I am very sad to tell you that Jenna passed away over the weekend at the age of 20.
She responded beautifully to the BRAF/MEK combo. We could watch the sub-qs shrink and disappear. The internal mets were reduced to about half the size by her first CT scan. She was feeling so much better, but starting to get some headaches. An MRI was suspicious for leptomeningeal mets, but not conclusive, and an LP came back without any melanoma cells, so we were able to continue on with the trial and double her dose in hopes that we could get enough of the drug into her CNS to control whatever was going on. With the addition of some new meds to help decrease the intra cranial pressure, it was under control for the most part until last Tues. A new MRI showed both lepto mets and multiple small brain mets. A multiple location, simultaneous hemorrhage of these small mets took her out of the cancer. Our neurosurgeon said he had never seen an event like that before. We can only attribute it to the mercy of God as He continued to have his hand on Jenna through this entire 6 1/2 year process. We experienced a lot of joy, and made the most out of every experience. I am incredibly blessed to have been able to see her through, and learn from her amazing attitude. She would joke that she felt like the knight in Monte Python's Holy Grail movie that keeps getting appendages chopped off yet continues to yell at his opponent "come back and fight, this is just a mere flesh wound". Well, melanoma may have continued to reduce her life, bit by bit, but she did not let it take her spirit, and she lived her life with grace and enthusiasm until the very end.
I know that there has been a lot of discussion on the board about the BRAF and inhibitor drugs and whether or these drugs cause the disease to go to your brain, creating some fear in doing these trials. It is my understanding that if you get the opportunity to fight melanoma long enough it will probably find it's way to your brain. In Jenna's case, she had such extensive disease before we could get her an opening in the trial, that it had too much of an opportunity to get there. These drugs are amazing, they can give you your life back quickly. Without question, the best available treatment, and we should collectively be fighting to get more trials open and cut through the red tape. It is hard enough fighting cancer, but fighting "the system" to get a drug that you know can extend your life (living) is just too cruel.
Thanks to all who post links to research and share their stories and support here. Your dedication to the board and one another carried us farther down the path than we thought we could ever go.
Lauren mom to Jenna