CLL Secialist bear Boynton Beach FL?

[2tas]

Anyone know of a CLL Specialist near Boynton Beach FL? I was told U of Miami but I’d like to hear of first hand experience, thnx

[cllady01 Former Volunteer]

The following list has one Dr. listed in West Palm Beach---you can click on it and read about the Dr. you may still hear from person who have had experience with that Dr. or others in that specific area of Florida

cllsociety.org/toolbox/cll-...

[PalmettoMiami in reply to cllady01]

We are very pleased after switching to Dr. Alvaro Alencar at Sylvester at University of Miami. I believe Jeff also saw him when he lived in Florida. He has a clear understanding of CLL and did not jump to conclusions like our other hematologist/oncologist often did.

Of course there is always Moffit in Tampa.

[Kherl21 in reply to PalmettoMiami]

I also see dr Alencar and am very happy! Very different approach than one who is not CLL specialist!

[GMa27 in reply to cllady01]

Heard the one in West Palm was not an expert. List is confusing in Florida. ☹️

[cllady01 Former Volunteer in reply to GMa27]

Drs. come and go a lot, too. I have tried to look up credentials for some of those on that list and have found they are no longer in that slot. That is why I suggest anyone look into their online information.

[mja511]

I go to Dr. Drew at Holy Cross Hospital in Fort Lauderdale. Diagnosed in July 2015 with cll 17p del. Went to Sylvesters for second opinion, and Moffit for third, but liked Dr. Drew. FCR chemo did not work, so I've been on Imbruvica since Dec. 2015 with great results.

[Justasheet1]

There are no Cll Specialists near Boynton. You must travel and the only places in Florida that are comprehensive cancer centers are Moffit, Sylvester and Mayo.

There may be more but they won’t specialize in CLL. I saw both Dr Alencar at UM and Dr Pinnilla at Moffit. I used Dr Alencar as member mariposa said.

Jeff

[AlleyBoy]

Jupiter resident here and if you have a ppo go north. Nyc, New Jersey, etc... I never believed there was a difference but there is.

[GMa27 in reply to AlleyBoy]

Hey I live in Jupiter too! I see Dr. Reich in Jupiter. She is amazing. She sent me to Moffitt for second opinion when treatment time arrived after 12 year W&W. I also had contact with Dr. Byrd in Columbus at the James. Unfortunately only Moffitt / Tampa or Mayo in Jacksonville available for us in FL. My doc knew nothing about anyone in Miami.

Who do you see locally? I did my treatment in Jupiter after my second/third opinions. Luckily they all agreed! 16 months in remission.

I used to live in NJ. I have a friend in NJ that has SLL that goes to Sloane. I was actually disappointed in her care. Grew up thinking that place was invincible. It is good but as I said her experience was different. Are u on W&W or had treatment? 💕

[mikec11 in reply to GMa27]

I’m also in Jupiter and I’m curious as to where you go for inpatient care and Primary care. Thanks 🙏

[GMa27 in reply to mikec11]

Hi there! Small world. My hematologist oncologist is Dr. Elizabeth Reich by Leftovers/Carmine's restaurant. She does have a chemo infusion center in her office, lab that tests my blood immediately at appts. But I had my chemo at Jupiter Medical Center to be closely monitored. My family doctor is in Tequesta. Between the 2 of them, I am in good hands.

Who is your hematologist?

[mikec11 in reply to GMa27]

Thanks for the info. Mine is Dr. Abraham Scharzberg. He knows Dr. Jennifer Brown from Dania Farber. I’m planning on using her as my CLL Specialist. I’m shopping for a good internist who sees patients in JMH. Lots of the Drs in the area now farm out inpatients. I’m old fashioned.

[GMa27 in reply to mikec11]

Yes agree about farming out!

Luckily my doctor is an old fashion type. Spends time with patients, calls after hours with results. Very personable and professional. Medical field has changed so much. I am old enough to remember my doctor coming to my house when I was very young. 💕

[craftmom]

My DH goes to MDAnderson and sees Dr. Wierda. He is doing well on a clinical trial of acalabrtinib for about 3 years after failing Ibrutinib due to side affects . Dr Thompson and Jains are also excellent. We live in Miami. My DH is a physician. Good luck and Happy holidays to you.

[GMa27]

My dad went to Dr. H. Gomolin at Lynn Cancer Institute. Offices in Delray & Boca. He had CLL 30 years and never needed treatment. Lived to 94. I live in Jupiter 35 min north of him so I use local hematologist. I went to Moffitt for second opinion. And consulted with Dr. Byrd in Ohio. My CLL pal in Boynton goes to Cleveland Clinic local and Dana Farber in Boston ( her family there). Goes once or twice a year for her expert back up.

We have a lunch group if u ever want to join us. From Stuart to FLL. We meet between Boynton and Palm Beach Gardens every other month.

My local hematologist said she was not familiar with anyone in Miami. She said she feels if I need another expert appt she would send me back to Moffitt.

Hopefully won't need it for long time. In remission 16 months. 💕

[DelrayDave]

2tas:

I go to the Lynn Cancer Center for hemotology and oncology on Linton Blvd. in Delray. They also have a bigger place in Boca. My hemonc (board certified in hematology, medical oncology, and, if I recall correctly, internal medicine) is Harold Richter (yes, he got jokes about the name and "transferrence" from his teachers). So far I have seen no reason to consult with a listed "CLL specialist." When I bring him articles, he knows about them. The people at the Center are gracious and the nurses get a vein the first time. The Center is maybe 5 to 15 minutes from you. Of course, if your own case is especially unusual, an academic research specialist may be better.

Good luck.

David

[GMa27 in reply to DelrayDave]

That is where my Dad went. Good Center.

[Cllmax]

My husband goes to specialist at Dana Farber in Boston. Locally he goes to Dr. Spencer Bachow at Lynn Cancer Institute. He’s very familiar with CLL and stays in touch with DF. We like him very much. I suggest that you see a specialist outside of Florida. Sylvester (UM) was awful.

[2tas in reply to Cllmax]

What was (UM) awful?

[Cllmax in reply to 2tas]

Supposedly Dr was CLL specialist - not!

Not aware of clinical trials. Visits lasted a few minutes. We got information from the nurse who was very good. We found out about clinical trials from DF. Finally husband got on Ibrutinib trial at UM- very little interest from Dr. He got very sick. It’s a world of difference when you see a true CLL specialist.

[GMa27 in reply to Cllmax]

Yes heard Sylvester is not CLL experts. Only ones in FL are Moffitt (Tampa) and Mayo (JAX).

Wish we had one in Palm Beach or Broward County.

[Justasheet1 in reply to Cllmax]

Climax,

Dr Alencar is first rate. He is patient, answering all your questions and extremely knowledgeable. He was my Doc for 6 years. I also hardly can believe that it was he who you saw.

I’m sorry that Sylvester wasn’t for you.

Jeff

[PalmettoMiami]

I don't know who you saw at Sylvester but I do not believe it was Dr. Alencar. We are never seen by a "nurse". He is well aware of all clinical trials and indications and contraindications of treatment. He is considered a CLL expert. Check the list of recommended specialists on the CLL website. He is either in his mid to late 30's I would guess and has a very firm grasp of how and when to treatment CLL. Our other doctor never felt husband needed IVIG even though he had a severe lung infection back in April. Never rechecked levels. When he jumped to conclusion that treatment was again needed and it turned out to be a false alarm we switched to Sylvester. We had consulted with Alencar but now made him primary oncologist. Since starting on IVIG which was definitely needed with all 3 levels severely low, even long term chronic sinus symptoms have abated. I hardly believe Sylvester is "awful".

[Cllmax in reply to PalmettoMiami]

Not the Dr we saw. Appointment wasn’t with nurse, but she would talk to us when Dr was done. It was a few years ago.