Mom stage 4 with BRAF V600E got drastically worse even after taking dabrafenib + tranatenib

[VMim]

My mom was diagnosed on April 22nd with stage4 non small cell lung cancer. After completing the next gen sequencing study we were fortunate to find the BRAF v600E mutation. At this point we only saw tumor in her left lungs (huge 10.5 cm) and some small specs on the liver and adrenal glands. On May 22nd we started her on dabrafenib and tramatenib as a first line of treatment. Her cough worsened and just today when we did her first pet scan post starting treatment we actually see the tumor has grown and also spread to more places including her right adrenal gland and bone marrow. All her doctors are confused and I am heart broken!! 

[LouT]

VMim,

I'm sorry to hear about your mom's condition and I pray that things will improve.  I personally do not have any knowledge of this mutation, and can't find it in our forum which cover such mutations (which can be found here).  But we have a large and varied family online and hopefully someone will be able to provide some input for you.  Regardless of that input hearing progression while under treatment is surely something to be concerned about so I understand your deep concern.

Lou

PS:  With some additional searching I did find a thread on BRAF and it is on this page.  I'm not sure it is that helpful, but may offer some insight.

[LouT]

VMim,

I just learned that Lungevity announced a new page that covers rare mutations and fusions and you may find some useful information there, it can be found here.  Good luck.

Lou