28 October 2005
Friday 11:25 PM (ET)
High-Level Journal Summary: Great medical news from an important meeting at the National Institutes of Health (NIH). My brain tumor has not visibly enhanced since 8/5/05 and I now have 100% certainty about the "5/23 schedule" for taking Temodar chemotherapy.
Current Countdown: 3 days until Temodar chemotherapy begins. Also, Day #42 of "chemo training" for treating my brain cancer.
Actual Journal: Where do I start? I need to keep this online journal entry fairly brief since I am tired and need good rest this evening. The main topic will be news from my medical visit with my primary neuro-oncologist, Dr. Howard Fine, at NIH.
Before I provide medical details from today, however, here are some items that are perhaps worthy journal entries all by themselves:
1.) The power at NIH went out, just 30 minutes after I got out of the MRI machine. It forced all brain tumor patients to be escorted to another building for a makeshift meeting area with Dr. Fine and his team.
2.) The Brain Tumor Team (Mom, Dad, me) met Ann & Randall Ford. Randy has a post-surgery grade II oligodendroglioma that is currently being treated with Temodar chemotherapy. We quickly discovered that their son Jeff and I were in high school band together at Lake Braddock Secondary School and that my Mom's first cousin, Mike Plante, is a very close friend with the Ford family.
3.) The 2003 Duke University study (see 10/25-27/05 journal entries) is creating powerful information that is more educational than I realized it would be. The information I have learned in the last 3 days played into my conversation with Dr. Fine in ways that pleased me. I want/need to continue this analysis to completion.
Today's Main Topic
All the above items have been trumped today by important medical news. I got great news at NIH about where I am and what specific steps to take next. Without further adieu, here are the most critical updates. More details will come in later journal entries.
1.) An MRI revealed that my brain tumor is visibly the same size as on 8/5/05. In nearly 3 months, it has not enhanced. That is, it has not grown. It is still a slow-growth brain tumor. We have not hurt my overall health by working sequentially to better control my seizures BEFORE starting Temodar chemotherapy, as had been medically recommended.
2.) I talked directly with Dr. Howard Fine, my primary neuro-oncologist, about the Temodar schedule I should be taking. I held a printed copy of the 2003 Duke University study (regarding 46 patients almost the same as me) and asked if there were comparable studies for patients on other Temodar schedules. (The patients in the 2003 study all took the 5/23 schedule of 5 days on Temodar and 23 days off.) The answer was resolute. No. There is no long-term response data for 21/7 or 23/7. As well, the toxicity for 21/7 or 23/7 schedules is much higher than for a 5/23 schedule.
3.) I can now have detailed discussions about Toxicity and I understand the fundamental concepts regarding Toxicity. Basically, White Blood Cells (WBC), Red Blood Cells (RBC), and Platelets are all fast-growing cells that are produced by Bone Marrow. Taking Temodar chemotherapy for 21 days and then only getting 7 days of rest (i.e., the 21/7 schedule) provides little opportunity for Bone Marrow "to rest and recover," if you will. On the other hand, the 5/23 schedule allows the body 23 days to heal and is therefore less toxic on Bone Marrow. If the Bone Marrow is pounded too hard for too long, the body may develop resistance to this chemotherapy and a patient may not be able to use Temodar chemotherapy ever again as a result.
As technically flawed as my explanation may seem to a doctor, those are essentially the concepts that are at play. So:
- No way am I risking Toxicity.
- No way am I going with a schedule that is not as well understood as the 5/23 schedule.
- No way am I going with a schedule that Dr. Fine does not recommend. (After all, he is a world leader in this field and in this specific research.)
But, I now understand and I am 100% sure -- based on a formed opinion -- not because a trusted doctor told me to do something. That solidifies my decision in ways that are convincing to me.
And to cap it all off...
One of the things I gave up today to be at NIH was attending a building dedication at my alma mater, Virginia Tech. I was hoping to attend this special event as a way to reconnect with Virginia Tech and faculty friends who are still serving. It made me a bit sick to have to cancel these plans, but it was simply "a short-term hit for a long-term gain." It was the correct decision-making for me, despite my desire to be there.
But, when I got home, I got this beautiful hand-written letter from a dear friend who was there today -- a woman who helped QBR (my brass quintet) start and who worked so hard with her husband to help fundamentally shape the diverse, respected university of today. From her letter, this gift:
"...will be there Friday for the dedication of the The Inn at Virginia Tech -- and will be thinking of you and your 3:30 appointment at NIH. You do seem ready for the appointment. We all want the best news possible for you!
"...never has anyone been more prepared for chemotherapy! You have really done your homework! You share it all so beautifully -- you will never possibly know the help you have given to others --- but with my brief experience in consumer health information I can realize the value all you share has for others. You answer so many questions (that many) don't know to ask. Even without direct interaction -- I want to say 'thank you!'"
Wow. This gets to the heart of what I am attempting to do vis-a-vis this website. I happen to be at the center of this website, but it is mainly about helping others. I cannot control my brain tumor, but I can control sharing my experience with others in ways that I hope are helpful. To hear such feedback helps me to understand that my energy is not being wasted in this regard, which is reinforcing.
Ut Prosim. "That I May Serve." This is the motto of Virginia Tech. Perhaps that is a dynamic in all of this. I hope so.
Final Thoughts
What a beautiful day. I know that. Power did not go off when I was getting my MRI. I met the parents of a band friend from the early 80's. I was still able to meet with Dr. Fine thanks to some nice "improv" work by Nurse Practitioner Cheryl Royce. I learned that my brain tumor has not grown. I am 100% firm on taking Temodar starting 10/31/05 on the 5/23 schedule. I got a meaningful letter from a kind and loving friend from Virginia Tech.
What more could I ask for...besides my bed and a good night of rest ASAP?!
