CLL Support

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Anyone Else Have This Problem?

I've been going through something really weird, now in my third year of Watch and Wait.

Sometime during a day I start to feel like I am coming down with a cold. I have sniffles and some aches and pains. I tell my wife that night at dinner that I think I'm unfortunately getting something, then I wake up the next day and I'm totally fine. This isnt a one time thing, it seems to happen almost once a week; maybe, once every two weeks.

Last night I felt constantly accumulating phlegm in my throat when going to bed. Then today I felt like I was getting something. Then i got the sniffles, and felt worse into the afternoon. I had to lie down and passed out for almost two hours. Now its 930pm EST and I'm sitting up and catching up on some work and feel fine.

I'm sort off hoping a number of you will say you have had similar issues during our illness; if not, I just don't get it. Thanks as always for any input.

Carl

26 Replies

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In my first year post diagnosis, I'd often feel like I was coming down with something in the afternoons, with my temperature going up and fatigue really hitting. I suspect you are just experiencing cytokine related effects which are primarily responsible for causing CLL related fatigue, which is commonly described as feeling like you are coming down with the flu. Cytokines are the signalling protein (peptide) messengers, generated by our immune cells to coordinate our response to infections. CLL cells in our nodes produce lots of cytokine noise, which confuses our immune system.

Neil

Thank you Neil. It has unfortunately scared me often since last February, thinking that perhaps the damn Covid thing was beginning. Every single time it goes away within twenty four hours. It is now 850am EST in Florida, and yesterday around 2:30pm I was getting so weak and tired and was coughing and nose beginning to act up too. I had no choice but to stop working and lie down for about two hours. I began to feel somewhat better early Evening, and now this Morning I am back to normal.

I think I am noticing that my condition seems to go up and down like a graph of a stock chart. The easy way for me to tell when it is going to be worse, is when the lymph nodes on both sides of my neck begin to pop out more. They have been really down and not as easy to feel for a couple of months, and now I can feel them popping up a bit again. I am too early in this game to know for sure, but I think my White Count also goes up and down, with the tail end of the year this year and last seeing bursts upward.

Got my first shot yesterday morning of the Moderna Vaccine at a local Supermarket called Publix. Went online at 6am Wednesday Morning and got lucky with an appointment Thursday Morning. I have to wonder how beneficial these Vaccines will be; especially, for us. With our low immune systems I gather that the beneficial effects will be dramatically reduced, but there arent any studies to go by yet. The other factor is the new mutated versions of the Virus appearing in Great Britain, South Africa, and Brazil.

My Brother is a pretty brilliant Physician, and he talks to those like him around the country. He told me recently that the Covid Virus is the same type of Virus as the Common Cold, and then he said that we of course have never had a Vaccine for the Common Cold. He went on to say that is because it mutates so fast that no Vaccine would be relevant for a long enough time to make it worth it. He also said his friends in the field related to infectious disease said the biggest hope are drugs like the ones they developed for AIDS. It doesnt prevent the disease or kill it, but they keep it at bay once it is in the body. I guess we will know soon enough if the current Vaccines produce a Herd Immunity that lasts.

Carl

Yes, the constant process of fighting off infections, real or imagined by our immune system, is exhausting - even without the ever present anxiety about developing a covid infection.

Coronaviruses are responsible for a proportion of common colds, along with SARS version 1 and MERS. Their degree of change varies and we now know that SARS-CoV-2 doesn't mutate all that rapidly, but we don't yet know how often we will need to update our vaccines - or how long any immunity will last.

Neil

Hi Carl, Sorry you're going through this. You might want to take a Covid test to rule that out.

Win

Hi Carl,

I had very similar along with most other B symptoms for a couple of years while undiagnosed.

I always assumed that particular symptom was a dust allergy or similar and never even mentioned it to a doctor.

However, it's reduced and gone completely during treatment. I hadn't actually realised how annoying it was until it's gone.

Regards,

Phil

Carl, Funny you should say that as I've had the same thing a couple of times over the last month.

I think I have a cold (how?!), have full head symptoms, gets worse over the day but no temperature, go to bed feeling pretty grim and wake up feeling great!

Just happy it goes away, no idea what it could be

Jackie

This is exactly how I have been! 😷Jacqueline

Exactly like me Jim

Me too tickly cough and sore throat comes and goes also more headaches last few weeks l put it down to these times and stress 😪

Well the good news is you wake up fine! I don't have this regularly, but do recognise what you are saying. There are times when I wake up expecting a massive cold/bug to have developed, but I am fine. In my (non-medial) mind that are two possible causes:

First, the body is fighting off diseases/bugs all the time - no doubt many 1,000s a day (probably even an hour). Our bodies are not as efficient as others in this fight and so maybe on the odd time, it takes a few hours to fight off a particular incoming bug (instead of say minutes). But fight it off it does!

Second, we are just more aware of our bodies. So we remember/note more feeling a bit run-down and fearing 'here comes something'. Before CLL dx, we just did not notice it: after dx, our disease-radar is just too active!

Amateur doctoring over!

I have frequently come up mentally with the same assumption you have Quarry. I figure our group daily goes to war with bacteria and viruses, as do normal people, but with us our reduced immune systems lose the battle briefly in the very beginning phase of a cold. Then our immune system kicks in, just in time to prevent it from blossoming.

Since I'm still so early in this war, I guess I don't know yet if my immune system will keep dropping its already low levels; or, if they drop to a certain level and then stay there. I guess i'll find out over the next year or two. If it stays like this I guess I'm fine, but if it gets worse and the colds and other infections continue to get more intense then I guess treatment starts.

I recently had an accident by walking into an open drawer in a bed frame. I had jeans on but the force was pretty large (I'm big). I had a small loss of skin on the shin about the size of a quarter. Next day it hurt all the time and a red area had spread from the oval raw area to about two inches in each direction. Went to a walk in type of place where the doctor said it was infected and put me on Keflex. Then the weekend and on Monday it was worse with the red area now three to four inches out. I got in quickly with my Primary, and he said it was Cellulitis. Being that Keflex hadnt killed the bug, he said it likely isnt Staph. It was either go into the hospital for infusion of antibiotics that can kill MRSA or try an oral for a small number of days. We went for the oral Bactrim, and four days later was re seen and got a verdict that the Bactrim had worked well enough to continue it and relax.

The point of all of that for others, is that our reduced immune system can become a serious problem even with minor skin abrasions. I Googled CLL and Cellulitis and learned that we are more susceptible to dangerous infections exactly in the way I just experienced. Thank goodness I guess that my immune systems is still active enough to beat the latest thing with some help from Bactrim.

Be careful.

Carl

I can relate to your post.

... it happens from time to time and seems to 'snowball' .. little things like eye infections, cold sores, most commonly sore throat and for my 15 years of w&w, I am a catarrh 'factory'.

I even share your terminology ... " I think I'm coming down with 'something'

ygtgo

Hey Carl

Similarly, I’ve been in W&W for nearly 3 years and for the first year I felt absolutely fine, no noticeable fatigue or other issues. But the last two years I’ve had increasing fatigue. It seems the further I journey into CLL the more fatigue I get.

I suffer symptoms exactly as you describe....feel like I’m going down with something only to feel better again.

My bloods are very stable ...actually lower now (ALC 13) than the time of my diagnosis (ALC 22.9), but it feels like fatigue and minor symptoms wise I’m very much getting worse.

Other bloods all in range.

Obviously the longer time to treatment the better, but thankfully the lovely people on this site have helped me to not fear treatment, but in fact look forward to a life with more energy!

All the best and stay safe!

Mat

I also share these experiences and I think Neil has described the possible reasons well. CLL is often described as a feeling of having a low grade cold. I also wonder if there is a psychological element to this too. Presently, any cold type symptoms are more worrying so we can become pre-occupied with them.

Best wishes,

Newdawn

This happens to me all the time, and even though I wake up feeling fine, I still feel "stuffy." When I try to sing on my way to work, I have to continuously clear my throat ... but at least I feel like singing.

Hi Wizard166, I am on W&W and have very similar symptoms as many other do on here. Some days are better than others but it’s rare I am far away from feeling like I’m coming down with something. Fortunately it is only a feeling and although frustrating rarely develops into anything more serious.

I feel the same

Seems common amongst us trouble is every symptom is a worry its not covid 😪

Yes same here. I always find that 12 hours' sleep resolves it!

Hear, hear. Some days I am great, sometimes I need a rest.My dust allergy is certainly worse since diagnosis. And being inside a lot doesn't help with the dust issue. Being in FL, I imagine there's also a mold/mildew component tweaking your sinuses/lungs. I noticed it when I lived there. Dehumidifiers in my bathrooms helped a bit, by the time I could see any mildew I was sneezing, coughing, etc. & this was years before the CLL hit.

I have just begun to have really low downs and ups, last week I was sure I must have covid, but no, it's the cytokines.

Yes, just recently I have noticed the same. I get a dribbling nose, feel hot and think I am coming down with something. Next day I am fine with a good night’s sleep. I also put it down to the time of year. Dry heat indoors, cold weather after walks, dust, that type of thing since I live in a colder Canadian climate. I don’t have these issues in the summer.

Me, too, Carl. I feel lousy, then after a couple of hours I am fine. Now, when I feel it coming on, I make a point of relaxing by doing nothing or make myself do something, anything at all to keep moving and denying I am feeling bad. I am in w&w, diagnosed last August, and doctor thinks based on rising wcc since routine annual 2018 blood work, this may have started then. I’m 71 and put this illness where it belongs-to the back of the line of my thoughts. I learn what I can and this forum is great. Take care of yourself in all that you do and especially mentally. So glad you shared your “weird experience “. It reminds me, I am not alone with this illness. Sandra

Yes Carl, I have noticed the same, I have always suffered with sore throats , I get one usually evenings when tired, feel a bit like I have a cold coming, when I awake it’s usually gone.At the moment I am finding ‘day sweats ‘ a nuisance, I have 2 or 3 a day , my neck, upper body mostly can become wet.

Comforting to know we are not alone.

Thank heavens for this forum.

Lady

I too have significant sweats, with most of it happening during the night when I sleep. My wife and I sit up in bed watching TV Series we like for about two hours before lights out, and during that time period I generally sweat heavily too. I've read that night sweats are one of the symptoms that can cause a Specialist to think treatment is coming soon; however, those descriptions I've read on CLL sites usually call them drenching and reference pools of sweat in the bed. Maybe I'm taking the word pools too literally, but I don't have pools of many inches of sweat. The sheets get really wet and are all pinched together beneath where my body lies. I notice my scalp during the sweating times does get what I would call drenched. I mention all of this to now, so others can have a baseline to evaluate themselves by. If enough of us provide this type of input to others through this site, it is easier for each of us to see where we fit within a large group.

Carl

Carl, I have those same symptoms all the time. I feel like I’m getting a cold, with stuffy nose and heavy chest feeling congested and wake up the next day it’s gone. Often I get stomach and back pains and fatigued so bad I can’t function, and then it’s gone again. I get coughing fits so bad sometimes and then they are gone. Every day is a new symptom or a repeat of the other. This is a very strange cancer.