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Take Away from my First Research Conference 2019


1st people are living longer with Mets. This is a good thing!


However, advances in science with brain mets and leptomeningeal


mets are lagging.


15-20 percent of people with mbc get brain mets there is an even higher risk up to 30-50% with Triple negative and HER2 positive BC.


Currently, there are no drugs approved for brain mets. Why? The issues are first, most drugs can't cross the blood brain barrier. Second, patients with brain mets are excluded from clinical trials and finally, there is a lack of research data for brain mets.



As a consumer and patient advocate this lead me to ask why are Brain MRI not standard of care for these two patient populations? AND how do we switch the narrative to allow patients with brain mets in to clinical trials?  AND How do we encourage more researchers to study brain mets as well as encouraging financial backers such as METAvivor to offer grants and support researchers that are investigating Brain mets.


Other thoughts from the conference



1. Check out the Storm Rider Network if you are interested in clinical trials. Extremely comprehensive for finding clinical trials as well as has many other resources for breast cancer.


2.  Immunotherapy is a game changer. In a nut shell, breast cancer tumors are consider "cold tumors" and we now have the ability to change the tumor to "on" so it becomes "hot" this allow it to respond to immunotherapy. In other words it helps to reprogram cells to increase the response to the standard of care.


3.  Foundation One testing is imperative. This goes beyond the genetic testing for BRAC1 and BRAC2 genes but is genomic testing to see if there are more markers that may lead to other medication to use for your cancer tumors.  It is important to do this testing when first diagnosed and ANYTIME you have progression. Unfortunately, cancer is smart and tumors can mutate.


4. Mammograms are not great. Especially for dense breast and inflammatory breast cancer. You need to advocate for yourself to get Breast MRIs.


5.  If you have MBC consider using the MBC connect app. This is a patient powdered, research driven free app that can assist in matching with clinical trials as well as a place to store your medical data and side effects that gives tips to improve quality of life.


6.  Precision medicine is upcoming. This is next generation sequencing. Currently, it is expensive but with the molecular study of individual tumors we can better match for clinical trials and select drugs for off label use.


7. New approach to monitor MBC is liquid biopsy via serial samples of blood to monitor the genetic evolution and to see the burden of disease by checking for circulating tumor cell.


7. New clinical trials

Triple Negative- PDL-1 inhibitors and androgen positive receptors

Estrogen positive- PIKCA3 and CDK4/6 inhibitors, ESRI

HER2+ -New TKIs: neratinib, which can cross the blood brain barrier and Tucatinib


8. There are some biosimilars that are coming for HER2 positive breast cancer and this will expand access around the world.



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