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support groups for CLL
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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
Posted on 02/28/12, 03:44 pm
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Reminder: This is a support group for Chronic Lymphocytic Leukemia (CLL). We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

You may also create your own Member Groups where you can moderate the discussion.
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Reply #1 - 04/01/12  10:36pm
" 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 "
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Reply #2 - 04/01/12  10:52pm
" 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:

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

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