8 replies to this topic

[nadee546]

I live in Chicago--there are tons of practicing hematologists in the area. I tried calling individual hospitals but they were of no help.  We have so many hospitals and so many doctors I don't know where to start to find another one . thank you to anyone who has any knowledge on this subject.!!!!!

[donnadavis]

My oncologist referred me to the one I am going to. I'm sure any Dr. could do the same. They have for more resources than we do.

[nadee546]

well  I got my cml specialist from my oncologist. I would feel funny asking for another doctor because she adores him and i would feel un-greatfull. there has to be hundreds here but WHERE ARE THEYand HOW DO I FIND THEM?  Thank you

[Lisal]

Hi Nadee.

I go to Northwestern in Chicago.  They seen a hundred or so CML patients instead of the 1 or 2 my initial onc saw.  Even though they are a large teaching hospital and at times may not be as personable as a smaller practice, I definitely felt more comfortable with them.  The doc I saw there (Dr. Martin Tallman) was on the NCCN CML guidelines panel.  Although he recently went to Sloan-Kettering as chief of leukemia services, I see a doc who trained under him at Northwestern, Dr. Jessica Altman.  For those of you in that are in NY, Dr Tallman was very personable and I liked him alot.

Anyway, hope that helps.

[rct]

nadee546 wrote:

there has to be hundreds here but WHERE ARE THEYand HOW DO I FIND THEM?

In May we visited Druker out there on the other coast.  His words to us were that there are approximately 30 thousand CML'rs in America right now.  There are approximately 30 thousand accredited hematologist/oncologists in America right now.  That leaves one patient per doc on a good day.

We thought the same for a long time, we'd have to find the "specialist" that had all kindsa experience and knew all the ropes.  Even here schmack in the middle of the east coast we can't really find any "specialist", just some more and some less experienced.  Of course, they are doctors, they don't have to tell YOU anything, so you'll just have to take their word for it on their experience.

Good luck with it.

rct

[Trey]

The Specialist issue is more difficult than it might seem.  You said: "there has to be hundreds here" but in reality there may not even be one true CML Specialist in Chicago.  Oncologists spend 90% of their time dealing with breast, lung, and prostate cancers.  An Onc who is great at those may be useless for CML because it is so specialized.  The "Specialist" your current Onc recommends (and "adores" -- who cares about that??) is most likely unqualified to help you.  There are probably only a handful of true CML specialists in the U.S.  But if you want to get the right answers, you need to go to them (i.e., travel to where they are).  And you need to forget about hurting your Onc's feelings.  This is not social life; it is your life. 

If a person does not want to travel to a true CML Specialist, then there are also "Those Oncs Who Know More Than Average About CML".  I do not call them Specialists.  Make sure they are a dual qualified  Hematologist/Oncologist.  You could find one of those in Chicago or nearby. They can sometimes be helpful for some issues.

If it were me, and I really needed a specialist, I would go see a true CML Specialist -- someone like Dr Druker (OHSU), Dr Shah (UCSF), Dr Cortes or  Dr Kantarjian (MD Anderson), Dr Talpaz (U of Michigan), Dr Nimer (Sloan  Kettering).  There are a couple others (but not very many):

http://www.ohsu.edu/...bout-us/druker/

http://cancer.ucsf.e...e/shah_neil.php

http://faculty.mdand...ault.asp?SNID=0

http://faculty.mdand...ian/Default.asp

http://www.cancer.me...eadership.shtml

http://www.mskcc.org...rg/bios/134.cfm

[donnadavis]

I was totally surprised at how little my oncologist knew about CML. I have to admit I have never really dealt with the medical community mcuh in my life as I was always fairly healthy. When I started having problems this last week my onc. actually said " I am going to have to research what to do next." ( I researched where to go next!!!!!)  I asked how many people he had treated with CML and he said he none. Don't worry about hurting a Dr.'s feelings, it doesn't matter , you are responsible for your treatment when all is said and done, no one else.

[CMLMN]

Here is my experience on looking for a more knowledgeable doctor.  My sister called LLS and they recommended a clinic.  I called them and specifically asked for someone who knows about CML.  They scheduled an appointment.  I came to the appointment and had a horrible experience - very long wait, the doctor came in looked at my chart and said that she had to go back and review some notes; she came back half an hour later and said "obviously I don't know anything about CML but let me check with other doctors at the clinic".  I left the appointment almost crying.  However, she called me two weeks later and gave a name of the doctor who turned out to be very knowledgeable and spent an hour and a half talking to me and my husband and explaining things; he even drew some graphs.   

[CallMeLucky]

Hi Dee,

I used to live in Chicago (pre CML) but I recall some of the institutions there.  I did a little research and it seems like the University of Chicaog Medical Center might be a good place to check out.  You can do a search of physicians at the hospital based on specialty.  You can't search by CML, but you can search Hematology/Oncology.  From there you can look for the ones who specialize in Leukemia.  They have a number of physicians and their credentials look very impressive (most from top medical schools with long careers in research).  The one that stood out the most to me was Wendy Stock, MD.  I'm pasting her profile below along with the links to the hospitals website.  If I was still living in Chicago, I think this is where I would be going.

'Dr. Wendy Stock is an authority in the medical management of all  types of leukemia and myelodysplastic syndromes. She collaborates with  other oncologists around the world through the National Cancer Institute  and the Cancer and Leukemia Group B to help identify and develop better  approaches to chemotherapy and other cancer treatments.

Dr. Stock's laboratory focuses on studies to determine the clinical  significance of the molecular detection and monitoring of minimal  residual disease (MRD) states following treatment for leukemia and  lymphoma. The laboratory is a national reference laboratory for several  of these studies. Dr. Stock is also developing novel technology to  measure tyrosine kinase activity in leukemia cells as a method for  predicting response to treatment with novel targeted kinase inhibitors.

She serves on the editorial board of the Journal of Clinical  Oncology and has published papers and reviews in many esteemed  medical journals. She has also spoken at international and national  conferences on leukemia.'

I did some Google searches on her and it looks like she has published a number of papers on CML.

http://www.uchospitals.edu/specialties/cancer/leukemia/

http://www.uchospitals.edu/specialties/cancer/leukemia/our-team.html

http://www.uchospitals.edu/specialties/cancer/leukemia/why-choose-us.html

http://www.uchospitals.edu/physicians/index.html

http://www.uchospitals.edu/physicians/wendy-stock.html

Best of luck