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.

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Leukemias
/ Chronic Lymphocytic Leukemia (CLL) Support Group

waiting to find out...........

catlady72
catlady72
Glad to have found this group. First visit to oncologist this past Monday (Aug 6) Did more blood work, waiting on Flow test, said he was 80% sure I have CLL.....this mainly from my WBC (28,0000) and lymphocyte count 78% plus swollen lymph nodes in neck. The waiting and worrying is a killer, along with wondering what is next. I am 58 yrs old and this is the last thing I expected to happen................thanks for listening.
Linda
catlady72
catlady72
Well the good news from the ultra sound (did instead of MRI) was that it is just fibroid's in the uterus, and they are not causing issues, so will leave them alone. Liver appears to be a fatty thing, so nothing there. Their issues is with the numerous nodules on my thyroid. Guess the ones on the left side are quite large and the concern is they could cause "issues" with my wind pipe in time..........oncologist is on vacation till middle of this coming week. I REALLY do not want to have my thyroid removed, so not sure what other options I have. I have issues with iodine, so that is another concern. GEEZ! Do problems ever stop appearing! Was discouraged, but trying to take one day at a time! That is so hard to do. Made an appointment for Oct to go to IU medical to see a specialist on CLL for a 2nd opinion, just to make sure we are on the right track.
Have a FISH, ZAP 70 & ICLL test done later this month, they say they can "predict" progression rate with FISH test??? Not so sure I want to know.................
Thanks for all of your support, I feel as if I have found a new "family" in all of you!
Hugs to all of you!!
Linda
catlady72
catlady72
Thought I would give everyone an update. I saw a specialist at IU Med. in Indianapolis. He agreed with my regular oncologist. I have the "garden variety" of leukemia and they expect it to be slow growing. Fish showed none of the bad markers! The thyroid will be ultra-sounded again in 6 months to see if any changes. I cannot take the iodine uptake test for allergies to the iodine.
So right now, the only thing is I have some suspicious spots on my face and now need to see a dermatologist.
Oncologist does not want to do any more blood work for 6 months, which surprised me, as he originally said we would check it every 3 months. Just curious how often others get blood work done if you are in the "watch & wait".
Hugs to all of you!
Linda
igmaam
igmaam
I get checked every six months and that's how it will stay as long as things don't start going downhill at a fast rate. You know, it seems like they could get around the iodine thing. I'm allergic to iodine, but when it is necessary for testing, they counter the reaction with antihistamines and a few doses of prednisone and I am fine. Anyway, don't fear to lose your thyroid, Lots of people walking around without a thyroid.