Looking for CLL Specialist

[farkmark]

I am a new CLL diagnosis. I have been told by others with CLL that I must have a CLL specialist as part of my team. In trying to search for this I find providers who have CLL listed as an area of specialty but not exclusively. Besides the CLL society is there another nationally published list of CLL specialist to look at.

[cajunjeff]

When I think of a typical Cll specialist, I think of a hematologist at a major cancer center whose patients are comprised almost exclusively of people with cll.

You can pick just about any major cancer center near you and visit their website. Look for the leukemia dept on the website and look among the biographies of those doctors for doctors who specialize in cll.

The majority of top cll doctors will also be affiliated with any number of clinical studies involving emerging and existing cll meds. I have had three cll doctors at MD Anderson and all three were heavily involved in cll research and trials.

There are, of course, some doctors outside of major centers who specialize as well, but in my experience most top cll specialists are at major cancer centers.

Here is a list of some top cancer facilities in the US, it’s by no means an exclusive list. Look for the one closest to you and check out the biographies of the leukemia doctors.

If you find a doctor you like, you can ask on here is anyone is using him or her, and its even money someone on here has experience with that doctor.

epiconcologystaffing.com/th...

[HopeME]

I think cajunjeff has given you good advice. I assume you are in the US? Generally CLL Specialists reside at teaching hospitals in major cities. If you are not located near a major city you can become a patient of a local oncologist to handle most of your needs and also find a specialist at a teaching hospital whom you visit annually or when treatment decisions are needed to be made. This tandem approach works well for many patients.

Working together, a CLL specialist may order quarterly blood draws and infusions that can happen locally using the general oncologist’s resources and be reported back to the CLL Specialist for monitoring.

I’d suggest you complete your profile with some general information. For example: I was diagnosed on such and such a date, I live in the western part of the US,, I am 65 years old, etc. This information enables readers who are trying to offer suggestions to have an idea of your situation and tailor responses accordingly.

Good Luck,

Mark

[Nucleusman]

which country and town?

[Jujy]

Agree with others -- my husband's doctor is not on a "list." But he is at a major cancer center (Dana Farber) in their Lymphoma/Leukemia unit and has done CLL research. He has been great.

Edited to mention - now that I look at his profile ... he is not listed as CLL-only. Here from the DFCI website:

Clinical Interests

Autologous stem cell transplant, CAR T-cell therapy, Chronic lymphocytic leukemia, Lymphoma (Hodgkin and Non-Hodgkin)

Diseases Treated

Leukemia, Chronic Lymphocytic (CLL)

Lymphoma, Hodgkin

Lymphoma, Non-Hodgkin

[BeckyLUSA]

Not only look at the top cancer facilities, it look at your local cancer facilities and then check where their specialists trained. I found a doc who did his specialty training at MD Anderson. Check out their credentials to see where they trained and who they trained under. Not all the good docs stay at the top 10 cancer centers!

[lankisterguy Volunteer]

Hi farkmark,

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There are other lists of CLL expert doctors see: sites.google.com/site/cllli...

sites.google.com/site/acorc...

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& Dr Sharman's list

cll-nhl.com/p/cllnhl-doctor...

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Len

[skipro]

Hi

If you log into the CLLSociety web site, you can find a list of CLL specialists in your area.

Good luck and God bless on this new journey.

Ski pro