Re: Newly Diagnosed/Scared but hopeful

[Guest guest]

,

CT scans are not useful with CLL - perhaps one of the

doctors on the list can comment. It is possible that you

will have a very slow progressing disease - you'll find

that out as your doctor monitors your blood levels and any

potential node and spleen involvement. Until such time that

you are progressing, there is really no need to see a CLL

specialist. It is only when it looks like you may need

treatment that you will need to do that.

Ron

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[Guest guest]

, I think there are several schools of thought here,

depending on symptoms and initial disease presentation.

A CT scan on diagnosis might detect hidden nodes (SLL?) and

give a baseline for later, hopefully much later.

And, I'd get an expert from day 1, even if you mainly see

your local guy. It's great to build a team that is watching

you so you can feel comfortable and move on with your life.

In fact, I highly recommend applying for the NIH (National

Institute of Health) Natural History Study of CLL in

Untreated Patients. There you will be studied by a number

of experts who will keep a great eye on you. Here is a link

http://clinicaltrials.gov/ct2/show/NCT00923507?term=natural+history+cll & rank=1

or http://tinyurl.com/4g2bpzx

You can contact me via email for more contact info for the study if you are

interested.

Lynn

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[Guest guest]

,

I agree with Lynn. Find a specialist now.

I've also had CAT scans to identify nodes in my abdomen.

They could become large without you realizing it.

The very best to you.

[Guest guest]

Tom:

Thanks so much for your good wishes. I'm truly heartened and encouraged by

reading the responses I've received. I had a CT scan today and I see the doctor

next week. I guess he'll give me his opinion of where I stand and what I need

to do or not do. I'm pleased to know that you have experienced such a good

response to your treatment. It's not a great place to be, but I'm glad I'm not

alone. Thanks again.

>

> Fortunately, CLL can be managed.

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