Monday, June 18, 2012

HOPE


I am back in Texas trying to regain my focus and get some work done on our aquaculture operation. 


Two weeks ago tomorrow Lori was told her cancer which had again metastasized in the brain and now also her lungs meant she had less than a year to live.


The past two weeks through the efforts and contacts of numerous dear friends and the interventions on Lori's behalf by absolute strangers, we have sound reasons to believe that diagnosis was premature.


In an amazing sequence of events we have gotten Lori into a clinical trial at Georgetown University Hospital in DC, where they will be using a new PARP1 inhibitor in conjunction with chemotherapy to try and attack these new "metastasises". 


This is a chemo treatment that is far less draconian than the "end of life chemo" prescribed by MDA. 


This drug combination was originally recommended by Lori's Maryland oncologist. 


John Aquilino, my close friend and business partner for 17 years, after researching this approach, had been absolutely convinced this was both the correct approach and an essential piece of the treatment for Lori in order to battle the return of the triple negative breast cancer. 


Through incredible networking we managed to get a national clinical trial that had been closed for a month re-opened for Lori. 


We were told this could not be done, however today she is having the baseline MRI required for the clinical trial and her treatment starts a week from today.  


The PARP1 inhibitor called "Iniparib" has been in different stages of clinical trials for the past three years and PARP1 inhibitors from many drug companies are being tested and providing some optimism that they may be one of the keys to eventually eradicating cancer.


In addition, through more effort we have researched and discovered a second stage treatment also in clinical trials that involve the ImMucin vaccine. This treatment in combination with the Iniparib and chemo treatment could be a 1-2 punch that (if Lori's system is responsive) could actually prevent the triple negative cancer form continually reappearing in other organs. 


Through the efforts of a wonderful researcher at the Mayo Clinic, who has taken a personal interest in Lori's case, we had Lori's tissue tested and she is a "strongly positive" match for the ImMucin vaccine. This is a very good thing and an indicator that she "should" respond well to the vaccine therapy.


We are now beginning the effort to have Lori accepted in an ImMucin vaccine clinical trial as soon as she has progressed far enough along in the Iniparib treatments.


In a very encouraging meeting with a brilliant neurologist at John Hopkins Hospital in Baltimore, Maryland last Friday we were told, 1) our combination approach of the Iniparib therapy and then the ImMucin vaccine therapy was both scientifically sound and rational and 2) through the use of focused radiation (stereotactic surgery)  to limited area's should the Iniparib therapy not shrink the new brain lesion which is very small at the moment we would have plenty of time to have it removed at John Hopkins. He also was quite adamant that given Lori's overall physical condition, current state of her triple negative cancer, and her age it was very premature to even begin to talk about "how long she has".


It has been an emotionally brutal and grueling two weeks. Lori still has a lot she has to undergo in the weeks and months ahead. 


But with friends like we have and the ability of those same friends to open up doors that seemed closed and to literally move mountains, and with God's will, we all expect to have Lori here with her dogs, her other pets, and her son, and us for many years to come. 


In future postings I will probably write about the absolute vital need to be an advocate for those you love as you navigate the medical system, and the difference a single doctor can make, and indeed how when at times during the past two weeks when I felt I could not take another disappointment God answers prayers. 


But for the moment I am just taking a moment to appreciate that we now have a treatment pathway for Lori that gives us real hope.  






No comments:

Post a Comment