Re: Re: cll diagnosed

[Guest guest]

Chuck - I also was diagnosed some time ago - 2002 . I had been telling

doctors for about 5 before that that something was wrong, so it was

almost a relief to have a diagnosis. At least I knew what I was

fighting. Other than initial treatment for kidney involvement I, also,

live a basically normal life - does anyone live a normal life? My

former principal's mother had CLL for most of her life and was able to

live a normal life well into her 90s. So, take a deep breath. Now is a

good time to start educating yourself.

Another good resource is the CLL booklet pit out by the Lymphoma

Research Foundation. Go to lymphoma.org/booklets. With both the

booklet and Cll Topics start with the information for beginners. A lot

of the more advanced stuff you may never need or it will be obsolete

and there will be new and better options.

Are you working with a hematologist? You will want to work with

someone very familiar with CLL and possibly get a consult with one of

the CLL specialists around the country. If you post your general

location people on the list can make suggestions based on their

experience. I would also recommend taking a recording device of some

kind to appointments. Especially while dealing with the initial shock

of diagnosis it's amazing how much we realize we have missed when

listening to a recording later. Some oncologists have a recorder and

tapes and put them on for you because they realize this.

Have you had labs done for your markers? People here can be very

helpful as far as explaining what they mean.

Pat

On 2/3/11, Kay Mackenzie <kay@...> wrote:

> Hello chuckchuck2365,

>

> Understand completely, as I went through quite a bit of

> anxiety myself, initially. Now it's not so bad. CLL is quite

> a complex disease with a lot of variables. Many of us have

> good quality of life for long periods, and long remissions

> once treatment is necessary. My quality of life is

> excellent, and I'm living life as usual, other than

> minimizing the risk of contracting infections (I carry hand

> sanitizer everywhere!).

>

> I suggest you read this good site:

> http://www.clltopics.org/Primer.htm

>

> Another forum I'd recommend is: http://www.cllforum.com/

>

> Also keep reading . There are lots of really

> smart CLL patients that write in and wonderful CLL

> specialists that answer our questions, and provide links to

> related information.

>

> Take care.

>

> Kay Mackenzie

> Diagnosed aged 54, July, 2009. Stage 1. Currently Watch & Wait.

>

[Guest guest]

Your in good hands with Dr Kipps.

Try and stay calm, I know it's hard after just being diagnosed. I have had

CLL for ten years and lead a normal life. With the new drugs in early trials

the future looks good to me.

Stay in touch with everyone on line everyone will be helpful.

Dave Tipton

>

[Guest guest]

Hello,

You havent given your name, but the thing to do is not worry about it.

My wife was diagnosed with CLL in 1997 and we are fighting it since then.

When she was first diagnosed, we met an Ayurvedic physician who helped us change

our diet, and subsequently met Prof Catovsky in London who looked after my wife

all these years and who eventually put us in touch with Prof Mackinnon for her

stem cell transplant.

The thing is to find a good CLL specialist, and get all the info.

CLL is manageable, but you have to keep at it.

This list and another we are on CLL@... is a lifeline so keep in

touch with others on the list.

Best wishes and be positive.

from Delhi

Wife diagnosed at age 43 with CLL in 1997

Ran the gamut of Chlorambucil, FR, FCR till 2008

Under Prof Catovsky's guidance.

Finally Ofatumumab in 2009.

SCT from sister in Nov 2009 at the Royal Free London

under Prof Mackinnon

High dose DLI in September 2010

Now chimerism test shows cells are mainly donor and CLL cells gone.

MRD test says no evidence of disease.

Now chronic GVHD of skin and mouth.

Started cyclosporin