In Portland, Oregon, the Oregon Health & Science University Cancer Center has been a site for trials of Gleevec and other drug treatments.
Here is the link to the main page of their website: http://www.ohsucancer.com/
The physicians who have lots of experience with GIST include:
Medical Oncologists
Dr. Heinrich
Charles Lopez, MD PhD
Surgeons
Kevin Billingsley, MD
Clifford Devenney, MD
....Oregon Health Science University Cancer Institute (OHSU) is one of the premier GIST treatment (and research) centers in the world .. and one of the top four in the USA. If your insurance would cover your going there .. even as a second opinion .. I'd keep that in mind.
We go to Dr. Lopez @ OHSU and he's wonderful. I hope he's not going anywhere or we'll have to move with him!
Please go ahead and post. He was very nice and made sure I got all my questions answered so that my husband and I understood and for the first time I felt like I understood about my condition and what treatment is out there for me. His staff was very helpful as well. Tempest...........
I wanted to share that I had my first appointment with a GIST specialist. His name is Michael C Heinrich, MD from Oregon Health and Science University.
He was very nice and took the time to answer all my questions and is willing to network with my local oncologist to make sure I get the treatment and care I need. My doctor is not a GIST specialist and it feels great to know that I have a specialist on my team. I found out that I have been taking iron supplements for my anemia but since I do not have a stomach or stomach acid to break down the iron pills it is not helping with my iron count. He suggested that getting an iron infusion would be a better route for me to get my levels up and help with my fatigue. I plan to see him again in 4 months to go over my scans, my lab work, and a possible blood level to check on medication level in my system.
My husband and I also stayed the night at a great hotel called Comfort Suites-SW Portland. It offered free secure parking, free breakfast bar and rooms that offered free wireless, microwave oven, refrigerator and coffee bar. It has an indoor pool and spa, fitness room and it has security cameras through out the hotel. If you call the hotel directly and let them know that you have an appointment at OHSU you can get a discount. It only cost us 84.38 a night for two adults with two queen size beds. We plan to stay there again when we return for our next visit. It is close to the hospital as well which is nice when you are not from the area.
It was also a time that we had a chance to have dinner with others in the area that has GIST, who we meet for the first time in May during a GSI grant presentation. We are lucky to have a extended family in Portland who is on our journey and lucky to have friends like Tim and Gail Mansfield who set up the dinner for us at Red Robin near our hotel after my appointment with Dr. Heinrich, so that I could share the appointment and information with them. Tempest from Washington State