Doctor recommendation pls

[Bethro]

Hi all. I'm a newbie... Been reading but not contributing for a couple months. I just want to say how impressed I am by this forum - all the detailed medical knowledge, friendly support and humor make me feel very hopeful. I feel (a little) lucky as i was diagnosed 16 years ago and am still in the watch and worry stage. My counts have been slowly and consistent rising, nodes and spleen slight enlarged. I knocked my numbers back about 10 years ago with a brief round of steroids because I was experiencing some pain, but that's been it. I've been seeing a fantastic hybrid type of hematologist/Internist since my diagnosis but he's retiring and I need to find a new go to doctor. I live in NJ and was wondering if any of you have any recommendations. I go to a CLL specialist (Dr. Kanti Rai) once a year, more if need be, but Im looking for a knowledgeable local doctor who will just run my numbers every 3 Mos or so. I feel like I have so many questions to ask all of you, but I should probably start with this one. Thank you!!

[Emcee1]

I too am in NJ. Being treated at Rutgers Cancer Institute by Dr Roger Strair. No issues with him or his team. They really take their time with me.

[Bethro in reply to Emcee1]

Thanks so much for the recommendation Emcee1, I def know of Dr. Strair as I've attended a few webinar or call in presentations that he's done. I plan on having a consult with him soon.

[Cllcanada Top Poster CURE Hero]

Dr. Rai has semi-retired you might touch base with his successor

feinsteininstitute.org/our-...

[Bethro in reply to Cllcanada]

Thanks for the heads up Cllcanada. I really like one of the nurses there so I plan on emailing her to discuss next steps. I appreciate your help!

[MsLockYourPosts Passed Volunteer]

I would start with Dr. Rai, or his successor, and work backwards. Often your specialist will know someone in your area who they would be comfortable working with. I would also tactfully bring up, with Dr. Rai, who he thinks you should see next. My doctor of 10 years, who is fantastic moved south a couple of years ago. I knew exactly who would replace her, with her blessing. Very different story when my nephrologist retired. Two complete fails before finding the right person.

[Bethro in reply to MsLockYourPosts]

Thanks for your input MsLockYourPosts, that makes a lot of sense. I heard back from Dr. Rai's office and he rec Dr Alan Skabnick at Hackensack so I'll be adding him to my list of consults. Thanks again for your help!

[lankisterguy Volunteer]

Hi Bethro,

Since you mention being in NJ, I would question the need to drive the extra time and distance to the middle of Long Island for your annual/2nd opinion with Dr. Rai, vs seeing one of the three top CLL experts in Manhattan. Dr. Furman (my doc) at Weill Cornell NY Presbyterian, Dr. Lamanna at Columbia NY Presbyterian or Dr. Mato at Memorial Sloan Kettering.

Then you could ask your new CLL expert to recommend a local doctor near where you live, to do the routine blood tests and deal with infections, minor symptoms etc. That doctor could be a GP or PCP but having a excellent diagnostician and someone willing to work closely with you and the CLL expert is the primary qualification you should look for.

Alternately The CLL Society has a list of patient recommended CLL experts here:

cllsociety.org/toolbox/cll-...

it lists these two doctors in New Jersey:

Alan Skarbnik, MD, Hackensack University Medical Center, Hackensack

jtcancercenter.org/physicia...

Roger Strair, MD, PhD, Rutgers Cancer Institute of New Jersey, New Brunswick

cinj.org/roger-strair-md-phd

Len

[Bethro in reply to lankisterguy]

Hi Lankisterguy - huge help, thank you for the links. It's incredibly nice to have people like you and others in the forum to make sense of all that's involved with CLL and cut through some of the clicking and reading and comparing that sucks up so many hours online. Drs. Skabnick and Strair have been rec to me by other drs and patients so I will def go see them. I really like Dr. Rai but It is certainly a journey to get out to Long Island so I will consider your NYC drs for sure! Thanks again!

[Luckyliss]

I’m in NJ as well and go to RCCA dr bruno Fang and have gone to Sloan to lymphoma specialist but bc of this site and cll society site am going to dr strair soon as he is the best in our area