Sunday, 30 May 04
Completed round two of temodar chemotherapy during a trip with the family to Houston. Andrew had a basketball tournament, and Austin wanted to go to NASA. We also had a nice time visiting some of our relatives this weekend. I was very thankful to be able to participate in all of these activities, given that it was my last day of chemo and fatigue could have easily been an issue.
Tuesday, 25 May 04
Repeated ‘chirp’ noises last night led me to believe that a battery in one of the smoke alarms needed replacement. This morning, however, I realized the sound was being emitted from the prayer pager. This is the fourth battery change needed since I received the pager on 2 February 2004, indicitive of the number of pages I have received (in excess of 3500, I believe).
Monday, 24 May 04
CBC results from today are great. It has been about five weeks since the radiation and chemotherapy concluded.
Began chemo round 2 this evening by taking 16 mg of Zofran (anti-nausea), followed 30 minutes later by 400 mg of temodar. This will continue for four more days, followed by 23 days of no temodar. I am also continuing to take 400 mg of Celebrex daily, and will begin thalidomide soon. I will probably push for a 14 days on / 14 days off regime for round 3 of chemo. Taking temodar for a longer period of time at a lower dosage is beginning to show increased efficacy over the 5/23 plan in clinical trials. A lower daily dosage of TMZ also has the benefit of eliminating zofran, and the possible side effects to the digestive tract.
Saturday, 22 May 04
It seems that all of the survivors I know in the 2-4 year range followed the same approach during treatment; two years of temodar with possible add-ins. I was also told by our insurance company that the CPT-11 part of the Duke protocol is considered to be experimental and is therefore not covered. A letter of "medical necessity" from Duke might mitigate this situation, however. Being more aggressive, the Duke plan looks to be more toxic to my body than the temodar dominant regime; I had no problems with the 42 days of temodar I took during radiation treatment. So I am praying and pondering all of this to make a decision as to which path to follow. An aggressive ( I tend to favor more aggressive approaches ), but more toxic plan not fully supported by insurance (but we can work with and around this) versus a less toxic, completely insured approach that has been used by all of the recent survivors with whom I have communicated. The Duke plan has had reported successes. Published reports of these successes are hard to find, however. Please feel free to provide feedback to me regarding this difficult decision!
Wednesday, 19 May 04
Kathy and I visited the Duke clinic in Durham, NC to receive their ideas concerning a follow up treatment plan to compare with the M.D. Anderson / UT Southwestern recommendations. Duke wants to do a rotation of temodar, CCNU and CPT-11 for 64 weeks. M.D. Anderson / UT Southwestern prefer two years of temodar with add-ins such as Celebrex, Accutane and Thalidomide. The Duke plan is more aggressive, and I want to be aggressive. I also like the upbeat attitude and energy of the doctors and support staff at Duke. I can see why "at Duke, there is hope."
Monday, 17 May 04
All parameters from the blood work done today are very good.
Sunday, 16 May 04
Kathy and I went to a David M. Bailey concert in Allen, TX. David is an eight year survivor, and in combination with his impressive musical abilities, has an unusual and powerful ministry. David's question to God several years ago was: "Lord, what can You do with a tumor and a guitar?" This is my question to the Lord as well, except I do not have a guitar! I also met 17 year survivor Matthew Fullerton at the concert.
Wednesday, 12 May 04
The MRI film has been reviewed by M.D. Anderson (we were there on 11 May 2004), UT Southwestern (we were there today) and the imaging facility's radiologist. They all have the same opinion - I am clean! There is no sign of the traitor. This is a tremendous relief and answered prayer. This is such good news that I have a hard time comprehending it. Three months have elapsed since the last MRI, which was done two days after surgery. The MRI from 5/10/04 looks better than the MRI from 2/6/04, even though both represent a total debulking of the beast. The MRI from this week shows my brain to be stable and quiet. You can see the cavity where the tumor used to be, and you can see scar tissue, but the tumor itself has left town. You can also tell that much of the swelling from surgery has diminished. I plan to post MRI pictures on this website soon.
I am going to Duke next week to complete the collection of inputs for follow up treatment options. Pray for wisdom and let's extend our thanks to the Lord for the clean MRI...
Monday, 10 May 04
The MRI scan was performed this morning. The radiologist's report from the imaging facility will be received in a day or two, and a second report will be received tomorrow from M.D. Anderson when I visit that facility. UT Southwestern's interpretation of the MRI will be available on Wednesday, and the Duke report is due next week.
The lab analysis performed this morning shows a white cell count of 5,400 per microliter, an improvement from the slightly low reading of last week. Red blood count moved higher, more towards the center of normal limits, as did the hemoglobin. Platelets are holding at 185 k/uL. These are good figures.
Monday, 03 May 04
The CBC today shows a white cell count of 4,400 per microliter, which is nominally low. Other parameters are within normal ranges.
Sunday, 2 May 04
The dietary supplement regime consists of:
Celebrex, 400 mg/day
Omega-3 Fish Oil, 600mg/day (EPA, 360 mg/day and DHA, 240 mg/day)
Selenium, 100 mg.day
Green Tea Liquid Caps 1080 mg/day
Lycopene, 30 mg/day
Milk Thistle, 500 mg/day
Sea Kelp, 1280 mg/day
Coriolus VPS mushroom extract, 2500 mg/day
Primrose Oil, 2600 mg/day (GLA, 260 mg/day and Linoleic Acid, 1910 mg/day, plus misc)
Liquid Mint Chlorophyll, 100 mg/day
Multivitamin
This is about 23 pills per day!
