Saturday, November 17, 2007

Blazing a Trail

I am wrapping up my trip to Portland to meet with Dr. Brian Druker from the Oregon Health Sciences University (OHSU). We are heading back to Rhode Island after a lengthy, but productive trip.

This consultation with Dr. Druker was initially set up over the summer. At that time, my PCR values started turning slightly in the wrong direction. This happened on two separate readings. My doctor at Dana-Farber became a little concerned and decided to take a few precautionary measures. First, he wanted to increase my dose of Gleevec from 400mg to 800mg. Second, he ordered a test to see if my body had started rejecting the Gleevec and some of my cells started mutating.

The PCR value that was taken the day before I started the increased dose ended up being the lowest I had ever had at that point, suggesting that the increased readings were possibly false. On the 800 mg, my PCR level jumped way down to a 3 log reduction, further indicating that my body is still responding well to Gleevec and that the increased dose helped move things along faster. This was all encouraging news.

In the meantime, we had scheduled the appointment with Dr. Druker and made flights to go to Portland. Going out here, I thought it would be a little anticlimactic. Instead of a list of questions about alternative treatment options, I really had no new questions to ask him.

We met with Dr. Druker two days ago. OHSU is a beautiful facility on the top of a hill overlooking Portland. When we walked into the clinic, it was a stark contrast to what I am used to at Dana-Farber. We were the only ones in the waiting room. At Dana-Farber, we are lucky to get a seat.

First, we met with his physicians assistant, Carolyn, who was so pleasant and upbeat. She spent a lot of time with me and my family obtaining symptom information for Dr. Druker. She also spent time answering our questions. We never once felt rushed. She was great. Dr. Druker came in a little while later to talk about my history and examine my current readings and treatment. He had a commanding and gentle presence.

Most scientists that I have encountered who are at the top of their field tend to be less than ideal with patient interactions. It is almost as if they feel that this is a necessary evil of their job. Perhaps I am more aware of this because I teach medical students about interviewing skills and good bedside manners. Dr. Druker could not have been more pleasant and professional.

He quickly glanced through my file and wondered about some specific information that he had not obtained. He is a numbers guy and likes the details. As he examined my PCR values, he went through a thorough explanation of how statistically, my numbers had probably not gone up. Because of the sensitivity of the PCR test, the is wide error margin in the values and my numbers were all within that range. He was pleased to see, however, that the 800 mg had bumped my PCR values way down in a significant manner.

He spent so much time with us drawing graphs about the progression and treatment of the disease. He talked about his philosophies about long-term treatment and the possibility of changing the treatment from maintenance to a cure at some point in the future. He answered all of our questions and spent a long time with us. Overall, we were at the clinic for more than 3 hours.

My wife and my parents discussed the appointment and agreed that we were so comfortable with Dr. Druker and Carolyn that we wanted them to be a part of my treatment team. This means going out to Portland every six months. The good news about that is that there is now a direct flight from Boston. I will be returning in May for a follow-up visit.

Needless to say, this visit was much more than I had expected. I understand now why so many people with CML come out to OHSU. As Dr. Druker said, "I only treat patients with CML." If you can go to the world expert, wouldn't you?

I am so grateful to my wife and parents for accompanying me on this long and emotional journey. I know that CML does not just affect me, but everyone around me, especially my family. I think it might be a little harder on them than me. It is too easy to forget that sometimes and I appreciate all of their support and love during this process.

8 comments:

Anonymous said...

We are thrilled you felt it was such a worthwhile visit. It sounds like he is a great doctor to add to your team. I would certainly like to travel with you on one of your future visits out there.

See you soon.

Love,
Dave, Lisa, and Josh

Lori said...

I told you that he'd draw the graphs! I only go once a year though, as part of my treatment. Maybe thats OK with them because I am in molecular remission. I'm glad your trip went well!

CresceNet said...
This comment has been removed by a blog administrator.
David said...

This is all so positive; Fran and I are very happy for you and your family.

Have a wonderful Thanksgiving.

Love,

David and Francie

Papa Bob said...

Well, well done! I am so pleased you are happy with Dr.Druker and between the good Doctor and Dana Farber what more valued assistance can you get? I'm happy you received the second opinion and thrilled that everything is going in the right direction. You must be exhausted from the trip. As a result of finally meeting Dr. Druker the anxiety before meeting has hopefully now been relieved. We have all been concerned and have been "pulling" for you since day one. May only good news be ahead of you ....

Papa Bob

Anonymous said...

We were very lucky to be able to accompany you and Melissa to Portland.It was a terrific help to all of us together. To meet someone of Dr. Druker's caliber was truly inspirational and we appreciated being a part of this appointment.Mom and Dad

Annie - Steven's mom said...

Hi Jon
That sounds like a really great visit :-) I knew it would not be anything other than wonderful.. I am thrilled that you will be seeing Dr Druker and Carolyn regularly - they really are the best.
It's good to hear good news and positive thoughts like yours :-)
Love and light
Annie
Steven's mom
http://livingwithcml.blogspot.com

Anonymous said...

Just wanted to check in and say hi. Thanks for reading my post on Erin's blog and for commenting on my own. What did people do before the internet? It's very cathartic to write about our experiences and I'm sure you feel the same way. Thanks for reading!

Jessica