East coast second opinion for SLL?: Hi all New... - CLL Support

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East coast second opinion for SLL?

Njsailorgirl
Njsailorgirl
14 Replies

Hi all

New here and finding the posts supportive.

Dia in 2010 on W&W here in MD at Johns Hopkins. Now a patient at GBMC in Townson MD. Tried Ibrutinib until I was hospitalized w pneumonia. Immediately taken off. Now on R&B cycle 5 done last week. Feeling crummy, stiff and worsened neuropathy.

Looking for a second opinion at a renowned cancer center. Need recommendations, name of SLL/CLL specialist etc thanks.

14 Replies
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Luckyliss

I just asked the same question for nyc Tri state area

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TimHB

I saw Dr Jeffrey Barnes at Mass General who was wonderful.

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Njsailorgirl
Njsailorgirl
in reply to TimHB

Thanks for the recommendation.

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Cllcanada
CllcanadaTop Poster CURE Hero

NIH, Bethesda.. or Lombardi, Dr. Cheson...

Here is a current list

cllsociety.org/toolbox/cll-...

~chris

1 like
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Njsailorgirl

Thanks for the link. Very helpful.

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MsLockYourPosts

Furman at NY Pres. Weill Cornell or Lamanna at NY Pres. Columbia in NYC. NIH does trials only. If you aren't in treatment their CLL Natural History Study is great There are several videos of specialists alone or on panels which would give you a feeling for personalities, etc. Onclive has some good ones.

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newyork8

Of course Keating or Weirda MD Anderson. Chanan-Khan Mayo Jacksonville.

1 like
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Eagle5327

Dr Bruce Cheson at Lombardi Cancer Center located at Georgetown University in Washington DC. He’s one of the very best and accepts new patients, even if only for a second opinion. He’s very experienced with patients having difficulties with treatment.

Best of good luck to you! Super glad you have the wisdom to get a second opinion.

Geoff

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tomhenry2487

I would recommend either Dr. Danielle Brander at Duke Cancer Center or Dr. Javier Panilla at Moffitt, in Tampa. I have been treated by both and they are involved in clinical research in addition to treating patients. I'm currently at Moffitt because I accepted a job with them so I transferred my care here.

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TerryGrigsby

Dr. Eric Jacobsen at Dana Farber Cancer Institute, Boston, MA

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Njsailorgirl

Thanks

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SouthFloridaLady

Dr. Jennifer Brown, MD, PhD at the Dana Farber in Boston. She is the director of the department. Google her.

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shoshanaz

I'm seeing Douglas Gladstone at Hopkins, am in the NIH "history" study (apply for that if you have not already) and went for a second opinion with Dr. Davids in Boston. (Also went to a hematologist at Sinai (Lifebridge) for a while. Did you not like Hopkins? I'd be interested in hearing your take on it.

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Njsailorgirl

Long story at JH. Got tired of care by Gladstone’s fellows. Bad experience with DrG. Too. Now at GBMC w Dr Chaudhry.

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