Thursday, December 18, 2008

More research before the second opinion

Dr. SH advised me to keep off the's a very depressing place for this, filled with old research, backward-looking forecasts for life expectancies, etc. He recommended only, so I started there.

But soon, I couldn't help myself because this website just didn't have enough answers. By both nature and professional training, I am used to diagramming options and bottoming out all possible solutions, pros and cons. So I had to learn more.

I also spoke with a few friends. One of them, RH, mentioned that his father, DH, had received an allogeneic transplant about six years ago and that it was not that big a deal and DH was now cured. This was obviously a very tantalizing concept, so I explored it further.

These transplants began back in the 1980s. The first test group experienced a 47% (FORTY SEVEN!!!!) one-year treatment-related mortality rate. That means basically half the people in the study (and there were a few hundred over a ten year period) died from the treatment. In the 1990s, this number improved to about 33%. Still pretty high. Now, the number might be lower and some centers such as Stanford claim to have managed it down further. I wanted to explore just a little bit more.

Another interesting thing I learned is that the reason Dr. BB is in Arkansas is that Sam Walton (billionare founder of WalMart) died from Multiple Myeloma and he donated a lot of money to the University of Arkansas to build a Myeloma center. They hired Dr. BB away from MD Anderson in Houston, which is one of the leading cancer centers in the country, to head it up.

Another friend told me about an organization called Pinnacle Care. Pinnacle Care is a high-end medical concierge and they do everything from scheduling doctor appointments, ensuring records are being sent from point A to point B, doing research on clinical trials and any questions I might have (they have a staff of 12 properly credentialed researchers), accompanying me on doctor's visits to take notes, pre-registering me for appointments and using their network of doctors to get into see physicians that are very, very difficult to schedule. I scheduled a meeting with one of their representatives and discussed hiring them with Jill. They have several levels of membership, ranging from a few thousand a year to get a super-duper physical and a bunch of advice on how to live more healthily to intensive levels of service for someone in my condition. Such levels of service are extremely expensive, so it wasn't an easy choice...but I didn't want to be on my deathbad wondering if I'd done all I could so I mulled it over.

At this stage, there seemed to be a number of schools of thought:

No transplant -- Dr. JB
One autologous transplant -- Dr. SH (and per him, Mayo and City of Hope)
Multiple autologous transplants -- Dr. BB
Allogeneic transplants -- my friend's dad's doctor (Dr. RC) and possibly Stanford

Lots more to research, and lots of decisions to be made.

Jill and I met with EF, a delightful woman from Pinnacle Care who would be my case manager there. I felt very good about the meeting -- she's a very caring person and an RN, which would come in handy. Still, I wasn't certain yet about Pinnacle Care because of the expense, and the fact that the plan I needed was for a six month installment. I felt that I would need some up-front work to determine what treatment was needed, and then nothing more until such time as treatment was to begin. So I decided to wait and see until after I met with Dr. SF at City of Hope.

No comments:

Post a Comment