Chronic Lymphocytic Leukemia (CLL) Support Group

Hi all, my father passed away recently from complications surrounding CLL. I don't believe he ever posted here, but I just wanted to share a little bit about his story, and hopefully this will be helpful to you all.

My father was diagnosed with CLL more than 15 years ago. He is a veteran and likely contracted CLL from his contact with chemicals during the war. Us children were told about this at the time, but we did not know much other than the fact that he was sick with a type of cancer that was currently not active and that didn't require treatment, but that this could change at any time. It was not something he ever talked about.

Ever since then, my father had been doing "watchful waiting." He was fortunate to be monitored by one of the top hematologists in the country. At no point did he ever receive any treatment, and as far as we knew, he was as healthy as a man with a chronic illness can be.

Recently he came down with the flu, and had a hard time shaking it. I see from some of the posts here that this is not an uncommon problem for sufferers of CLL. As it got worse, he became dehydrated and had to be hospitalized. He died from heart failure the next day, much to the shock of the attending physicians. It turns out that he had developed multiple severe infections, and that the leukemia had developed very quickly in his body. This prevented him from being able to fight the illness and caused his sudden death.

I don't write this to try to scare anyone, but for those of you out there who have or love someone who has this disease, I'd advise you to keep these two things in mind.

1) Treat illness and infections very seriously, and be quick to seek treatment. From what we know now, it seems doubtful that my father could have lived much longer, but in any case it's wise to seek early treatment.

2) Keep your affairs in order, and make sure that loved ones are aware of everything they need to know in the event of your sudden death. Luckily we were able to eventually get a handle on most things that we needed, but things might have been much more difficult had my father's passwords not been so easy to guess.

Unfortunately, this disease is unpredictable and still fairly poorly understood. We all expected that someday we would get the word that my father would need to start treatments. And he was lucky to have so many years of healthy life after his diagnosis. But none of us expected the sudden way that this happened. I hope this doesn't happen to anyone else, but it is a possibility, and something you all should be aware of and prepared for.

I wish you all the best of luck in your fight against this cruel disease.
Posted on 06/11/09, 10:06 pm