Advanced Member
Posted 08 January 2012 - 06:35 PM
...to oversee and guide your ongoing CML treatment, testing, and overall well-being -- who would it be?
I "picked" mine because he happens to be local (and I do like him so far, thank goodness), but I read and listen to various CML specialists around the country that really impress me. I hypothetically wonder whom I might select if I had the resources to travel anywhere I needed to in order to be overseen by "the best".
Thoughts folks?
Dan - Atlanta, GA
CML CP Diagnosed March 2011
Gleevec 400mg
Member
Posted 08 January 2012 - 08:18 PM
Dr. Brian Druker at OHSU in Portland Oregon. I live near Kent CT. and I fly to Oregon once a year. I do see a local oncologist who communicates with him in between visits. To me, it's a no brainer. He is the "father" of Gleevec and is so well educated on all of the drugs out there. He helped develop one of the most sensitive labs in the country which is a 4 log lab. He has an excellent manner and makes plenty of time for you during your visit. Love Love him.
Lynne Dagata
ldagata65@gmail.com
"Scar tissue is stronger than regular tissue. Realize the strength, move on" ~~ Henry Rollins
New Member
Posted 09 January 2012 - 12:08 AM
Dr. Michael Mauro at OHSU in Portland Oregon. I live in the midwest and have flown out to see Dr. Mauro and could not be more pleased with my experience with him. He is very informative, patient, and the first person I have met that is as passionate about CML as I am and he doesn't even have it. I felt he lived, breathed, and eats CML everyday and he is one of the doctors working for a cure. He works with Dr. Druker of course but Dr. Mauro from my understanding is more available for appointments and his primary focus is CML where I have heard that Dr. Druker is spending more time in the AML world these days.
On more thing to say is that Dr. Mauro's bed side manor was impressive, kind, and so patient. He was willing to see me on short notice on his day off mind you and spent over 3 plus hours with me talking about CML and my case in particular. When I saw him I was not in any kind of emergency just was at a decision point that I need an outside opinion and he offered exactly what I needed. He opened the invite for me to continue seeing him every 3 months out in Portland if I wanted to and responds to my emails whenever I send them to him.
Overall I was extremely impressed with OHSU and wished I lived closer because it would be a no-brainer to go for treatment there. I also can say confidently if my CML ever turns out to be not normal CML I will be on the first flight back out there.
Advanced Member
Posted 09 January 2012 - 10:57 AM
If you respond well to the drugs, you only need someone to request the tests and write the prescription. The TKI drugs do the real work. So most people will never need an answer to this question. Those who need a specialist are patients who have high risk factors.
If you need a specialist to steer your treatment, then there is probably not one best answer; but there are very few great CML specialists. But for me, it would be Dr Talpaz at Univ of Michigan.
New Member
Posted 11 January 2012 - 02:18 AM
I see Dr. Mauro at OHSU every 6 weeks. I live about 7 hours away. By far the best I have seen in my short 9 month battle with CML. Have had many complications with the drugs and my case seems to be a bit higher risk than most, so what Trey said is definitely accurate. He and Dr. Druker are who I would choose.
Marc
New Member
Posted 11 January 2012 - 03:12 AM
I also see Dr. Mauro (commute from Seattle area) , and I completely agree with everything said. Just an excellent example of what a doctor should aspire to be, I actually have to say I have never left OHSU and not felt that I received the best possible treatment all around. I was seen by Dr. Deininger (previously at OHSU and now in Salt Lake City) and he is also equal in his abilities and bed side manner, I don't mind getting a Biopsy by either doctor, they have a unique ability to entertain and carry on a conversation that makes you forget what they are doing. I would travel across the country if it meant that I could stay in their care.
New Member
Posted 11 January 2012 - 04:28 PM
I see Dr. Shah at UCSF and have been amazed by the care I get. He is compassionate and smart and really cares about his patients. (And, I credit him with saving my life, so I'm more than a little biased.) He's just an amazing human being.
Advanced Member
Posted 13 January 2012 - 07:10 PM
Hi Trey: I am so glad you said what you did because that is exatly how I feel with regard to testing and get the script.
After you have dealt with CML for a long period of time, you know what to look for yourself. I feel I need my Oncologist to do exactly that. I have my appointment next week for my 6 month check-up, and to get my results of my PCR.
I get my results and a copy for my file, and get her to write my scripts for my Gleevec and my next two blood tests. I go every 3 months for routine blood work and then at the 6 month I get the PCR.
I feel if there were any drastic changes that required a specialist, then I would go higher up on the ladder to one of the doctors we all talk about.
I just tell the newcomers to be sure they are seeing a doctor who deals with CML on a regular basis, and knows all the latest treatments.
Susan
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