Is There an excellent CLL center in the USA?

[kathypawpaw]

Has anyone out there found a CLL cancer center in the USA that is excellent? With so much information to read through this seems like a great question to ask at the start. Wondering where to go for a second opinion.

Thanks,

Kathy

[AussieNeil Partner Administrator]

Kathy, you are spoilt for choice, depending on how far you wish to travel! Considering it's a second opinion, that's probably less of an issue for you though.

The CLL ACOR site maintains a list of doctors recommended for their CLL expertise by CLL patients and that's most easily accessed via Dr Sharman's site:

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

It used to be that the different CLL centres of expertise in the USA had their pet chemo treatments, i.e. where you went strongly influenced your treatment recommendation. Now the differentiation seems to be sites/specialists that prefer to total avoid chemo while others are saying that chemo has its place for individuals fit enough to tolerate it. I mention this so that you are not surprised if you get different (but equally valid) recommendations.

If you care to say what state or even roughly where you live in the USA, you are likely to get specific feedback from patients attending a CLL centre of excellence near you, as USA members comprise 45% of this community.

Neil

[andrewschorr]

Wow! Please see Patientpower.info to get oriented, especially about CLL in the US. However, my favorite centers are: MD Anderson, Ohio State, Cornell-Weill, UCSD, Dana-Farber, Columbia Univ., U of Penn, Northwestern, City of Hope, UCSF, Stanford, Seattle Cancer Care Alliance, Moffitt, Mayo Clinic to name several. Write me and I can help you more with docs.

[shazie in reply to andrewschorr]

Hi Andrew,

Can you recommend a specialist at UCSF? I live in San Francisco.

Thanks.

Shazie

[andrewschorr in reply to shazie]

I don't know the CLL specialist there but if you call the office of Dr. Tom Martin at UCSF, a hem specialist, they can direct you. At Stanford there's Steven Coutre.

[shazie in reply to andrewschorr]

Thank you Andrew for your reply.

[teb0513 in reply to andrewschorr]

I would love to know if Emory - Winship Cancer Institute is on your list! Thanks for this post! teb0513

[Cllcanada Top Poster CURE Hero in reply to teb0513]

Emory ... Dr. Christopher Flowers

med.emory.edu/hemonc/facult...

[Tovtovtov in reply to teb0513]

Dr. Leonard Heffner at Winship is excellent!

[gsuatez in reply to andrewschorr]

I see Dr. Gladstone at John Hopkins. Could you recommend someone in Maryland?

[foxglove123 in reply to andrewschorr]

Since this was posted 6 years ago I am sure things have changed somewhat with centers and specialist. I wonder if there is a CLL specialist in the San Francisco Bay area, East Bay area that you have heard good reports about. I am new to CLL and trying to navigate my way around the best course of action. I have looked on the suggested list as well. It looks like you have many options in San Diego. Thank you

[Cllcanada Top Poster CURE Hero]

Here is a list of CLL/NHL specialists... good starting point

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

[kathypawpaw in reply to Cllcanada]

I am so grateful to you for this post and it's wealth of knowledge. I think with cancer more than any other disease you have to TRY to figure things out before you choose treatments . The more I read the more I realize I need to read more. In general anything that tears the body down seems like a bad choice to me. That is why this research is so important. THANKS SO MUCH FOR YOUR HELP.

[MsLockYourPosts Passed Volunteer in reply to kathypawpaw]

Dr. Coutre at Stanford would be your nearest specialist. If traveling farther isn't an issue Dr. Sharman in Oregon or Dr. Kipps in San Diego. Also Dr. O'Brian in Irvine, formerly at MD Anderson in Texas.

[shazie in reply to MsLockYourPosts]

Thank you.

Shazie

[dkay]

Also, the National Institutes of Health in MD if you are eligible and accepted into their natural history study or a treatment clinical trial, and Dana Farber iin Boston, MA.

[MsLockYourPosts Passed Volunteer in reply to dkay]

The NIH study is a fabulous opportunity for those in the U.S. !

[francc]

NIH is a national treasure! Their website is a wonderful source of all health information including pages dedicated to all the clinical trials in the U.S.

[Tovtovtov]

As a patient at MD Anderson for the last 5 1/2 years outstanding care there.

[Catskillady]

I have been treated by Dr Kanti Rai since diagnosis in 2006. He is the head of the CLL Research department at Long Island Jewish Hospital in New Hyde Park, NY. It is about a 30 minute drive from midtown Manhattan. You may find Dr Rai's name familiar as he is responsible for the Rai staging system. I very rarely recommend a physician but I can very confidently endorse Dr Rai. I am a retired Registered Nurse with 47 years of experience as well as a very happy patient of Dr Rai. His Physicians Assistants and the other doctor in the practice, Dr Barrientos are also very knowledgeable and supportive, the entire practice is great!

[sallylou]

Well I see Dr. Fu at the Cleveland Clinic in Weston , Florida. I'm very happy with her. I started with Dr. Hirsch at Memorial hospital west, in Pembroke Pines, Florida. There's a great cancer center there. I liked him but I had to change when I got my new health insurance.

[Janedonohue]

I see Dr. Rick Furman at Weill Cornell. He is extremely knowledgeable and very easy to talk to. I have enormous confidence in him. Good Luck.

[andrewschorr]

Did you tell us where in the US you had interest? There are many good centers.

[SouthFloridaLady]

Jennifer Brown MD, PhD, at the Dana Farber is an excellent choice. I have seen Dr. Brown, and been to Dr. Sharman's choices at the Mayo in Jacksonville, Florida, and Sylvester Cancer Center, Miami, and I have seen Dr. Fu at the Cleveland Clinic in Florida. It was interesting to me that Dr. Fu's opinion differed from those of the CLL specialists. Very important to have good insurance, and more than one opinion! IMHO I have heard that Dr. Kanti Rai is the 'guru' of CLL.