CLL Specialist in Miami?

[lamboman]

I am moving from San Diego to Miami and I am looking for a specialist with the reputation and knowledge of Thomas Kipps, my current CLL master oncologist at UCSD More Cancer Center here in San Diego. Do you have any recommendation?

Thanks

[HopeME]

I’m sure you’ll get some answers here but if it were me I’d ask Dr Kipps who he might recommend. The CLL Specialist community is relatively small and the doctors all know one another.

Good luck,

Mark

[AussieNeil Administrator]

You've been very fortunate in having the care of Dr Kipps and I hope that our many members in Florida can help you find a suitable replacement.

I notice that you have posted unlocked, which while helping others find this community, does make you more likely to be identified as having CLL through an internet search, given you have posted with a personal avatar image.

You obviously know how to change your avatar image per: support.healthunlocked.com/... but if you wish to retain your personal avatar, you might want to lock your post as explained here:

healthunlocked.com/cllsuppo...

Neil

[lamboman in reply to AussieNeil]

Thanks. Actually I am now CLL free MRD- in blood and bone marrow after 15 month of the CAPTIVATE trial. 1 ½ year already. I just want to make sure I have the right people close by if I ever relapse

[jjaarons]

I live in Fort Lauderdale. There is no one really remarkable in this area. Dr Pinilla at the Moffit in Tampa is good. It’s a 4 hour drive but if you are looking for a specialist. He’s the one.

[Britam in reply to jjaarons]

I second that recommendation for Dr. Pinilla. He is my specialist and I travel 4.5 hours to see him. ( I also have a local hematologist/oncologist. )

[GMa27]

Yes Moffitt in Tampa- Dr. Pinilla. Unfortunately none in south FL.

I drove 4 hrs as well.

If your insurance doesn't cover the only other specialist is in Jacksonville at Mayo Clinic.

Welcome to FL !

Loved my vacation to San Diego!

💕

[Palmetto]

We were seeing Alvaro Alencar recommended by Jeff here and While we liked him he was not able to assist my husband when he had something in addition to the CLL Which was auto immune hemolytic anemia. We have since returned to our oncologist Dr. Peter Citron at Baptist Hospital and he has been very responsive with us this time upon our return husband was started on venclexta and gazyva combo therapy Although he is not listed as a CLL specialist he is extremely qualified in treating leukemia's. This week my husband was started on a regimen and after reviewing the bloodwork he has stopped venetoclax until we have bloodwork next week. He is willing to explore treatment options if necessary And I feel partly because of my input to him in regards to my husband's condition He has a heightened awareness of CLL and its treatment mechanisms. Husband has been under his care since 2016 and is doing very well but the advice from Healthunlocked has been invaluable Baptist Hospital Cancer Institute has partnered with Sloan Kettering so I think you can find someone there that should be able to handle your case well

[Kherl21]

Been seeing Dr Alencar and very happy with him. Have been on W&W 4 years. He is at UM in Miami and really the only CLL specialist here. Takes time with you. I do know of DrCitron as well and he has great reputation!

[EugeneL2]

I live in Florida. Dr. Pinilla is probably the best option in Florida. However, I fly to MD Anderson for a CLL specialist.

[Rafe]

Hi Lamborman, here's a link to a list of CLL Specialists in the US. It's updated pretty frequently. Best Wishes. cllsociety.org/toolbox/cll-...

[Justasheet1]

It will be impossible to replace Dr Kipps as he is top 5 in the world in my opinion but finding an alternative is possible.

Dr Alencar is who I used in Miami and also saw Dr Pinnilla at Moffit.

Your best bet will be to lower your standards and find someone who is good and will work with Dr Kipps.

Can you visit Dr Kipps annually?

Jeff

[Egypt58]

Hello. I was recently diagnosed with SLL/CLL and on W&W. I live in VA but my wife is a professor at Indiana University where the Simon Cancer Center is located. Does anyone in this group has an experience with such facility? and if so would recommend a SLL/CLL specialist there with good reputation?

[Radarrick]

Dr Joseph Rosenblatt at UM Sylvester Cancer Center was recommended by Sloan Kettering in New York

[bayside64 in reply to Radarrick]

The best!

[SouthFloridaLady]

I live about one hour north of Miami and saw Lizzos [sp] at Sylvester, Kahn at Mayo in Jacksonville and Pinnila at Moffitt in Tampa. Now I see an oncologist at the Cleveland Clinic In Weston, FL and travel to Boston to see Dr. Jennifer Brown, who is a CLL specialist.

Best wishes on your selection.

[bayside64]

Dr. Rosenblatt at UM. It is an NIH hospital.

[Radarrick in reply to bayside64]

Sylvester Cancer is South Florida's only NCI-Designated Cancer Center.

[bayside64 in reply to Radarrick]

You’re right.

[Radarrick in reply to bayside64]

Here is an 8 year old YouTube video interview of Dr Rosenblatt describing CLL at that time.

youtu.be/-kwAbRQrjV8(Not working as expected?)

[WinJ3]

It’s worth making at least one trip to Tampa to see Dr. Pinilla at Moffitt. I have Dr. Pinilla consult with my local hematologist on treatments.

Win

[lamboman]

Thanks to all of you for the recommendations.

[Buzzjacket]

Drs Kipps/Choi are my doctors and I was in same trial as you were with similar outstanding results. I live in Orange County and with COVID I am having zoom type appointments every six months. I wonder if Kipps/Choi would contInue to see you on a remote basis? It’s great to periodically discuss the latest in research and treatment options with Dr Choi.

[lamboman]

I love this duo and will miss them but I might fly back just to see them. I'm glad your result is as good as mine. We're so lucky.