Progression

Well once again, it has been a while since our last blog post.  Since then Scott has had a pretty rocky haul.  His tumor started showing progression in September 2014, so he began a new Chemotherapy (CCNU). With this tumor growth, Scott experienced some peripheral vision loss. He started taking this in December. After taking the Chemo for about a month, it did not seem to shrink the tumor any, so they added a second chemo (Avastin) to help target the tumor.  Then in February 2015, the scan looked good!  The tumor had quite a bit of shrinkage!  His vision did not return - it actually grew to be a little worse - this forced him to stop driving.  He also had a few other side effects with these Chemos as well - like pain and soreness in his hands and feet and extreme fatigue.  Through all of this Scott was still able to go in to work each day.

In April, Scott was given a higher dosage of CCNU and a lower dose of Avastin, because the Doctor believed that the Avastin was causing his sore hands and feet.  With this high dose of Chemo, Scott started experiencing even more fatigue, forgetfulness, and a shortness of breath and it was becoming evident that he had a hard time controlling his appetite.  I took him to the ER one day after I had picked him up from work, because he seemed to be in a very poor state.  He could barely talk and he had a hard time walking.  After a bunch of test were run, they concluded that the only cause for all of the symptoms must have been a "chemo overload".  We were sent home that night.  A few weeks later Scott started becoming very confused.  He would wake up from naps and not be able to distinguish reality with his dreams.  Two Weeks ago, it was determined that Scott could not work in his state of mind - He was often confusing client & employee conversations, etc.  So he has not been to work since - We were initially hoping that it was a chemo induced confusion and that it would be temporary; however, last week, Scott had progressively gotten worse with the confusion - bad enough to where one day, I was not able to carry on ONE SINGLE conversation with him that made sense.  Very sad to see Scott this way.  I decided to take him to the ER after he had his scheduled MRI.  After being in the ER for about an hour it was determined that he would be admitted.  They ran several more tests on him for seizures, infections, etc. over the course of three days.   All came back ok.  But his MRI did show that the tumor had progressed.  This time the doctors reviewed the MRI with us and we learned that the tumor is actually in several different areas of the brain (All on the Right side) but instead of just one central area, it is actually quite widespread.  At this point, the doctors believe that it is not a chemo overload, but it is his tumor that has caused these issues.  His tumor is causing swelling in his brain, therefore triggering issues with his cognition- there is pressure on his hypothalamus which is what is affecting his appetite.  We also learned that he has a "Vision Neglect" on the Left side where there is peripheral loss - with that comes a whole bunch of other issues! ;(

While in the hospital, and after reviewing ALL of this information it was brought to our attention, that there are not any other FDA approved treatments that can help Scott.  He has already taken all that is offered for his type of tumor (a GLIOBLASTOMA).  But Since Scott has thus far proven to be a miracle patient(an average person with a GBM lives about 14 months after diagnosis), the doctors did not want to just send Scott away, so they sent us to speak with the Trial Doctors at MD Anderson.

Today we met with the Drs in the Phase 1 Clinical Trials in the Targeted Therapy Section at MDA.  There we learned about a trial called WT2725.  It is a study where a Peptide vaccine is injected once a week.  In order to participate in this study, Scott has to carry a specific protein in his blood.  They will also check for certain mutations that his brain tumor may carry.  We were informed that there is a 25% chance that he will qualify for this study.    They gave us a little background info on this study - it has been in Japan for a few years and has shown a high success rate there.  The success rate is lower in the US and they contribute it to the fact that they believe that the Asian race carries a protein (which caucasians do not) that reacts better to the peptide vaccine.  However, MD Anderson has had three patients that have been enrolled in this study - two of the patients showed progression after 8 weeks - one of the patients showed progression and decided on his own to have surgery and when they went in for surgery they discovered that the tumor cells were dead cells - so the vaccine did in fact kill the cells!  He has been on the vaccine therapy now for two years with no growth!  So his initial scans showed a false positive - so to help prevent that they now have a certain type of scan that will eliminate the false positive of tumor growth.  We think that this sounds hopeful!

With all of this being said - (IN A NUTSHELL!) we need your prayers now more than ever!  I truly believe that if this is God's will then all of this will align perfectly - and if it is not his will, Scott will not be admitted into this study.  My fear is that Scott will not go back to being his normal self again - I pray that it is still chemo side effects and that once that toxic drug is out of his system he will be back to his old ways!  I would hate for him to have to continue down this road - he is actually quite miserable when he is not able to go in to work each day.  All he thinks about all day long is work, and when he is going back in to the office.  His Company has been such a blessing to us - I can't even describe how accommodating they have been - its amazing!  I also couldn't survive a day without my family and Scott's family.  We have just been blessed by everyone around us- (even complete strangers) are so generous- I pretty much cry on a daily basis because of someones generosity towards our family.  I can't help but believe that it is God showing us that he is there for us during this extremely difficult time.

Thank you ALL for your continued prayers, love, and support!  We could not get through this without them.

Love to all -
Candace