Patient to Patient

We are excited to introduce a new page on our web site. This page has been written by some our patients who have insightful and helpful information that other patients may well find useful.

Our current contribution is about Chronic Lymphocytic Leukemia (also called CLL) and was written jointly by two of our patients, Sue and Mark (last names kept anonymous). It has basic information about CLL as well as useful web site links for further information and support groups.

Any other budding authors can contact Dr. Caroline Block, our web site editor. Both can be reached at our Wellesley office at (781) 237-0700.

Chronic Lymphocytic Leukemia (CLL)

Several years ago, like you, we were diagnosed with CLL. Just hearing the word leukemia was scary and even though we were reassured by our physicians, we found it to be a tough disease to understand. Unlike other cancers where surgery or treatment is immediate; we learned that CLL is best untreated, but needs to be watched carefully. We were unprepared for the emotional impact of this "watch and wait." We felt compelled to find out as much about this disease as possible. It wasn't so easy. Materials were often dated, and we had trouble sifting between the helpful and fictional information. Because of this we thought that we would share with you and your family some of the information that we found helpful. We hope this pamphlet will help you understand your disease.

First of all, how do you read those blood reports? What do all those numbers mean? Here is the normal range of the composition of blood:

RBC: Red blood cells	Carry oxygen to cells in your body	4.6-6.2 million per microliter of blood for males 4.2-5.4 million/mm3 for females
Platelets	Clotting agent	150,000-350,000 or 150-350 x 1000/L
Hemoglobin	Iron content in red blood cells	14-18 grams/ 100 ml of blood for males 12-15 grams/100 ml of blood for females
Hematocrit	% of red blood cells in the blood	40% - 54% in males 35%-47% in females
WBC (white blood cells)	Main component of the immune system	4,000-11,000 /microliter of blood or 4-11 x 109/L
Types of WBC	neutrophils monocytes *lymphocytes eosinophils basophils	50-60% of total WBC 3-10% of total WBC 25-35% of total WBC 0-3% of total WBC 0-2% of total WBC

* Folks with CLL, have an elevated white blood count. When the composition of the WBC are examined, the numbers of lymphocytes are higher than normal.

Once you learn to read the blood reports, what does it all mean? For folks with CLL the only thing consistent about the disease is its inconsistency. For some people, a WBC of 20,000 can mean that treatment is necessary, while others live a normal life with WBC count over 100,000. In the world of CLL, the normal course of action is to treat the symptoms, not the numbers. So what symptoms should you look for:

Significant weight loss
Doubling of WNC count
Enlarged lymph nodes
Fatigue
Night Sweats
Frequent infections

What is the treatment? The exciting news is that there are many new medicines in clinical trials which means that there are and will be many more options for people with CLL. The treatment, however, treats the symptoms and therefore, is not advised until symptoms disrupt your life style.

For those of you who have computer access, we have compiled several websites that you may find helpful as you learn about your disease.

http://www.healthtalk.com/cllen/index.html Chronic Lymphocytic Leukemia Education Network (CLLEN) is a unique source of comprehensive CLL information and support. Andrew Schorr, the director of this wonderful resource, has CLL and is currently being treated by Dr. Keating at MD Anderson in Houston, TX.

http://www.acor.org/leukemia/cll/cllfaq/cover.html This site addresses the most frequently asked questions in an informative and up to date manner

http://www.acor.org/leukemia/ This site includes many links to other sites on the web. If you want more information, this site offers it all.

http://www.mdanderson.org/leukemia/living_with_leukemia.html MD Anderson, Houston Texas, provides excellent information for folks living with leukemia. You don't have to be a patient to benefit from this website.

http://www.cllfoundation.org/ This is "our organization," run by volunteers. Unfortunately the Society of Leukemia and Lymphoma does not spend much money on CLL. The CLL Foundation was set up to funnel funds specifically for research on CLL. It is a grass roots effort and is funding some interesting research into the development of an antisense compound against the Bcl-2 protein that is expressed in diseased cells. The Bcl-2 protein is believed to inhibit programmed cell death . The Foundation is considering assisting in a field test of a form of antisense made by Genta, Inc.

©Caroline Block @ NEHO, 2006