I live at high altitude 9500 feet, and have developed other medical issues that require me to move to lower elevation. Don't know yet if I can to move down just to my nearest city 5000 feet or will have to continue down much closer to sea level.
To try to resolve the worst of the altitude issue, as quickly as possible, I will travel around the west coast for as long as it takes to find out whether the problem can be solved by being at sea level. Also will be looking for locations to move.
I have had a difficult case of CLL, and have a good CLL specialist where I currently live. Any move means having to be close to an excellent facility and specialist who understands complicated cases.
Looking for recommendations for good CLL specialists along the West coast, Washington, Oregon and California. I have found a very minimal listing at the CLL society. There have to be more than are listed there!
Please advise if you know of good CLL specialists. Thank you.
The CLL Society cllsociety.org is your best source for a physician. There are people at the Fred Hutch Cancer Center in Seattle, Alexi Danilov at City of Hope in Southern California, at OHSU in Portland, and in Eugene at the Willamette Valley Cancer Center. Hope you find the right place.
I live in California and very happy with the CLL specialists at Stanford. There’s also Dr. Sharman in Eugene, Oregon, and I believe Dr. Pagel in Seattle. Any of the states you will like, though I’m being subjective here! 😊
Many of our members live some distance from their CLL expert and use a local hematologist or a good diagnostician GP for routine blood tests & diagnosing & treating the minor infections & side effects that plague us day to day. They then connect the two doctors on EPIC ( or whatever electronic health records system is used) and then visit the CLL expert once per year or only when treatment is imminent.
SNIP:"So who is on our team? Here are the absolute minimum requirements to bring our best game:
The World Expert: A CLL researcher/clinician who lives and breathes CLL, who will direct our overall strategy and who has access to the latest therapies and clinical trials. Our CLL Expert does not need to be local. He or she is our “second opinion”.
The Local Expert: A local, available, competent and communicative general hematologist/ oncologist who works well with our World Expert, is there for us in a crisis, handles and explains the day-to-day issues and co-ordinates the bulk of our care.
Dermatology, Primary Care, and Others: CLL patients are at higher risk for second cancers, especially of the skin, so it is critical to get age and gender appropriate cancer screening.
UCSD Moore’s Cancer Center, San Diego, CA have CLL Specialists. Dr. Edward Ball is a good one! Good luck with your search and finding a place that will suit your health needs!
Hello I am in Orange County CA and go to City of Hope Orange County Lennar Foundation Cancer. My Dr is Nissan TCHEKMEDYIAN and I am very pleased with his care. I have been treated in the past at Sloan Kettering, MD Anderson, Mount Sinai so I have good basis to compare.City of Hope has main campus in Duarte CA and they saved me from Chemotherapy many years ago.
There is Dr Stephen Spurgeon, Who is a CLL specialist at OHSU in Portland Oregon. He is my current specialist and am close to starting treatment with him.
UC Davis Comprehensive Cancer Center in Sacramento has an excellent program.
Summarized roughly from North to South:
Seattle WA, Fred Hutch Cancer Center, Pagel, Shadman
Portland OR, OHSU, Stephen Spurgeon
Eugene OR, Willamette Valley Cancer Center, Sharman
Chico CA, ERCCC, Sam Majz
Sacramento CA, UC Davis
Stanford CA
Southern California, Alexi Danilov City of Hope
LA CA, Kevin Kelly USC Norris
Orange County CA, City of Hope Lennar, Nissan Tchekmedyian
UCSD Moore, Edward Ball
A good start! Thank you!
I'll add that for our particular needs, cost of living is pertinent, and a few criteria for actual home. This means a house and some property, in an at least semi rural setting, not urban or suburban, not shoulder to shoulder with neighbors. Need excellent recreation, trails, etc. I am used to an hour drive to cancer care, and that is just fine going forward in a new location as well. First look, around an the Seattle area seems to fit most criteria more easily, but the weather/climate is a question... Some areas of California, I think may be too crowded and too expensive. Would love more input on these things as well as any more recommednations for Doctors/facilities.
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