Is now the time for a CLL Specialist?

[Guest guest]

I am new to this group. My father was diagnosed with CLL

three years ago. After a biopsy on Thursday and CT Scan on

Friday, docs are pretty certain he is going to need to start

treatment. He is currently seeing an oncologist /

hematologist, but I'm thinking he needs a CLL Specialist?

Do you agree? If so, how do I find the best CLL doc for my

father in Southern California? Where do I begin?? Thank

you so much for any help or guidance you can provide.

[Guest guest]

I have sent a private post about area doctors. You don't

mention what type of biopsy - was it a Bone Marrow Biopsy?

You also don't mention what labs he has had done. Before

considering any treatment he should probably at the very

least get a second opinion and make sure he has had the

appropriate blood work done.

Pat

[Guest guest]

Pat, Thank you all for your messages and your posts!

Wow! I love this group. You just helped me so much.

Unfortunately, the family is coming into this game late. My

father is a private man and has had this dx for at least

four years. His children have just learned about it since

the lymph node biopsy on Thursday, as we have no idea of

what tests he's had - and my mother can't be sure. All's

that I know is that over the years, his white cell counts

have gone up only minimally so he was feeling pretty safe -

hence, not wanting to worry the family. (His WBC is 59? -

up from 56 a year ago...I have no idea of what that means).

We also know he has never been anemic. I am trying to

determine the next best steps to help him at my mother's

request.

From your messages it would appear that we need to do the

following:

1. Get results back from lymph node biopsy? (What are we

looking for that a blood test couldn't tell us?)

2. Get results back from CT scan? (I think we are looking

for swelling of lymph nodes the docs can't feel and to make

sure it's not blocking anything important - anything else?)

3. Locate the best CLL specialist in OC/Southern California

and get a second opinion.

4. If he hasn't had one yet, get a flow cytrometry test

done.

5. Determine if he has had any testing for prognostic

indicators, such as FISH, IgVH, ZAP-70 and CD38. If not,

get those done.

6. Determine if a bone marrow test is necessary to at least

provide us with a benchmark of sorts.

My father is meeting with his oncologist tomorrow - so I'm

trying to get us organized for that. Again, thank you so

very, very much for all of your help. You gave me more info

in your responses than I had been able to uncover over the

past few days of research. Priceless help. Thank you,

thank you.