Back From Duke!

Dear All,

Well, we arrived back from Duke last night and all is well. My in-laws took great care of our kids and Leah is off driving carpool this morning. It is amazing to me how one can travel off to a different state and then in the blink of an eye go right back to normal routines. Well, enough of that.

Our visit at Duke was very good and informative. We got to meet the famous Dr. Friedman and all his wonderful staff. Our first appointment was on Monday at 12:00pm at the Neuro center. Yes, these people work right through lunch. They rotate their eating time so someone is always on duty. Also, they have a sign in the waiting room that states if you have been waiting for more than 20 minutes, tell the front desk. I was very impressed by this as I have waited in some doctor's offices for more than an hour and then no apology from anyone! We waited for maybe 10 minutes before we were called back. The first thing that was done was my vitals. They took my height, weight, blood pressure and pulse. We were then sent back out to the waiting room for maybe 5 minutes before we were called back in. This time we got to meet Dr. Friedman's personal P.A. who was fantastic! Her name is Antoinette and we went over pretty much everything. She discussed my diagnosis, which was reconfirmed. Leah and I were both hoping that maybe Florida Hospital messed up their diagnosis and I did not have GBM IV. I had to have the pathology lab at Florida Hospital send the slides of my tumor to Duke for this testing. Duke wanted 15-20 unstained slides plus, "1 H&E recut from each block and immuno slides." At the time of my surgery when my tumor was removed they did a frozen section, or a biopsy, of my tumor. Apparently they kept some on hand for further testing. This is what was sent to Duke for further analysis. Duke, in their initial letter to us, stated that they had been known to disagree with other pathology reports, so we were a little hopeful for an initial screw up. Oh well.

We then discussed the Duke plan of action for Dan Sams. They feel very strong that mixing up the chemo medications is the way to go. Dr. Friedman's opinion is that these cancer cells will eventually get used to the Temodar, (my current chemo drug) and will quit responding to it. He wants to keep the body guessing and mix up the medicines. This is a philosophy I am very familiar with. It is the same with exercise. With a weight training program your body will eventually stop producing results if you do the same program day after day. You have to mix it up and keep the body guessing as to what is going to come next. Same with cancer and chemo. Also, Duke has discovered a drug that has been used for awhile to treat other types of cancer and is showing great results with brain tumors. This drug is Avastin and works by cutting of the tumor's blood supply or essentially starving the tumor of what it needs to grow and reproduce. The only problem with Avastin is that it is not F.D.A. approved for brain tumors. This is why my local oncologist has not been able to prescribe me this treatment. Working with Dr. Friedman, my local doctor can now help me receive this drug that I need so badly.

The new chemo will be a little tougher than the Temodar. First of all, it is a true chemo in that I will have to sit in a chair for 5 or so hours every 2 weeks to receive the medications. The first medication they will introduce will be the anti-nausea, Zofran. Next will be the new chemo, called CPT-11. Then, after all of these are introduced comes the Avastin. This process will be repeated every 2 weeks with a duration of 12 weeks total. At the end of this cycle I will have another MRI and then travel back to Duke for further analysis. This whole process is scheduled to start on January 3rd after another MRI that I will have on December 31st. The MRI in December is for what they call a "clean baseline" to compare future films against. Also, the new chemo, CPT-11, is known to have some pretty nasty side affects. I won't state them here, but patients have been known to feel pretty bad for a few days after the introduction of the meds.

The general plan would then call for another chemo to be introduced for another 2 cycles with another MRI and then another trip to Duke. After that we would return to the Temodar for another cycle and so on so forth. The idea is to mix up the Temodar with the Avastin and these other 2 chemo's for a rotation of what is 3 cycles. Temodar is the first chemo, CPT-11 is the second and the third I can not remember the name of. I think it was CCNU or something like that. The Temodar calls for 28 days, (5 on with 23 off) the CPT-11 calls for 6 weeks, (1 day on for every 13 off) and the other chemo we do not know what the timeline is going to be. We will find out when we return to Duke in 12 weeks. I will start the CPT-11 with the Avastin on January 3rd and stay on this regimen for the next 12 weeks. Yee Haw!

Anyways, after speaking with Antoinette for awhile we got to meet Dr. Friedman. What a guy! He was like a bundle of lightening that stormed into our exam room. He was dressed very humbly in a pair of worn jeans and a casual cotton I-Zod type shirt with tennis shoes. No white doctors coat or anything to denote him as someone special. His hair was a little disheveled but the sparkle and intelligence in his eyes was very evident. He spoke at about a million miles per hour but was easily understood and made his points clearly. We got so caught up with him that we forgot to ask him some important questions we had. I have since sent him an e-mail and am awaiting his reply. He basically went over his reasoning for switching up the chemo's and asked me what kind of insurance I had. When I told him, he asked if I would have any problem going on 60 Minutes with him if my insurance refused to pay for the non-FDA approved drugs. He said that 60 minutes was his show of choice for stuff like this. Wow! I like this guy! Anyways, he wrapped up by asking if we had any questions, which after the 60 Minutes comment we didn't, and he left. Antoinette came in shortly after and we finished up our office visit. All in all our first day at Duke took about 3 hours and we left feeling very good and positive about the future.

The next day was not nearly as exciting but was still very informative. We met with a great social worker and a nurse. Leah and I enrolled in 2 studies, me to find the cause of GBM IV and Leah to determine the amount of stress that the caregiver goes through during this process. I was very surprised to learn that the caregiver stress level is 2-3 times that of the actual patient. If that is true we should all pray very hard for Leah over these next few months. I can't imagine that amount of stress being experienced by one individual. I know how much I feel on certain days and to think that my wife is 2-3 times that is very hard to comprehend. God bless you, Leah. I love you.

We arrived on Tuesday at 8:30am and we left around 12:30pm. We were talking with the brain tumor staff the whole time. Oh yes, I forgot to mention that day 2 took place at the Preston Robert Tisch Brain Tumor Center, which is actually in the basement of the same building we were in the day before. They are hoping to get their own building some day, which I will vouch for they need. (It was a long walk to the bathrooms from the Tumor Center.) When we left we went back to our hotel and packed and checked out. After eating lunch is was time to return the rental car and go to the airport.

I meet with my local oncologist this Friday to map out our treatment plan for the future. I am looking forward to getting under way with this new treatment. I feel positive about halting the growth of this cancer and getting back to being 100% healthy. I continue to pray for total healing and thank all of you who have stuck by my side. God bless you all!

Love,

Dan and Leah