Monday, May 19, 2008

Portland Take Two







My wife and I just returned from a trip to Portland Oregon to meet with Dr. Druker. We decided to make it a mini vacation as well. We met our friends Angela and Russ from the Bay Area who we met last year in Italy. It was a wonderful reunion.

Let me talk about the main purpose of the trip which was my second appointment at OHSU. I met with Carolyn, Dr. Druker's nurse and then Dr. Druker himself. We reviewed my symptoms and progress over the last 6 months. They were both pleased with how well I was responding to Gleevec and Dr. Druker even thought I was slightly ahead of where he might expect me to be at this point. I was always a little bit of an overachiever.

The most interesting discussion was about blood testing, and specifically PCR tests. Of all the blood tests I have done, the PCR tests tells me how much my body has changed due to Gleevec. It is such a sensitive test that it can pick up extremely small traces of CML cells in the blood. I started off with a reading of 34% and have gone way down to 0.01%. This was a big drop. The frustration that Dr. Druker noted was that he had a hard time getting all the information he wanted from my lab test results. I have my blood work done at Dana-Farber and faxed to him. Since the PCR is not a FDA approved test, there are no rigorous standards about how to conduct the test. That is why when you start at one lab, you need to keep going to that lab. Otherwise, you are comparing apples to oranges. If you think about when you go for regular blood work, you don't question which lab does it because they should all be getting the basic readings in the same manner. This is not true of the PCR test.

As such, Dr. Druker suggested trying out a new service for CML patients that I had not previously heard about. For fellow CMLers out there, this may be of interest to you as well. I can have my blood drawn at any lab in the country and then shipped to a lab in Oregon for the most extensive type of CML blood work available. For more information about this service, visit the CML Alliance website. The lab that actually performs the test is through a company called Molecular MD. My plan for now is to have the blood test done with the new lab over the summer and return to Portland next fall. In between, I will be at Dana-Farber in September for a bone marrow biopsy.

So much for the CML stuff for now. Portland is a fantastic city and absolutely beautiful. You can go from the beach to the mountains within minutes. There are some pictures of our friends and myself and my wife at the Japanese Garden in Portland. The rocks are from Cannon Beach on the Oregon Coast. Haystack Rock is the most photographed rock in the world. You will probably recognize it from other pictures or from movies you have seen. I also have a picture from Mt. Hood which you can see from the city as well. We went to the top and as you can see, there is snow on it. In fact, you can ski on the mountain all year long. Right behind me where this picture is taken is a famous lodge called the Timberline Lodge. For those of you who have seen the movie the Shining, this is the lodge you see at the beginning. Only the outside is shown. The inside was filmed somewhere else.

I think the most interesting thing I learned on the trip was that the name of the city of Portland came from a coin toss. Apparently a person from Portland, ME and Boston, MA were deciding on the name and they flipped a coin to see what it should be. Obviously Boston did not win, but they did make it to the next round of the NBA playoffs.

4 comments:

Anonymous said...

We are happy that your trip was successful. We are also thrilled that they are trying to standardize the testing. We are all grateful for Dr. Druker. Love
Mom and Dad

Annie - Steven's mom said...

Hi Jon
It's always so good to hear the peace in people after a visit with Dr Druker and Carolyn.

We really enjoyed the area surrounding Portland and the coast when we were out there. That beach is lovely - I can almost smell it!

We have a kit sent out from OHSU a few days before Steven has his blood drawn for his PCR at a local lab. He then overnights it back to OHSU and the wait begins :) - all covered by insurance which is really good too. It's been really comforting to know that the blood is tested in the same lab, and at one of the best too.

Well done on a wonderful drop in PCR - its good to see you doing so well!

love and light to you all
Annie
Steven's mom
http://livingwithcml.blogspot.com

Bill Koconis said...

Hi Jon,

What a great opportunity for you to meet with Dr. Druker again. I'm glad you were able to spend some quality vacation time out there as well. Your blogs continue to help me relay important information (like the CML blood work)to our other patients and healthcare providers here at the LLS. Thanks for sharing and welcome home!

Best,
Bill Koconis

lbailes said...

I see you went to the Japanese Garden - I love that place! Dr. Druker wanted me to send my blood out to Portland as well, but my doctor gave me some good reasons for why it wasn't worth it. On top of that, first time I tried to do it, no lab would draw my blood and mix it with anything. So I had to get my local doctor to do it. And then I shipped the blood.... and then they couldn't run the test on it for some reason. It was a bad sample. So I would have to do it again.... and spend another co-pay for the doctor to draw my blood. Too much of a hassle. My local doc makes sure it goes to the same lab every time, so I don't really have to worry about that at least!