CLL specialists in the US: I was diagnosed with... - CLL Support

CLL Support

22,370 members38,479 posts

CLL specialists in the US

MelioraDay profile image
9 Replies

I was diagnosed with CLL 13q14.3 deletion December 2012 at age 59. ALC stable since that time at 10-18 so on W&W and followed by a local community oncologist in the US. When the time comes for treatment, hopefully a long way off, I want to be seen by a leukemia specialist, preferably someone who deals exclusively with CLL. Travel is not an issue and can go anywhere in the US for care. Any recommendations/endorsements from the CLL community?

Written by
MelioraDay profile image
MelioraDay
To view profiles and participate in discussions please or .
Read more about...
9 Replies
Kwenda profile image
Kwenda

The ACOR.org forum maintains a list of recommended USA doctors who specialize in CLL.

Check the Help pages for information

Dick

Also 13q del and have been on CLL W&W since 2005.................

zevkalman profile image
zevkalman

I really like Dr. Rick Furman in NYC who is my CLL specialist. I also am on W&W and have about 5-8 ALC during the past four years.

Cllcanada profile image
CllcanadaTop Poster CURE Hero

Dr. Jeff Sharman, maintains a list of primarily clinical researchers...

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

The ACOR list is now on google Docs... [is that like Dr. Google ;-) ...running joke ]

docs.google.com/viewer?a=v&...

Saratoga profile image
Saratoga

U.S. Doctors..... We live in Saratoga Springs NY and had the choice to go to Sloan or Dana Farber in boston.. We chose. Boston and very happy we did. It is a very large research hospital we even considered going to MD Anderson in Texas which is supposed to be he best in country. We were able to get an appt within a week and have been dealing with this since April. My husband is very heathy and found out through a blood test and only symptom was very tired which we thought was the stressful job. He has Sll which is treated the same as Cll only difference is his is in lymph nodes with yours in bone marrow, I have learned a great deal over the past few months, if you have any questions, please feel free to call my cell (provided but deleted by Admin). I would be happy to guide you in any way. Cathy & Mark

MelioraDay profile image
MelioraDay in reply to Saratoga

Thank you Cathy! I grew up near Albany, NY so I know exactly where you are. Thank you for your kind response. I will be looking at Dana Farber and will give you a call if I have questions. You have been very helpful

AussieNeil profile image
AussieNeilAdministrator in reply to Saratoga

Cathy and Mark,

A concerned member rightly reported your reply because of their concern for your safety. You kindly included your personal phone number but for your own protection, that's not recommended, plus this post is visible to anyone on the internet, not just members of our HealthUnlocked community .

Members wishing to contact Cathy and Mark can do so via a PM and they can then decide whether to provide their contact details to you. If you aren't sure how to send a PM, reply here and I'll help.

The help pages for sending and viewing a PM are :

support.healthunlocked.com/...

and

support.healthunlocked.com/...

Neil

O-to-go profile image
O-to-go

I was diagnosed three years ago with CLL at age 72. Since I live in Florida, I am being seen by a CLL specialist at Moffitt Cancer Care and Research Center in Tampa, FL. I am on W&W even though my WBC is 135K. I have no other symptoms and feel good. My CLL specialist does not treat by numbers alone. I have been viewing HealthUnlocked for three years and decided to chime in. Olivia

lego4 profile image
lego4

I use Dr. Kanti Rai in New Hyde Park, NY. He is reknown for his involvement with CLL. The list by Dr. Sharman in one of the other replies calls him the Godfather of CLL.

CaptRon1976 profile image
CaptRon1976

Seems we have a few things in common. I diagnosed myself after a routine blood test went unnoticed. ALC was a little high, smudge cells present. Same deletion. Five years later ALC up to 60.

Retired physician in Maine.

You seem very literate in hematology. Are you a research scientist or self educated with this new motivation?

You may also like...

Moving. CLL Specialists on the west coast US, CA, OR, WA?

I have had a difficult case of CLL, and have a good CLL specialist where I currently live. Any move

Difference in a CLL specialist?

loads of folks recommending seeing a CLL specialist. A few questions: - What can a specialist tell...

Looking for CLL specialist in Pakistan.

diagnosed with CLL. He is in early stage of the disease. I am looking for a CLL Specialist in the...

CLL Specialists in PA

Can anyone recommend a CLL Specialist in PA? I would like to get a 2nd opinion from someone...

CLL Specialist in California

CLL Specialist in California needed. I live in Northern California so I’m looking for the closest...