CLL - Symptoms at Stage 0

Good morning. Yes, I have occasional bouts of chills. Night before last, could not get warm regardless of flannel jammies, fuzzy socks and 4 blankets (1 was electric). That does happen infrequently to me. I usually have the CLL version of hot flashes. Doc told me it was another symptom and nothing he can do to help physically. I'm not sure what to tell you other than hang in there and lay in a supply of liquids you like to drink hot even if it doesn't seem to help. Microwaves heat water faster than anything, but I also have an electric kettle that is specifically for water. It does a whole pot of water in a few minutes and can be moved next to the chair I'm in without having to unwrap to go to microwave. Hubby gave me a battery operated, usb rechargeable vest that has 3 heat setting to choose from to keep my core warmer. Not sure if any of those would help you, but they do seem to help me. For those horrible sweat session, we bought an ice making machine that I leave on all the time so when the heat hits, the sweat just pours off.

Stupid me failed to check the furnace thermostat last night while freezing. When I woke up this morning and was very cold, I discovered the batteries in the thermostat had died. I wish I could blame the current chills on that.

My chills have now moved from every couple of weeks to several times a day. I checked with my oncologist's office about the chills and they volunteered to move my appointment from April 1st to later this month. I am not a happy camper. I am dreading seeing the results of the blood work.

Hi Norma. Oo brrr. Being chilled like that is so uncomfortable isn’t it? I’ve had that happen and no matter what I did it was difficult to warm up completely. @aleeab gave you some good ideas in their reply to you.
In desperation I used to grab blankets or bath towels and toss them in the dryer. When they were good and hot, I’d curl up on the couch in my snuggy cocoon. I often wished I had one of the blanket warmers like they have in hospitals! My nurses spoiled me. ☺️

It’s good to hear that your oncologist can get you in a couple months earlier than scheduled. I’m curious, when you’re experiencing the chills, have you taken your temperature?

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.

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? 😂

My husband has had CLL for ten years (he is 64) . Two years ago he had to begin treatment because of huge swollen lymph nodes (ugh you could see the ones in his neck from several feet away) and his white blood count was 126. He had some side effects to Imbruvica (stopped) and did some rounds of chemotherapy and immunotherapy and for a year he has been taking Venclexta. He has been in clinical remission since May, and feeling great. The sickest he has been was when he contracted babesiosis from a tick bite this past year, not from the treatments. He has that TP53 thing as well. We went to Sloan Kettering for a second opinion, and were reassured that our doctor here was doing everything correctly and it is a very treatable cancer. I hope you know you are not alone in your cancer struggle and that there is lots of hope and healing.💜

Hi @sue58. Welcome to Connect and thank for sharing your husband’s experience with CLL. It’s positive stories like this that can really help encourage someone just starting out in their CLL journey, and give them hope. ☺️

I’m happy to hear your husband is doing so well and in remission. That’s always cause for a little celebration.
tick bite was unexpected though. Wow, that episode sounded scary! Those things creep me out. We have so many wood and deer ticks where we live. What type of treatment did your husband need? Antibiotics?

Hi @sue58 Thank you for sharing your husband's story. I was hoping to get in ten years of wait and watch but it looks like that won't happen. I am very happy to hear that eventually the correct meds for him worked, but yes how unfortunate to have to deal with the tick bite. My wbc is at 119 and lymphocyte count almost matches that. There is definitely lots of hope for people with cll. I asked about entering a trial, but unfortunately there were not enough people in my area in the same category as me, although the doctor said she may be able to take a second look at it. I am torn anyway about limping along the way I am or starting treatment because of the numerous possible side effects. What kind of side effects did your husband have on Imbruvica? I will have to look into Venclexta.

They use an anti malarial/parasitic drug - Atovaquone , because it’s a parasite not a bacteria. It eats your red blood cells, not what a leukemia patient needs.🥴 He had to have three transfusions. I think we live in the tick capital of the world.