DOES ANYONE KNOW THE TOP CLL SPECIALISTS ON LONG ISLAND?

[debdetermine58]

I WOULD GREATLY APPRECIATE YOUR FEEDBACK ON ANY LONG ISLAND DOCTORS WHO SPECIALISE IN CLL☺👨🏿‍⚕️👩‍⚕️. THANK YOU🤗 SO VERY MUCH, YOURS IN HEALTH, 🙋‍♀️ DEBBIE.

[cajunjeff]

Here is a list of some recognized Cll doctors in NY. Drs Lamanna and Furman are among the list who are very well known and who treat a number of folks on this forum. I would pick among those two if it were me and I lived in NY. I assume others on the list are good choices as well. Good luck. Getting a top specialist is a great idea and something I think proactively we can do that much improves our survival chances as well as our quality of life.

[debdetermine58 in reply to cajunjeff]

Thank You! So very much☺🙋‍♀️ I truly appreciate it!!!

[Carrievc]

Hi Debbie,

I live in NJ but go to Dr. Mato at Memorial Sloan Kettering. Awesome CLL specialist and is up to date on all the latest treatments.

[debdetermine58 in reply to Carrievc]

Thank you do very much Carrievc🙋‍♀️☺, I truly appreciate it!!!.

[cajunjeff in reply to debdetermine58]

I don’t see the link to the list I thought I put in my response. Here it is.

cllsociety.org/toolbox/cll-...

[Tommays56]

IMHP Dr Rai at Northwell Health is and excellent choice no matter were you live and one of the most convenient for Long Island

[debdetermine58 in reply to Tommays56]

Thank You so very much!!!☺🙋‍♀️Tommays56, I truly appreciate it!!!

[MsLockYourPosts Passed Volunteer in reply to Tommays56]

Dr. Rai is amazing! One of the "fathers of CLL". He will undoubtedly be retiring soon, so maybe not the best choice for someone looking to establish themself with a specialist. He would be great for a second opinion, and I suspect that he may have one or two up and coming specialists working with him.

[Newchallnge]

It’s worth a trip to the city for Dr. Lamanna, Mato or Furman! The best in the world!

[debdetermine58 in reply to Newchallnge]

Hi! Newchallnge, I heard they are awesome !!!🤗Thank You so very much!🤗 I am considering Dr. Rai in New Hyde Park for Now, I live in North Babylon, Long Island,NY. Debbie🙋‍♀️

[SusanBo in reply to debdetermine58]

Hi Debbie - We are a local chapter of the CLL Society Support Group that meets monthly at the Syosset Public Library. You can get input from so many folks who use all of the specialists in our area - our next meeting is March 12th. Let me know if you are interested.

[debdetermine58 in reply to SusanBo]

Hi! SusanBo. , thanks so much🤗, I truly appreciate it.

[MFThorses]

Hi Deb so glad to hear you seeking a specialist. That was great advice to me because my local hemo-onc wanted me to start treatment over a year ago with chemo. I see Dr Brown at Dana Farber and am still on W&W. Being 11Q unmuted chemo is not recommended.

[debdetermine58 in reply to MFThorses]

Hi!!!🙋‍♀️MFThorses, Yes, my Hemotologist is the Chief at Good Samitaritan Cancer Center, very nice. He briefed me if down the road theres always Chemo, immune therapy etc. Like yourself and many others Chemotherapy scares me 🙄. Some of my close friends had Chemo, they are better thank God. It took a toll on their bodies, they have bone loss, neuropathy, etc. So Glad you found a wonderful Doctor👨🏿‍⚕️👩‍⚕️at Dana Farber and on W&W. I was wondering what 11Q is ? Thanks so much🤗 Stay Healthy, your friend, Debbie🙋‍♀️.

[Ginajetta]

I lived on Long Island most of my life and then moved to FL. I was diagnosed in 2007 wuth CLL/SLL. In 2010 a dr in Florida wanted me to start treatment for Cll/Sll. I sought second opinion from dr Rai who said no to treatment and kept me on watch and wait. I am Igvh unmutated trisomy 12+ CD38 positive. I traveled back and forth to NY for checkups to see dr Rai and then in September 2018 started treatment with imbruvica. Once I started treatment I had to find doctor in Orlando so I could have doctor close to home. dr Rai is godfather of CLL. In September 2019 had gallbladder out along with lymph node next to gallbladder doctor in Orlando was perplexed on results and wanted to start different treatment. So flew up to see Dr Rai with all my medical results. It was a relief when he said you have had and still have atypical CLL and just stay on imbruvica. You definitely need to see specialist. He is close by I would recommend seeing him. But I have Heard many good things too about dr Lamana on this forum.

[debdetermine58 in reply to Ginajetta]

Hi'! 🙋‍♀️Ginajetta, Thank you so much for your honesty with your journey.🤗 I heard wonderful things about Dr.Rai. I'm so glad he helped you ❤, often other non-specialists etc. are more apt to suggest the usual Chemo etc. I hope to see him .😊. Take care, Your friend in Health, Debbie🙋‍♀️.

[lankisterguy Volunteer]

For those in the NYC area, there is a free half day educational forum next Saturday March 7 at Memorial Sloan Kettering- Upper East Side Manhattan.

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Agenda here: cllsociety.org/wp-content/u...

Register here: newyork2020.questionpro.com...

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If the links don't work, or you want to see a list of all educational forums try this one:

cllsociety.org/patient-educ...

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Len

[wizzard166]

If you live on Long Island, my advice is to seek out Dr. Anthony Mato at Sloan Kettering. The trip into Manhattan, depending on where you live on the Island, isnt too bad with the train. Sloan Kettering is one of the top three Cancer Centers in the USA and Dr Anthony Mato is the Director of their CLL Department.

I narrowed my search to both Sloan Kettering and Dana Farber in Boston, and I ended up choosing Dr Jennifer Brown the Director of CLL at Dana Farber. I live in Florida so both were going to be long and expensive trips; however, my belief is to seek out the best of the best if a person has the insurance that permits it and the funds to get there. A relatively short train trip is worth the few extra dollars to be under the care of one of the top CLL Specialists in the country.

[debdetermine58 in reply to wizzard166]

Thank you so very much 🤗🙋‍♀️ wizzard166, you are so right pick the Best!!!🤗 I heard wonderful things about the Doctors tio'😄😊🤗.Thank You! Debbie in Health🙋‍♀️.

[wizzard166 in reply to debdetermine58]

Happy to be of help. As you can see everyone loves their doctor, and that is because we have such fear with our illness, that a physician is going to represent our big hope to survive and get better. I'm sure many of the doctors each person mentions on this site are capable and hopefully caring people.

With that said part of my long life I was a Hospital Administrator, and for the last twenty something years a health and life agent with a focus today on Medicare. I know hospitals and I know doctors, and there are absolutely Tier Levels. Like medications have five Tier levels today, you could group doctors in any specialty area into multiple Tiers too. Just like if we love football, and indulge in fantasy, we know how to group thw running backs or wide receivers into Tier levels. Usually there are five at the top of an entire group, and sometimes three. And i mean the ultimate top Tier. In Cancer you might go MD Anderson, Dana Farber, Sloan Kettering, Johns Hopkins, Mayo Clinic. Then within each Center there are their top people. I eliminated MD Anderson because I wanted to stay on the East Coast. Between Sloan and Dana I chose Dana Farber because of Jennifer Brown. Anthony Mato at Sloan is right up there with her, but I went with the focus in Genetics and the lead person in the entire field in that area. In my opinion that is Dr. Jennifer Brown. I loved Mato too at Sloan, and you live in NY, so I'd seek him out and try to schedule in with Dr. Anthony Mato.

[ksteinberglewis]

I live in Miami but went to NY to see Dr Furman at Weill Cornell. He is excellent and came highly recommended

[debdetermine58 in reply to ksteinberglewis]

Wow, a little far! I heard they are wonderful❤. Thanks so much🤗, Your friend in Health❤🙋‍♀️🤗, Debbie.

[Catskillady]

Hello Debbie,

I have CLL for 13 years; my doctor is Dr. Kanti Rai. He is at Long Island Jewish hospital. He has been my doctor for 13 years. He is VERY well respected in the medical community. Not only can I praise him, his support team is always helpful as well.

I wish you good health!

Lili

[debdetermine58 in reply to Catskillady]

Hi ! 🙋‍♀️Lili, I plan to see him I saw wonderful reviews on him🤗.God Bless You !!! 😇+++❤, your friend in Health, Debbie🙋‍♀️

[conrad956]

My husband has been seeing for Dr. Lamanna for the past 11 years. She is an amazing doctor who has clinical trials. She is easy to talk to and very knowledgeable about CLL research. We made the right choice when we decided to use her as my husband's doctor.

[debdetermine58 in reply to conrad956]

Hi!!! conrad956, I heard she is wonderful too❤🤗. I'm so glad she was helpful and communicative 😊. Than you again, 🤗🙋‍♀️❤ Yours in Health, Debbie )

[Lavruch]

CLL Society provides a list of top CLL experts by location here: cllsociety.org/toolbox/cll-...

CLL Society also provides a free online second opinion from a CLL expert through the Expert Access Program here: cllsociety.org/cll-society-.... The inclusion criteria includes being based in the US , a diagnosis of CLL, and you are not currently seeing a top CLL doctor. Part of the program includes a release of your medical records for review by the CLL expert prior to the consultation.

If you would like to stay in touch about CLL-specific research, events, and local Support Groups, please join our mailing list at: cllsociety.org/newsletter-s....

We have a CLL Patient & Caregiver Support Group in Long Island, NY, information is here: cllsociety.org/venue/syosse....

Please feel free to reach out with any questions to [e-mail].

Sincerely,

Liza Avruch

Program Director

CLL Society

[debdetermine58]

Thank you so very much Liza🙋‍♀️🤗, I truly appreciate all the information. ❤. I will defintely look into all. Yours, in Health, 🙋‍♀️, Debbie.

[Nanny23]

Hi I read you are from north Babylon. So am I. God bless and good luck