New to CLL and Guide to CLL

[Guest guest]

Hi Crystal and ,

By now you have received several messages on what to do/what

to ask/what is available. Here is my contribution.

Was diagnosed in Dec 2005 and completed six monthly FCR

treatments in Dec 2009, with good response at age 66 - 67.

FCR (fludarabine, cyclophosphamide, and rituximab) is a

standard, effective combination treatment regimen, unless

you have certain genetic anomalies. (A FISH test, a

standard part of the work-up, will define this.) There are

other options as well, including trials of promising agents.

If it has not been done, obtain a detailed diagnostic work-

up (FISH, flow cytometry, IGHV mutation assay, and perhaps

CT scan and bone marrow biopsy) by a CLL specialist. Begin

looking up these tests on the internet (see below). You will

be able to develop an increasing understanding of the

disease and its course.

The average community hematologist/oncologist does not see

enough CLL to be able to reliably diagnose and treat CLL,

nor deal with the many different possible complications and

anomalies associated with CLL. Obtain and retain an

experienced CLL specialist on your team -- long term -- for

oversight and second opinions, or as the primary doctor.

This will be crucial for choosing a treatment from the

established regimens, and perhaps choosing from among the

growing number of trials for promising agents, and in

dealing with complications of CLL immunsuppression such as

opportunistic infections or autoimmune conditions. This

option -- specialist or not -- has been studied in an

extended period trial and reported in 2011. The study found

definite advantages in being evaluated and treated by a

hematologist-specialist in CLL-SLL. The study abstract and

excerpts are at the end of the attachment to this email.

With regard to complications, secondary cancers are more

common among CLLers than in the general population, due to

our immunosuppression. Pay attention to unusual or changing

health conditions (symptoms).

You should collect and organize complete records of your

tests, and the doctors' notes, so you can see his opinion of

your status and progression. You are entitled to all this

under HIPPA. This record will also be invaluable for

working with other doctors in the event of complications.

I was fortunate to have four years of Wait and Watch.

During those years I put in a great deal of effort learning

about our disease. Was able to do that as a retiree and

community volunteer, so all my time was and is my resource

to manage.

During this learning journey, I've compiled a listing and

descriptions of prominent, useful sources of information on

CLL. The list is not exhaustive, but will provide you

enough info to come to an understanding of CLL, and it will

lead you to discoveries of further sources. Please be

patient -- there is a lot of information available at the

recommended sites. Just start reading the basic material

from the top of the list, and a coherent picture will form

for you fairly quickly. Your efforts will help you deal

with your changed circumstances.

The list of information resources is attached in Word

format. I hope you can use the information to your benefit.

Sorry to ramble on. If you like, you may contact me by

email, and I will do my best to provide useful advice.

Regards,

Tim Klug