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The CLL Sand Box

jas1965
Posts: 6
Joined: Jul 2009

Hello to all
I am new to this site but open for discussions
I am 44 with CLL. Diag for the past 2-1/2 yrs.
We had it controlled but has now started moving again.

So headed into round number 2.
I know I will get through just have to think positve.
And have faith that higher powers are at work in your favor.

Take Care

JAS

tf168wife
Posts: 21
Joined: Mar 2009

Hi JAS,
I was recently diagnosed with CLL as well (8 months ago). I am Rai stage 1, Binet stage B, so just waiting and watching. You said you had it controlled - can I ask how? and then what happened? So you are going to start treatment?
I will be praying and thinking of you,
Wife

jas1965
Posts: 6
Joined: Jul 2009

Hey Wife,

You may ask - The more people know - The faster they actually find a cure.
That is very good you are in the watch and wait only phase.
For me I don't like doctors so it was very rare they found it.
I actually got hurt at work one day and they pulled Blood work.
After that the bottom fell out.

As for stages - Yes some docs still use that to measure.
I go to a teaching hospital and I am considered High Risk.
So I have bypassed the stages and my spleen is huge.
They will pull your Blood work and let you know what the WBC is.
Just so you have an idea - when they Diag me I was WBC at 407,000.
I held the record at the hospital for a walk in patient.

The first round for me was what they call FDR.
This is a Chemo mix that they think works best for the patient.
My main drug for me was Rituxan.

That batch was 3 days a week Mon, Tues, Wes, every 4 weeks for 6 months.
Not going to tell you it was fun because its not..
I can say I had higher powers on my side because I would get up from the
chair and go to work after..

Doctors could not believe I did so well.
Well that round put my WBC back down to about 5000
A good range to be in.

Then I was on the every 3 month check ups.
They would pull my Blood work and numbers came back fine.
Did that for about a Year and a half.
So I would skip an app here and there etc.

Well then I started not feeling the way I should
You know when something is not right.
So I went back in and they pulled the blood work.
and here we are...
Numbers back to 34000

So Doc said this means it is active again.
Well now I am on a Chemo called Campath.
I did the read ups and its seems to be pretty good as for side effects.
But you got to remember Chemo destroys the immune system.
So be careful.

Bottom line is we have a cancer that there is no cure for to date.
Doctors will buy you time. It is up to you how you choose to spend that time.

I personally will do the best for my wife and kids.
And make my peace with God.
I believe this life is only a class room to be used as a tool and
prep you for the next phase.

Take Care and God Bless

JAS

tf168wife
Posts: 21
Joined: Mar 2009

JAS,
Thanks for responding. Wow! Your WBC was astonomical!! Mine runs right around 25,000, swollen lymphnodes, but that's it. I feel good, just tired. Mine was found through routine bloodwork too - had some gall bladder issues. That was the least of my worries!
So you were in remission only a year and a half. Your so young, what about a bone marrow transplant?
The confusing part for me with having to wait is, I feel like I want to attack it and get rid of it! Before it damages my body, but I know chemo is not good for your body either. Hard to reconcile that you have to live with this cancer and let it work it's way through your body and destroy it, before you can make it better.
I thought I had a strong faith in God, but this has certainly put that to the test. I want to trust Him and put myself in His hands, it is just hard. Sometimes I want the control back!! (like I ever had it to begin with!) :)
You take care, and post anytime! I'll be thinking of you and praying for you and your family. I'm sure this is very difficult for them.
Be well,
Wife

Beths.
Posts: 4
Joined: Sep 2009

God understands that we try to take control. Sometimes I play tug of war w/ God but I feel he understands. This is a hard thing and your faith is bound to have many moments of weakness. He understands, he will never leave you nor forsake you. Love, Beth

Beths.
Posts: 4
Joined: Sep 2009

JAS, I love you. I miss you. You seem to have closed yourself off to your wife and family.
Please talk to us, spend time with us, let's do this together, please, Beth

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