CLL Specialists in PA

[CLL_Runner]

Can anyone recommend a CLL Specialist in PA? I would like to get a 2nd opinion from someone considered to be an expert in the field.

Thanks in advance!

[Jm954 Administrator]

Hiya, where is PA? Apologies for not knowing!

[CLL_Runner in reply to Jm954]

Sorry JM, I should have stated that I am in the Lehigh Valley (eastern PA) but willing to travel if necessary.

[tekusa]

I am thinking by stating PA, you mean Pennsylvania? If that is the case and you live near Philadelphia, might try Dr Mato at Abramson UofPenn. If you live near Pittsburgh, can try making a run to Columbus OH and see Dr. Byrd. I see both presently and on April 2015 got my second opinion from Dr. Byrd (OSU).

You might have seen the doctors list for CLL, but I will put the hyperlink below anyhow......

sites.google.com/site/cllli...

sites.google.com/site/acorc...

Best of luck!

[CLL_Runner in reply to tekusa]

Thanks tekusa, I am considering Dr. Mato in Philadelphia.

[lego4]

If you are willing to take a trip to Long Island, NY, I highly recommend Dr. Kanti Rai. [phone]. He is considered one of the best CLL doctors in the world!!!

[CLL_Runner in reply to lego4]

Thanks lego4. I will keep him in mind.

[MsLockYourPosts Passed Volunteer in reply to CLL_Runner]

Dr. Rai is world class and would be good for a consult. If you are looking for an ongoing specialist, consider age as well as expertise. I just went through replacing two major players on my medical team. It was hard.

[Cllcanada Top Poster CURE Hero in reply to MsLockYourPosts]

You would need to make inquires at Northwell Health, I was informed by a patient that Dr. Rai is not taking new patients, but there is a very active CLL program with a number of specialist.

[canadagoose]

If you are in western PA, John Byrd is in Columbus.

[CLL_Runner in reply to canadagoose]

Thanks canadagoose. Another poster also recommended Dr. Byrd. I will keep him in mind.

[Cllcanada Top Poster CURE Hero in reply to CLL_Runner]

There are a number of CLL specialist at OSU James...

[tekusa]

Another option might be to apply to the NIH Natural History Clinical Trial in Bethesday MD. They perform many tests to establish your baseline. I live near Reading PA and takes me 3 hours to drive there. Call or email Susan Soto for forms to apply. This desease is slow growing so despite taking a few months for NIH to resond to your application, you likely have time to wait for second opinion from NIH.

updates.clltopics.org/544-a...

clinicaltrials.gov/ct2/show...

[Lindab127]

Dr. Mato at University of Penn would be a good choice.

[Cathy31]

Hi, I'm also from the Lehigh Valley. I was diagnosed with cll/ sll seven years ago. My WBC just started to increase and I am also looking for a CLL specialist. Just wondering who you saw and how you're doing.

[CLL_Runner in reply to Cathy31]

Hi Cathy31, I have not seen a specialist yet. My family doctor referred me to a hematologist who diagnosed the CLL. I am on stage 0 watch and wait at this point. He wants to do bloodwork in 6 months, but I was not sure I wanted to wait that long. So I went back to my family doctor for follow-up. We did bloodwork again and my bilirubin counts were slightly high. She ordered an ultrasound which came back OK, but she wants to make sure the liver is OK so I am now scheduled for an MRI tomorrow. I had more bloodwork done this week for the MRI. I am also on a topical corticosteroid for alopecia arieta which appeared just before I was diagnosed with CLL. I am curious if my WBC go down at all because of this. Eventually I think I will be trying to visit Dr. Mato who several people have referred. Best of luck!

[Cathy31 in reply to CLL_Runner]

Hi CLL Runner, thank you for your reply. I made an appointment with Doctor Mato for September 20th. Thank you for the recommendation!