18 January 2007
Thursday, 11:10 PM
High-Level Journal Summary: Preparing for the meeting with Dr. Howard A. Fine on 1/19/07. While ostensibly a chance to review my bi-monthly Perfusion MRI, it is also a chance to ask a range of questions to Dr. Fine, who always makes time to answer questions at levels that patients and caregivers are able to absorb. Topics for 1/19/07 include:
- Notes from my local oncologist.
- The accuracy and usefulness of my bi-monthly Radiology Reports.
- How long I should take Temodar, with respect to developing secondary malignancies.
- Participation in the Glioma Molecular Diagnostic Initiative (GMDI) project he is leading.
- Whether or not my brain cancer is categorized as a "terminal illness."
- The FDLI's Colloquium on Access to Unapproved Drugs on 2/27/07.
Countdowns:
1.) Day 25 of 28 in my 16th 5/23 Temodar chemotherapy cycle.
2.) Meet with Dr. Howard Fine on 1/19/07 to review my 1/17/07 Perfusion MRI.
2007 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 12 days ago.
2.) In 2007, I have had 1 SPS so far.
Actual Journal: Friday (1/19/07) is going to be a big day simply because of the opportunity to meet again with Dr. Howard A. Fine at NIH. We will review my 1/17/07 Perfusion MRI and compare it to my 9/15/06 Perfusion MRI. There is always a lot of preparation that must be done to be ready for such meetings. After all, Dr. Fine and his team serve many patients and caregivers, so efficiency is important. I need to have accurate reports lined up and prioritized questions for him. With that in mind, here is my cumulative list of things to discuss with Dr. Fine and his team.
Questions for Nurse Practitioner or Fellow
1.) Share certain details from my latest exam by my local oncologist, Dr. Dipti Patel (as listed below, verbatim).
Mr. Welch is a 40-year-old gentleman with a history of grade 2 astrocytoma who has completed over a year of Temodar and he had done extremely well. His only recent complaint is increasing fatigue on day #3 through day#8 and some constipation issues related to the fact that he had titrated down his Colace and his cytokine. No other acute issues. He is back to his baseline activity and recently returned from a trip to the west coast.
On physical exam, he is afebrile. Vitals are stable. Lungs are clear. Cardiac exam is normal. Abdominal exam is soft. Extremity exam reveals no clubbing, cyanosis, or edema. Neurologic exam is nonfocal.
WBC count is 3.0. ANC is 1984, hemoglobin is 14.7, and platelets are 242,000.
ASSESSMENT/PLAN:
- Proceed on with cycle #17 at 360 mg (three 100 mg tablet plus three 20 mg tablets) of Temodar with appropriate Kytril on an every 28-day basis. He will have restaging MRI on 1/17/07 and will followup with Dr. Fine on 1/19/07 at the NCI. He also has follow up at Duke and University of Virginia regarding potential length of treatment as he is concerned about secondary malignancies on the Temodar.
- Continue to follow CBCs and ensure his ANC is above 1500 and platelets are above 100,000.
2.) Per my 12/18/06 online journal entry, my 11/15/06 Radiology Report caused many questions. I found errors and then questioned if this report is even reviewed by Dr. Fine. Am I finding potential breaks in business processes?
Questions for Dr. Fine
1.) Drive the issue of how long I should take Temodar chemotherapy. This is one of the big questions for 2007.
2.) Per my 12/8/06 online journal entry, ask Dr. Fine if he wants samples of my brain tumor for the Glioma Molecular Diagnostic Initiative (GMDI) project he is leading.
3.) Is my type of brain cancer considered a "terminal illness?" I want to know this since this is an apparent "classification" given to certain patients when it comes to having access to certain drugs during cancer treatment. Am I officially considered to have a terminal illness? Yes or no?
4.) Tell Dr. Fine about the FDLI's Colloquium on Access to Unapproved Drugs on 2/27/07. I will be interested to get his perspective on this, especially as relates to participation in clinical trials.
5.) Tell Dr. Fine that Jake Kennedy says hello. They went to high school together at Sterling Regional in Somerdale, NJ. (That would be a nice way to end our conversation on a positive note. It is always good to bring a smile to Dr. Fine, who often has to deliver tough news to patients during clinic days.)
Final thoughts
This agenda will flex throughout the day. After all, I will be there with my parents for many hours before meeting with Dr. Fine and his team, as is always the case on clinic day. So, we will have time to review this initial agenda and makes changes. Regardless, this is a solid starting point. I can use the computer in the waiting area to print out necessary materials so we go in as if it were a board meeting.
Sorta have to have your game face on when meeting with the likes of Dr. Fine. Why? Because Dr. Fine has such tremendous depth of knowledge, and his perspective CAN be tapped. However, he will make judgment calls (I believe) based on a team's ability to absorb information. I have observed that he will provide the level of information that he feels is appropriate and helpful, but going beyond that point serves nobody. So, coming in with pointed questions and with "our homework done" sets the stage for richer conversations and more learning.
