Sunday, July 19, 2015

GBM and Clinical Trials

My last two MRIs have been at 3 month intervals and my next one is in 1 month.  Unfortunately the MRI from Monday shows two suspicious new spots in my brain.  They are removed from the original tumor location and are too hard to evaluate through the recent MRI images.  In one month a new MRI will hopefully show their status: growing or staying the same. 

They are most likely radiation narcosis.  That is a bad side effect of the 6 weeks of radiation treatment I had in 2014 during June and July. This is a problem by itself and one of the mixed blessing of still being alive...  think simply that the cure can kill you if the disease didn't get you first. Simply living in the uncharted waters of the place called beating the odds. Sorry about the poor or crass  bedside manner but I do know how to smile through tears!

If the MRI is inconclusive they will order a MRS which is a new test for me.  It is, as I understand, like an MRI with a different contrast agent.  This agent can read the chemical nature of my brain and of the spots to compare against what they know how GBM displays. The least likely, but still a reality, option would be surgery as the Doctors say the true story is in the tissue.  The new spots are deeper in my brain, so to avoid surgery would be best!

At this point we continue with the chemo because it IS showing success in keeping the original growth area from showing any new growth. Round # 13 begins July 26th.

Cousin Steve is a planner.  He had sleeping space ready for us at the time of diagnosis.  A university by him is a leader research center and Steve is advocating not specifically for us to come to his area, but for me to get the best possible care and odds out there.

Getting the ducks in a row.  This is MY list meeting criteria I decided as I was searching. Likely not the best list. Likely not the list of the best.  The list of places that spoke to me. Funny in that heart breaking way with the initial diagnosis the discussion of clinical was "best for when traditional methods fail."  Now, a year later, it seems that some choices along the road will rule me out.  Story of my life!

American Brain Tumor Association research link

  • New Drug Development and Repurposed Drugs
  • Targeted Therapies, Signaling Pathways, Gene Expression
  • Personalized Medicine
  • Imaging
  • Vaccines and Immunotherapy   
National Brain Tumor Society Raising Awareness

Musella Foundation Tracking Clinical Trials

Cleveland Clinic  University Hospital
Duke University Robert Tisch Brain Tumor Center
Henry Ford Hermelin Brain Tumor Center
Mayo Clinic Clinical trials
MD Anderson University of Texas
Rush Clinical trial
UCSF  Clinical trials