When dealing 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 free .pdf copy may email me at email@example.com
The Guide contains information that many patients may not be aware of, for example:
NICE Guidelines indicate that patients with Estrogen Receptor positive MBC are eligible for Ibrance (Palbociclib) in combination with an aromatase inhibitor as first-line therapy, or in combination with Faslodex as second-line therapy. Kisqali in combination with an aromatase inhibitor has been approved for ER positive MBC patients, and it has also been approved in combination with Faslodex for postmenopausal ER positive patients.
BRCA positive, HER2 negative MBC patients in the US have the option of taking the FDA-approved PARP inhibitors Olaparib or Talazoparib for their disease. Hopefully that will be true in the UK in the near future.
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.
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 positive feedback from readers, including:
“Your Guide was a godsend for me when I was too sick and worn down to have ever initiated researching this on my own. Thank you so much for all you have done.”
“I can’t stop reading it! So much valuable information in one place.”
“You note a promising drug that I will mention to my doctor. This is an incredible contribution to the community of women living with various forms of breast cancer. Kudos to you for your professionalism of the writing and for your kindness in sharing.”