South Florida resources??: CLL for a year... - CLL Support

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South Florida resources??

Kherl21 profile image
10 Replies

CLL for a year, learning lots from this site, note the importance of seeing CLL specialist but there seems to be very few resources here in south Florida! Anyone have any suggestions? Only one on CLL site? Also plan on going to Dana Farber as have contacts there!

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Kherl21 profile image
Kherl21
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10 Replies
Cllcanada profile image
CllcanadaTop Poster CURE Hero

Very true, its always been like that...which is strange considering the population age demographics.

You are fairly limited to The Moffitt or The Mayo in Jacksonville.

~chris

Justasheet1 profile image
Justasheet1

I live in Palm Beach and see Dr Alvaro Alencar at University of Miami Sylvester Cancer Center. I followed him over from Memorial Hollywood hospital. He's young and highly engaged with research of CLL.

I highly recommend him but do agree clinical trials are sorely lacking.

The best of both worlds would be to use them both. One local and one for consultations.

Jeff

Kherl21 profile image
Kherl21 in reply to Justasheet1

Thanks! Was going to try to see him! Good to hear your opinion! Does he only see patients in Miami or come to the other locations??

Justasheet1 profile image
Justasheet1

He only works out of Miami but scans can be done at their other locations in Broward county.

He is phenomenal at staying connected answering your emails even on his travels. He attends all CLL conferences and works in the lab as well.

I also am established at Moffit with Dr Pinella in case of the need of a clinical trial where they seem to be the only game in town for Florida.

Jeff

mgh348 profile image
mgh348

I am in a clinical trial at Mayo in Jacksonville. I think enrollment is closed, and don't know what other trials might be available. I see Dr. Asher Chanan-Khan. He and his staff are great.

Justasheet1 profile image
Justasheet1 in reply to mgh348

MGH,

I always leave them out. My insurance won't cover me to go there.

On a sidenote, I heard Dr. Khan is leaving? Is that true?

Jeff

mgh348 profile image
mgh348 in reply to Justasheet1

Don't know. I'll have to find out. Thanks for letting me know what you heard.

Maxine

newyork8 profile image
newyork8

There is a doc at Boca Raton and Deerfield. Both females I believe but cant remember names. I think ACCOR list has them. No personal experience but they are doing trials on TG drugs.

Annaryp profile image
Annaryp

The other option in Florida cancer specialists. Spouse 12 yrs ww before becoming seriously symptomatic. Referred to fcs and accepted into acp 196 clinical trial. Amazing drs. Amazing staff. We use center in Venice. We tried the obvious moffit and others before finding fcs. Our experience with moffit was a nightmare btw. More or less one size fits all attitude and total disregard for patient input.

SunnyCA profile image
SunnyCA

Mayo in Jacksonville. I go to the Mayo Clinic in Arizona and am very happy with my care.

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