In 2005, I was very active running a dance club with my husband and friends, and also very worried about my Mum's health, when I discovered a pea-sized lump on my shoulder. I had been feeling tired but thought nothing of it. I would even slide down the stairs on my bottom rather than walk. After a week when it did not disappear I went to the doctors who after examination, told me it looked like cancer. So after a bone marrow biopsy, I was told I had CLL and would have to watch and wait. ( I was 47 years old). My lymph glands swelled considerably and in 2006, I had chlorambucil which was effective.
In 2009, my lymph glands swelled again and I was told I would need to have FCR treatment (Fludaribine, cyclophosamide and Rituximab). On being sent home, the hospital omitted the anti sickness drudges, and because I was feeling quite woozy I did not notice and quite happily swallowed the medication with the result I was sick as a dog, with the result that I cannot tolerate strong drugs. I ended up having to have the medicine intravenously given.
Then in 2011, I was given Fludaribine which is a maintenance drug which finished Dec 2011. Fortunately, I have been lump free since. However, in April 2012, I noticed a small lump near my throat, had a thyroidectomy and am now on thyroid tablets (I have thyroid cancer as well!).
My haematologist is a lovely lady who keeps a very close eye on me and she understands me very well. I have had no side effects from any of the drugs I've taken and I believe the FCR side effects were due to me not being given the anti sickness drugs. Yes, I do get tired and will often fall asleep in front of the TV. However, I still lead a very active and normal life and my church has been a wonderful support to me. My husband is very understanding and supportive. My general health is very good and I haven't even had a sore throat or cold for a couple of years.
I do not know what the future holds but will cross that bridge when I come to it. I do wonder however, if I have had CLL for much longer than when it was diagnosed. I can remember in 2002 on my wedding day when a ginormous bruise appeared on my arm and I had to put make up on it to camouflage it. I noticed also that cuts would become easily infected. Has anyone else thought the same?