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?
CLL specialists in the US: I was diagnosed with... - CLL Support
The ACOR.org forum maintains a list of recommended USA doctors who specialize in CLL.
Check the Help pages for information
Also 13q del and have been on CLL W&W since 2005.................
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.
Dr. Jeff Sharman, maintains a list of primarily clinical researchers...
The ACOR list is now on google Docs... [is that like Dr. Google ...running joke ]
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
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
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.
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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
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.
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?
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