14 August 2008
Thursday, 10:50 PM
High-Level Journal Summary: Notes from my meeting today with Dr. Dipti Patel. Every question was answered and I was educated on things I did not know. I got the time I needed for doing so.
Dr. Patel and her team provided solid answers for how to resolve the issues I identified, and we had good communications about exactly what I wanted to get and why. It was so nice to have a doctor who listened and was able to resolve things in real ways on the spot. Nothing is perfect, but we made excellent strides today.
Going forward, I now know how to get blood in a timely way before each meeting with Dr. Patel, and I also know how to get more time with Dr. Patel so that more questions can be asked. Not only all this, there was good news in my hematology report which indicates promise for Cycle 7 and Cycle 8 of IV-based chemotherapy.
Countdowns:
1.) Day 17 of 28 in Cycle 6 of Carboplatin + VP-16 chemotherapy.
2.) On 8/15/08, introduce Rosemary Feit Covey with another person who is interested in doing an art exhibit featuring her brain tumor art. It will be nice to escape for a morning to do this.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 4 days ago.
2.) In 2008, I have had 76 SPS's in 227 days. This is an average of 1 SPS every 3.0 days.
Actual Journal: In my 8/13/08 online journal entry, I planned the meeting with Dr. Dipti Patel today. She is my hematologist and local oncologist. She is so outstanding that my Dad drives 3.5 hours to be part of this short meeting. That says a lot. Our preparation for today certainly paid off.
How things played out today
Here are some notes from today. With my plan firmly in place, I was able to get results in all areas that were of interest to me. In time order, here are my notes.
1.) I arrived at 10:00 AM for my 10:30 appointment. When I checked in, I told them I was there early so I could get my blood taken early. This would allow the meeting with Dr. Patel to start on time. They understood my intent.
2.) At 10:15 AM, I was still in the lobby and blood had not been drawn. I told them that I was going to be late for Dr. Patel unless I had my blood drawn immediately.
3.) I was told by the front desk that they had no control of process. Well, they didn't. I saw a more senior person in the background, so I immediately went to Armand and explained the situation. To be less public about this process issue, he took me to a side room where he told me why I could not be taken early for blood withdrawal. If someone with an earlier appointment arrived late, they would still get their blood taken before me.
4.) Armand suggested that I get my blood taken the day before I meet with Dr. Patel. This would eliminate this problem altogether. Plus, I would have all blood analysis 100% done by the time we start the meeting with Dr. Patel. Excellent. Problem #1 solved, but only by pushing hard and stating the problem.
5.) There was no further information about the cultures that were taken from my 7/30/08 hospitalization. As Dr. Patel said, "nothing cultured out" as they studied various samples they took from me while I was in the hospital. So, Dr. Patel can only guess that my lowered immune system is what allowed a bug to make me sick very quickly.
6.) Mid-cycle 6, my blood cultures are doing very well. Here are some key results:
• White Blood Cells: 3.30 K/uL (normal range is 4.60 to 10.20 K/uL)
• Neutrophils: 2.10 K/uL (normal range is 2.00 to 6.90 K/uL)
• HCT: 29.1 % (normal range is 37.7 to 53.7 %)
• Platelets: 176 K/uL (normal range is 142 to 424 K/uL).
7.) If my blood numbers look like this and nothing has changed in my 8/19/08 MRI at NIH, then Dr. Patel thinks that I can go ahead with Cycle 7 and Cycle 8 of IV-based chemotherapy. (Dr. Howard A. Fine makes that final decision, though.)
8.) My Mom asked about a possible Cycle 9 and Cycle 10. However, Dr. Patel quickly pointed out a few things:
• There is bone marrow toxicity which builds with time in my current treatment.
• We must be careful about bone marrow toxicity because of future treatments. We do not want to do damage today that prevents important future treatments from happening.
• There is less improvement from my Carboplatin + VP-16 chemotherapy with the passage of time. In short, there is less improvement with more cycles. What an important thing to learn today, and this only came up because of extended conversation with Dr. Patel.
9.) A "chemo holiday" would probably be scheduled after Cycle 7 and Cycle 8 so my body can recover before the next brain tumor treatment.
10.) Dr. Patel wants a copy of the next MRI and radiology report ASAP. I can request them from NIH (the National Institutes of Health) and get them to her immediately next week.
11.) I pointed to my hair which is growing back, to include my left eyebrow. Dr. Patel assured me that this is recovery from radiation and has nothing to do with chemotherapy. This is good to know, because I thought that my IV-based chemotherapy would prevent any hair from growing, just as radiation has done. I was worried that my chemotherapy was losing effectiveness, as indicated by hair growth. Now I know that my current chemotherapy and my current hair growth are not related.
12.) My diagnosis is considered "off path." That is, my diagnosis does not fit into any normal treatment for a GBM brain tumor.
Resolution of more time requested with Dr. Patel
As I suspected, Dr. Patel immediately found solutions for me in order to get more time with her. I had my Mom and Dad there to help with the onslaught of questions. That is good. And Dr. Patel took time to answer them all, despite her schedule.
When I told her that I just want to pick her brain and share information back, she explained how her time is limited right now. However, scheduling a 30 minute session rather than a 15 minute session will help to resolve this issue. I also shared some of the important brain tumor projects on which I am working, and that seemed to give her more reason to accommodate such an open exchange of information each time we meet. I think she began to see the win-win situations that await her in doing so.
So, today was a good day. I just hope that things are positive next Tuesday when I get my next MRI and that Dr. Fine is also in favor of Cycle 7 and Cycle 8. What a day. Whew ~
