Chronic Lymphocytic Leukemia (CLL) Support Group

Chronic lymphocytic leukemia (or "chronic lymphoid leukemia") CLL, is a cancer in which too many lymphocytes (a type of white blood cells) are produced. CLL is the most-diagnosed form of leukemia in adults. Men are twice as likely to develop CLL as women, however the key risk factor is age: over 75% of new cases are diagnosed in patients over age 50.

0 Online
0 Online

support groups for CLL

I am looking for a face-to-face support group for CLL in the Long Island, NY- NYC area- please let me know if you are aware of any in the area or if you live in the area and would be interested in forming one with me. The only ones I am aware of include "caregivers." While they are helpful, I would love to speak freely about my fears without upsetting or worrying my husband anymore than I already have. Any info is appreciated- thanks

Replies

deleted_user
deleted_user

I totally understand when you say : "I would love to speak freely about my fears without upsetting or worrying my husband anymore than I already have." I live 30 miles from a grocery store, and I am sure there are very few people in my area with CLL. Only others with CLL can understand, and our family supports, but can't really relate.

There are so many types of cancer most people, including relatives, don;t understand that CLL can not be cured with removal of a tumor, or radiation on one part of our body. There are many types of CLL depending on which chromosome is defective.

I understand there is only one type worse than my 11q- broken chromosome, and that is a broken 17b. There are other types of broken chromosomes that will never cause you a problem, and are low risk. Mine is high risk stage 2, and on Watch & wait
deleted_user
deleted_user

The type that is worse is a 17P, and not 17b like I stated.

This is a good article that explains what studies have shown:

http://updates.clltopics.org/4336-doc-how-long-do-i-have

I am an engineer, and must understand the principal on how things work including CLL.