What is CLL?

As it turns out, after carefully reading the linking/quoting policies of several major health websites, they all seem to be touchy about people directly quoting their material, and in some cases even linking to their pages. This is strange and frustrating, because there are some very good summaries available out there that I had hoped to plug in here to give the reader a brief (but technically accurate!) description.

Instead I’ll do some paraphrasing to come up with my own brief interpretation, and then I’ll provide suggested resources for those who wish to dig in  a little deeper…

Chronic Lymphocytic Leukemeia (CLL)

CLL is a disease in the cancer family. The underlying problem with CLL, just as with any other cancer, is that some cells in the body multiply more quickly than they are supposed to, and begin to cause problems around other parts of the body. Many cancer types result in tumors, where the rogue cancer cells penetrate into organs or other areas and congregate.

CLL is a bit different, because it’s a blood/bone marrow cancer. As a result it doesn’t really form tumors – rather, it clogs your blood stream and bone marrow with an excess of white blood cells, and causes problems that way.

Who Gets CLL?

CLL is the most common blood cancer, with approximately 15,000 new cases diagnosed each year. Most new patients are diagnosed at age 50 or above, though it can occur in people much younger. For example, I was 42 when I was diagnosed, and had probably had it since I was 41. It occurs more frequently in men than women (sorry, guys!).

What happens when you get CLL?

There are 4 major families of leukemia, but I’ll stick with CLL here, and you can refer to the other types at the references provided below.

The “C” in CLL stands for chronic, which in the context of this disease means “slow growing.” What that really means, according to my understanding, is that the bone marrow produces an excess of white blood cells. In CLL, these cancerous white blood cells do not have the proper termination instructions built in – that’s the mutation that makes them cancerous. So the bone marrow keeps churning out new white blood cells to replace all the ones that are supposed to be dying on schedule, only none of them are dying on schedule! So people with CLL have an excess of octogenarian white blood cells, basically.

This excess of cells can cause myriad problems over time, including problems in the spleen, liver, and of course  lymph nodes, as well as other areas of the body.

Life Expectancy

CLL has been loosely grouped into two different classes. The classes don’t have specific names, but their life expectancy and treatment plans are very different.

One type is very slow-growing. Patients with  this form of CLL may never require treatment and live for decades with the disease with little or no impact to their lifestyle, or they may be treated very infrequently. People with this version of CLL have an average life expectancy of 15 years. That may not sound like that much, but  keep in mind that a SEER report conducted by the National Cancer Institute revealed that approximately 80% of patients diagnosed with CLL are age 55 or older, meaning that for many patients 15 years would lead to an average life expectancy.

The other major class of CLL grows much more quickly and must be treated using one or more of a variety of chemotherapies. The average life expectancy with this faster growth version is approximately 8 years. Naturally that’s the version I have.  🙂

References

I have done my best to research each website’s posting/linking policies and follow them for every link I post on this site. My intent in posting any links is simply to educate and inform, not to:

• Imply that any of the referred to websites in anyway endorse my site, or
• Infringe on anyone’s copyright or intellectual property.

If I have linked to your website and you would like me to remove it, please contact me I will remove the link immediately.

General Information Links

American Cancer Society CLL Overview page

The Leukemia & Lymphoma Society CLL page

The National Cancer Institute Leukemia page

SEER report conducted by the National Cancer Institute discussing the distribution of newly diagnosed patients each year

How to Become a Bone Marrow Donor

For many patients, the only cure is a bone marrow transplant. A blood sibling is your best chance for a match, but there’s still only a 25% chance per sibling that you will match, so it’s very important for unrelated people to register as bone marrow donors. My case is a prime example – my sister is not a match for me, and I’ve been fortunate enough to find an unrelated donor who is willing to save my life by donating his marrow (thanks, Anonymous Donor, whoever/wherever you are!!!)

Registration is easy and painless, and here are some links to different bone marrow donor registries that will be happy to help you sign up, or even help organize donor drives in your community!

Be The Match (National Marrow Donor Registry)

Getswabbed.org