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← Return to CLL - Symptoms at Stage 0
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It has been a long time since I have added anything to this site mainly because I have been waiting for results. Never has my doctor told me my stage of cll. To recap I am 66 years old and was diagnosed with cll in December 2021 so have now had cll for just over two years. People said don't worry, numbers will probably level out and you will be on the watch and wait program for a long time. Well my WBC and lymphocytes never leveled instead continued to climb. I told my doctor I did not think this was a normal cll and finally she did more testing. The results were:
Chromosome 17p deleted
TP53 variant identified
IGHV hypermutation status: unmutated
This leaves me in the Higher Risk CLL with a poor prognosis.
Having said that my Doctor has said she will give me BTK inhibitor tablets. I have read up on targeted therapies and although she has not made a final decision she is leaning towards Acalabrutinib. She also said to get all medical and dental appointments out of the way in the next two months and that she will continue to watch numbers and decide when to start the drug.
Right now I get pretty tired and probably do half as much as I used to do. I have some swollen lymph glands. Sleeping at night is getting more difficult as the night sweats wake me up and sometimes I have a tingly feeling when I wake up in the middle of the night. My joints are quite painful. Despite this pain I try to stay active with pickleball, walking and dancing.
I do hope that @loribmt gets a chance to read this and comment as well as others who feel they might have similar things happening to them. I am trying to keep out the emotion and stick to the facts and stay positive. I have always tried to not worry about thngs until they happen but the unknown has been creeping into my thoughts despite me trying to suppress them with knowledge.
Thanks everyone for listening.
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Hi @marytheresacll! I know you’re always so positive and trying not to worry about your health. This new change in your CLL status has you a little concerned, I’m sure. But outside of needing to start a treatment plan, this may not impact your life any more than it does now. You may have had this for many years before even being diagnosed.
The survival rate for CLL is better than for many other types of cancer and that isn’t including statistics with treatment. This is still a blood cancer that develops slowly and is generally managed with medications or targeted therapies. So even though there are changes taking place, your doctor has time to make the decisions about your treatment.
The doctor mentioned starting your treatment with one of the more common meds for CLL, Acalabrutinib (Calquence), which has been shown to be beneficial in treating CLL, even patients with variants. Seeing that you’ve not been receiving any treatment to this point, you may actually start experiencing fewer symptoms once you start taking the meds! I saw this happen with a neighbor a few years ago. He’d had CLL for about 10 years but I could tell he was getting less robust in his health. He started taking Calquence, and wow, he’s like a new man. He and his wife have 5 kids, he runs, bikes, works full time. You’d never know he has CLL.
I’d hate to have you give up pickle ball, walking and dancing! I go stir crazy when I can’t get out to walk daily. I think those daily activities that keep the blood flowing are so important to our health and well-being.
I want to learn to play pickleball but most of the people down here where we spend our winters are not appreciative of newbies… haha I don’t want to be pummeled like the geeky kid in dodgeball! Remember the old outdoor recess days at school? 😂