The Next Phase and a Different Statistical Category.

BLOG 9/21

My apologies to the many of you who have contacted me for news since my last blog message.  Over that time I was waiting on the results of a Pet scan (the last chemo was late June) on 8/29  and a brain MRI on 9/6 (I had 15 days of whole brain radiation) in early August.

I sweated this out. But was supported by family and by many friends through email, cards, and phone calls.  Thanks all.  Included in this support were chances to see four former students Troy Baird (Oklahoma) who was here nearly three weeks (some suspected he was beating the heat) with me, Dan Abel (South Carolina) who spent a week,,, and both Diego Bernal (Massachusetts) and Chugey Sepulveda (Oceanside)..(D was here for a scientific meeting and we three got together for dinner and to work on a manuscript… And yes, this ms is now back in my court.)

 All of these visits were terribly important as the teacher can see his students in time.  This is especially in the case Troy and Dan, where there was time to reach a new and deeper level of friendship that comes from talks about the past, the present and the future. 

While these visits and the slack time I had after treatments stopped (however, the neural effects of X-ray persist still, 6 weeks after) for a while were good things, the medical results, well, were not the best, nor were they the worst.  

These results are mixed.  First, two of the three abdominal tumors had not grown but one had, not the best result, but there were no new metastases.  So, that is partly good and partly bad… 

The MRI results were similarly mixed.. on the good side, the general status of my brain, where there were many small tumors in February, has not changed.  It is thus stable and this is good news per se.  On the other hand after 25 days of whole brain radiation, there was no effect of the X-ray on the tumors therein.  This seemed to trouble one Dr. but, not another.  (So it is for melanoma.)

So, now we start the next phase. On the 22^nd I start chemotherapy with Ipilumimab (Yervoy).  This was just approved by the FDA in March.  My treatments are four, given via IV every two weeks on an outpatient basis and on Fridays so that one can spend the weekend dealing with the side effects which are formidable (Go to the Yervoy website).   So 11/24 will be my last treatment for this 1^st round…and about 4-6 weeks after I will get another pet scan.   Let’s hope my constitution will bear this and allow me to complete the four treatments.  If I can’t well…. We then go to another and probably final drug.

So, I am ready to go on this next step (but am very afraid) and know that with my wonderful family behind me…as well as many old and good friends thinking of me every day, I can go down this road fighting as hard as possible just to have more days to be with my family and particularly my gkids.  Nine months ago when we started down this road, my hope was to make it as far as Melanie’s 3^rd birthday which was on 9/14, a week ago.  I also got over another statistical hurdle which is that fifty percent of stage IV patients only live an average of 6 months after diagnosis.  Speaking of statistics, some of you may have wondered about the phrase “into a different statistical category” in the title of this missile.  Well, after reading a lot of literature on the treatments, the standard chemo drugs are generally described as their effect on tumor growth and morbidity is expressed in terms of months since diagnosis.  However, Yervoy is different in that the statistic of importance is months of life extension since it started to be administered. 

So, I am focusing on setting another goal for survival…let’s try for a year or more.  The only thing I can say about my diagosis is that REALLY REALLY knowing your time is running out puts a vital energy into retrospection about life and experience and friendships that have lasted a lifetime, and those special people who changed your life, and to also seize every opportunity to enjoy every aspect of the daily life that awaits you…. And cutting out thoughts that I have been cheated by losing out on another 20 years of enjoying my family, science, and my treasured hobby, oil painting.    jbg