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.
Just had my first follow-up with my oncologist (diagnosed in November 2011, on watch and wait). My numbers look good and overall, I feel pretty well. He suggests waiting until June for my next follow-up (waiting 4 months this time), unless something happens in the meantime, which he does not expect (and I hope!).
I am very comfortable with my oncologist and like him very much. He answers all of our questions. Before my appointment, my husband typed up a list of questions. At the appointment, we gave the dr. a copy and we went throuh each one, as well as other questions that weren't on the list. This works well for us, especially me since I tend to get quite nervous when going to the doctor! I don't feel rushed while there, and I feel that nothing I ask is a "stupid" question. However, I believe that if my condition was to worsen, I would find another doctor who has more experience with CLL patients.
I continue to worry each day about having CLL. Most days I am as OK with it as I think I can be. But I must admit that on some days, I am overwhelmed and emotional about it. I do find that "venting" to my husband (just a bit, not too much!) and writing things down in a private journal does seem to help, as well as trying to focus on the positives.
I just never expected something like this.
I am very comfortable with my oncologist and like him very much. He answers all of our questions. Before my appointment, my husband typed up a list of questions. At the appointment, we gave the dr. a copy and we went throuh each one, as well as other questions that weren't on the list. This works well for us, especially me since I tend to get quite nervous when going to the doctor! I don't feel rushed while there, and I feel that nothing I ask is a "stupid" question. However, I believe that if my condition was to worsen, I would find another doctor who has more experience with CLL patients.
I continue to worry each day about having CLL. Most days I am as OK with it as I think I can be. But I must admit that on some days, I am overwhelmed and emotional about it. I do find that "venting" to my husband (just a bit, not too much!) and writing things down in a private journal does seem to help, as well as trying to focus on the positives.
I just never expected something like this.
Next blood test in May then August and see the Dr at that time to see where I'm at. I started taking 2000mg of green tea, ECGC w/1000mg vitamin C twice a day on my own as supposedly should help lower my numbers. The not knowing what's ahead and when is the worst part of CLL. Trying to live a normal life without thinking about it too much but not easy. Read too much about CLL at first and it just consumes you and your life. Good luck and keep blogging.