of us. Thank you!!

DivineMrsM

Oh my gosh, Bestbird! Congratulations!!! I'm so very proud of you! I'm so appreciative of your dedication and thoroughness in researching the subject matter as well as your desire to make the information available to others who really need it. One thing about the guide that resonates with me is it's written by you as one who herself is dealing with metastatic breast cancer. I think that is one reason you are so thorough, you have true insight as to the kind of information those of us with mbc seek. You understand on the deepest level. I also like that there's no sensationalism to it. It's not offering a miraculous cure or professing to have secret answers no one else has or dramatic solutions that would be unattainable for many of us, like say, sell all your possessions and go live on a mountaintop. You offer real, invaluable and comprehensive guidance.

I love how you put it: “What matters most is that science-based information is made available to MBC patients so that we can become our own best advocates with regard to treatments and side effect mitigation. We are each vital links in this chain"

.

candy-678

Ordered-check.  Thanks Bestbird!!!

Bestbird

Your kind words mean more to me I can adequately express! It is so thoughtful of you to take the time to share your opinion, and I'm delighted to hear that you find the resource helpful!

I initially compiled the manuscript in .pdf format in 2015 and have forwarded more than 3,100 complimentary copies on-request to patients and caregivers worldwide. My hope is that the Amazon books will reach a broader audience. As long as I am able, I will continue to update the .pdf, the eBook, and the paperback as new research unfolds.

Over the years readers have responded with an unexpectedly large amount of positive feedback. When deciding whether to purchase a book on Amazon, people often look for reviews from others to help them make a decision. So if you might consider incorporating your thoughts into a review on Amazon, it may help other patients who are deliberating whether to obtain the resource. That said, please realize that there is absolutely no obligation to do so!

All are welcome to email me any time for a complimentary version of the .pdf, and please accept my best wishes for years and years of the best possible health!

LoveFromPhilly

Bestbird, thank you so much for this! I have already started sharing the Amazon link to my medical colleagues who work with oncology patients. I think it could benefit SO many people. I am also going to share with my MO team! They need it too!

Question: Do you know by any chance what are the statistics currently for how many people are exceptional responders and outliers with MBC? I know you did that survey a couple years back...and what I can currently find online is that it is somewhere between 8-10% of people diagnosed with MBC become exceptional responders. Is this still true in 2019?

I am so wishing for myself to be one of those exciting statistics. It is difficult for me to peer much further into my future than a couple years right now. It just gets fuzzy.

Thanks and love

Brenda

Bestbird

I'm delighted to hear you are pleased with the Guide and that you're sharing it! If you might consider posting your thoughts in a review on Amazon, that will help other mbc patients decide whether it's worth procuring!

You ask a great question about MBC Exceptional Survivors and Exceptional Responders. There are currently 2 studies I'm aware of: One is Dr. Burkard's Outliers Study, and the other is Dr. Wagle's MBC Project, which invites anyone with MBC to join and will study patient responses.

I'm hoping there will be many more patients in both categories as treatments improve.

Best wishes!

Stllivin

I'm waiting for my copy to come today. Thank you for working tirelessly to keep us updated and informed. 😊

Suzy.

Bestbird

Suzy, I hope the book was safely received and that you'll find it useful!

Stllivin

Bestbird, I received yesterday. I’m thrilled to have it. Now, maybe I’ll convince my family I really do know what I’m talking about - thanks to your research - of course. Thank you again for all your continued work to keep us all updated.

Suzy

Bestbird

Suzy, I'm delighted that the book was safely received! Now not only will you be able to convince your family that you "know your stuff," but also your entire medical team!

If you might want to share your thoughts with other patients who are considering the book, please feel free to do so at https://www.amazon.com/Insiders-Guide-Metastatic-B...

Patients' voices are important and helpful!

With best wishes.

Anne