Fridays Appointment

Hello to all! As many of you already know we received a report Thursday night from Dr. Nick's wonderful nurse that my M.R.I. was clean. That was wonderful news! I had the best nights sleep I have ever had in a long time that Thursday night. The next morning at 10:30am we sat down with Dr. Nick to go over the results of the M.R.I. and to plan out the next phase of my treatment. (We also had a lot of questions for Dr. Nick which he dutifully answered.)

The first thing Dr. Nick said was congratulations on the M.R.I. scan. Just that morning he had a conference with the other Neuro and Oncology Doctors from the area and one of the cases they discussed was mine. Dr. Nick showed my pre and post M.R.I. scans and the whole group was in agreement that I was responding very well to the first round of treatments. One of my scans did show a small area of white density around the tumor site that was a bit of a concern. Dr. Nick explained that this area could be a low grade tumor or a "hot spot" from the radiation. He felt that the next phase of treatment could eradicate this troublesome spot.

The next phase of treatment will start as soon as soon as I receive my Temodar in the mail. (Temodar is my chemotherapy drug.) For the first round of treatments I was on 75mg per meter squared which equaled 165mg each day. For the second round of chemo they are going to bump the dosage up to 200mg per meter squared which is about 2.5 times the initial dose. (Which roughly equals 412.5mg.) The big difference is that for the second round of therapy I will be on a 28 day cycle. The cycle will consist of 5 days on for every 23 days off with a M.R.I. every second treatment. This will continue for 12 to 18 treatments as tolerated by my body. So, as soon as I receive my meds I will begin the chemo and take it for 5 days. I will then stop the Temodar for 23 days and have an M.R.I. and then go back on the chemo for another 5 days and repeat again...You get the picture. This will continue for about another 2 years. (Again, as tolerated by my body and without the need for surgical or radiation intervention.) We have no idea what the side effects of such a massive amount of chemo are going to be. I can tell you from the first round of treatments that the nausea and fatigue were no fun. I would expect the same if not worse from the second round.

The chemo is the ideal situation, though. If I remain on the chemo it means that the cancer is not growing. I do have the possibility of a regrowth at any time. That is why I am getting M.R.I.'s every 2 months. Dr. Nick did say that my tumor site was approachable with surgery. If I did have a recurrence they could go back in and take out the tumor a second time. A lot of people with brain tumors can't have operations. So although the idea of chemo for 2 years sounds like a bummer, it is the best situation I could be in.

We never posted the numbers before, but GBM IV is very deadly. My initial prognosis gave me about a year to live. Believe you me, when you hear news like that it's as if someone has gut punched you. My entire world flashed before my eyes. The first thought I had was for my wife and children. I couldn't imagine leaving my wife a widow and my children fatherless. I can say that I reprioritized my life in a hurry. When you are given a year to live, it really changes the way you view your life. Now that we have gotten over the first phase, though, my chances for survival have greatly increased. Although we are not out of the woods yet, we have found a path that can lead us there. For the first time since July I can eat salad and undercooked meat again. In 3 weeks I can stop taking the steroid that makes me so irritable in the mornings. For the time being I don't have to make the trips downtown Monday through Friday. The news on Friday was very good. God is definitely good and healing. I still don't know what his plan is with me, but so far I can say that I am blessed. I feel very humbled and fortunate to have the life that I have. I will enjoy it to its fullest.

God bless all of you!

Love,

Dan and Leah