Just learned my son has CLL - now what?

[Guest guest]

Yesterday, my son told me the doctor told him he has Chronic

Lymphocytic Leukemia. They took two tests and now he is

scheduled to see a specialist. He will be 38 next Saturday.

Any advice? I don't know what to do to help or where to go

to learn more. I've been reading online and found that there

are two types and basically the length of his life depends

on which type he has. Wouldn't they already know what type

he has or do they need more tests?

I'm lost and scared. I had my son when I was 15 years old,

my second son at 16. They have been my entire life. How do I

help him fight this?

Barbara

[Guest guest]

Hello Barbara,

I'm sorry to hear about your son.

The first thing to do is not panic. I know it's hard right

now but you/he has time.

Don't pay too much attention to the charts showing

longevity, those stats were compiled years ago and don't

apply so much to what they know today.

Here are three great web pages:

http://www.clltopics.org

http://www.cllinfogroup.org

http://cllcanada.ca/2010/index.htm

All three site are excellent sources of information

Dave Tipton age 67

I've had cll for 10 years dx 2001, Completed FCR in 2005,

currently on Rituxan maintenance, my quality of life is

excellent.

[Guest guest]

Barbara-

I am so sorry to hear this news. As a caregiver of a

CLL'er, I know the helpless feelings that are running wild

in your body right now. I remember feeling as if the floor

actually was " rocking " when my husband was dx with CLL. My

heart started beating faster and faster and I was just lost

in chaos.

There is no good cancer to get. One of the better things

about CLL is that it is a slower moving leukemia. Where

other cancer cells multiply like crazy to take over the

blood, CLL is made of cancer cells that don't know how to

die. So, the movement is slower, thus the name chronic.

Unbelievable new treatments are appearing annually for CLL.

This is so very exciting for just dx patient's. Younger

patient's have better stamina with treatment and are

basically just healthier than the older patient's. All of

this is a positive for your son, even with the negativity of

having cancer.

I know your heart is breaking today. I would be surprised

if it wasn't. Just know that with all the genetic break

throughs in science and all the work to find THE CURE for

CLL, your son will most likely reap the benefits of the age

we live in by actually being part of the cure for CLL. I

have hope that my husband will be part of that group also.

Lou Park

[Guest guest]

Hi Barbara -

There was a recent discussion in July 2011 with the subject

" Newly Diagnosed " . Here are two comprehensive responses that

should give you a greater understanding of CLL:

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Hope this helps - Patti K

Barbara wrote:

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