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2 years ago I found out I have CLL. Two years prior to that I kept going to the Doctors because I was feeling very tired, night sweats and just wore out. My Doctor kept telling me it was stress. They did blood tests and I would get a call back to the office to say my white blood count was a bit high (12-15) but it was nothing to worry about probably just stress. I kept telling him it was not stress, I know the difference and this is different. This went on for two years, so on my last blood test and again I got called back into the office and again the Doc told me the same thing but this time I got mad and hollered at him and said " NO, it is not stress, something is wrong" so finally he looked back at all my last tests from the last two years then he looked up at me with a very worried look. He said " now don't get scared, I am going to send you to a blood specialist". I went had bone marrow test and yes I have cll. It was confirmed two years ago but I have had it four years now. I was so angry at my Doc. He made me think I was crazy for two years. I went to the mayo clinic and in the report it said have was confirmed with CLL two years ago and two years prior to that I had leukocytosis. My white count in now 23 and my lymph count is about 85. I am in the watch and wait period. I keep forgetting to ask my Doc at what point do I have to have Chemo and bone marrow transplant. I am only 47, I was 43 at the onset of CLL.
[QUOTE=jhfreybaby;3821361]2 years ago I found out I have CLL. Two years prior to that I kept going to the Doctors because I was feeling very tired, night sweats and just wore out. My Doctor kept telling me it was stress. They did blood tests and I would get a call back to the office to say my white blood count was a bit high (12-15) but it was nothing to worry about probably just stress. I kept telling him it was not stress, I know the difference and this is different. This went on for two years, so on my last blood test and again I got called back into the office and again the Doc told me the same thing but this time I got mad and hollered at him and said " NO, it is not stress, something is wrong" so finally he looked back at all my last tests from the last two years then he looked up at me with a very worried look. He said " now don't get scared, I am going to send you to a blood specialist". I went had bone marrow test and yes I have cll. It was confirmed two years ago but I have had it four years now. I was so angry at my Doc. He made me think I was crazy for two years. I went to the mayo clinic and in the report it said have was confirmed with CLL two years ago and two years prior to that I had leukocytosis. My white count in now 23 and my lymph count is about 85. I am in the watch and wait period. I keep forgetting to ask my Doc at what point do I have to have Chemo and bone marrow transplant. I am only 47, I was 43 at the onset of CLL.[/QUOTE]
Oops, Sorry
Hi my husband has CLL and was diagnosed when his white cell count was 97 he was on watch and wait until his went to about 247 when he was put on Fluarabine. He to had had it sometime before it was confirmed and that was six years ago. His doctor told him that the lymph glands that were swollen in his neck was caused by a throat infection!! After the cymo which reduced his cell count but did not put him in remission he went on a trail for Campath which worked very well and put him in remission for nearly 8 months, we are now looking at a white cell count of 109 and he has been asked to go on another trail of Ofatumumab which I am looking into at present before he excepts. Ultimatley he needs a stem cell transplant so he is looking at the best way to help himself until a donor comes along. My advise is to take someone with you to your clinic appointments so they can fill in the gaps that you miss, ask questions and look into all the recommended treatments that you are offered.
Hope this is of help
Sue





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