UK CLL Forum, UKCLLFORUM

Patient Profile for: Bubbles55



General
Mutational Status
Positive Prognostic Markers
Neutral Prognostic
Markers
Negative Prognostic
Markers
Chromosomes
Clinical Presentation
Drug Allergies

DOB: 1943
Female

 

     

 


 

General

Current CLL Status Watch and Wait/

I feel somewhat a fraud when I read through the forums, as I seem to date to be one of the lucky people who can possibly be on watch and wait for some time and am already 70years old.

I was diagnosed just over 2 years ago when after giving blood, lymph nodes came up in the back of the neck, and I experienced night sweat and headache and extreme tiredness. A full blood count was taken and I was referred and diagnosed as having CLL.  My doctor said that a previous higher than normal WBC was put down to a possible infection. Initially I was on 3 month check, then 6 monthly now annual.  The next is due in the summer.

My ongoing symptoms are tiredness, headachy from time to time, and dodgy thermostat and I sometimes wonder whether my poor skin and vivid dreams could be a weird symptom ofthe CLL. However, it’s most probably down to being older. Had a bad night sweat recently but put this down to viral infection, normally I wake up and manage to cool down.

I ignore the CLL while taking sensible precautions. I go to the gym 6 mornings a week split into one day cardio, one day floor, and one day weights. The nature of a gym and its equipment, mean I wash my hands thoroughly and use a tissue to open the doors when leaving.  I use bacterial gels frequently when out and about, always being aware of surfaces other people touch especially as people seem to cough into their hands before leaving their germs on shopping trolleys, bus rails etc. I use Vick’s first defence at any sign of a cold or when I have been in an environment where people are coughing into the air. The only viral infection I caught in the last 2 years was from a dear elderly neighbour who was found on her bathroom floor, and who was unaware she was coughing into my face. She later died from the infection. I amazed myself by only being ill for about a week.

I do my best to stay fit by taking vitamins every day. 1 tea tree, 1 multivitamin, 1 ubiquinol, 1vit D, and 1 acai berry.
I also take Echinacea every few months for 2 weeks. I will be going back onto iron and multivitamin, as I felt a marked reduction in energy when I stopped my Q10 and changed to a 50+ multivitamin. They tell me nothing I take will slow the disease, they should know. Nevertheless I feel I am helping myself to be as healthy as I can be in readiness for the day I too will require treatment. I have all my print outs to monitor my progression although I do not yet understand all the terms or implications.

You know I feel guilty when so many are so ill, and feel concern for the members who do not or cannot continue to contribute to the forum. I am so grateful that so many are prepared to share their CLL journey. The information you all share prepares me for the future. Thank you.