Sunday, July 18, 2010


On Friday the 16th I had the Stereotactic Radio Surgery procedure performed.  There isn't a lot to report, besides the fact that having your head held in one place for an hour and a half is long enough to wish you were somewhere else.

The procedure went well according to the technicians, but we really won't know anything until we do new MRIs in about 8 weeks.  Until then, it's a holding pattern until we get the MRI results that hopefully show us good results so I can get enrolled on the MEK study at MDACC.  

Thanks to everyone's continued support and kindness and a special shout out to the Team Firestorm riders who rode the 204 miles of STP this last week.  Great ride and thanks for your show of support.

Friday, July 9, 2010

Wild Ride

The roller coaster ride around here continues to go up and down and throw us wild curves when we least expect them. I probably should have posted an update sooner, but until yesterday we didn’t know where we were headed after the last wild corner.

After the Braf drug stopped working, we had decided to enroll in another clinical trial at MDACC for a MEK inhibitor drug that worked similarly to the Braf drug. So I travelled to Houston again at the end of June. I arrived Sunday June 21st and was suppose to stay through Thursday of that week. To start off with on Monday I had blood tests then an MRI of the brain. I hadn't had an MRI for about 6 months and one was required before I could start the MEK drug study. Monday afternoon I met with the doctor administering the clinical trial to discuss the treatment and to enroll in the study. When we met, we went over everything - a physical and my current well being and everything was good until we looked at the MRI. The MRI showed 5 very small lesions in my brain. The largest of the lesions was about 6 mm in diameter.

One of the criteria for enrolling on MEK study is that if there are lesions (aka metastases = mets) in the brain they have to be stable (i.e. show now growth) for at least 2 months.; We don't know how long they've been there. It is likely that they are growing and not stable. So for now I am unable to enroll in the MEK study.

Since I wasn't able to start the new treatment I went back to my hotel, changed my flight and came home Tuesday morning.

Hearing that the cancer had spread to the brain was difficult news. This may have been the most difficult blow yet. But from where I sit now, we are very optimistic and feel that we have a lot of reasons to hope for a positive outcome.< After I got home we set up an appointment with Dr. Grossmann at HCI. I hadn’t seen him since I started the Braf trial in January. It was good to see him and he helped us understand what our options were and we determined a game plan. We decided the best plan of action would be to treat the brain lesions now. After the treatment we would monitor them and if they prove to be stable for two months then go back to enroll in the MEK clinical trial. In order to treat the brain lesions Dr. Grossmann referred me to a neurosurgeon at HCI. Prior to meeting with him, I had another more detailed, higher resolution MRI to better determine the exact location of the lesions, and to make sure there weren’t any that didn’t show up on the MDACC MRI. We met with the neurosurgeon on Tuesday of this week. He suggested that we use Stereotactic Radio Surgery (SRS) to treat the lesions in the brain. They have had very good success treating cases similar to mine with this treatment, and especially good success in melanoma patients. The success rate is somewhere around 80%. We are used to seeing numbers the exact opposite to that, thus the optimistic and positive outlook.

Despite having surgery in its name SRS is more of a procedure than a surgery – no incisions involved. SRS is also known as Gamma Knife or Cyber Knife. My rudimentary understanding of the procedure is that it directs a very intense, very focused beam of radiation at the lesion within the brain, killing it on the spot. It is an outpatient procedure that will take one day and with no activity restrictions following.

I go in on Friday the 16th of this month to have this done. Once this is done we will have to wait two months before we start the next treatment. We will do scout scans about 4 weeks out to see how things look and then a full MRI at 8 weeks to see if they are stable (hopefully nothing but scar tissue left). If they are stable then I’ll travel back to Houston to enroll in the MEK trial. If not we still have a number of good treatment options that include the TIL cells that were harvested in ’09, Ipilumimab and another chemo regimen.

This has been a long journey and from the looks of things, it will continue to be. We are very thankful for people for enduring with us through this. The fact that people continue to show care and give support means the world to us. THANKS.