Most of us are aware that fatigue and tiredness are commonly associated with CLL and indeed may have been the very reason for going to the doctors initially. Are there any other illnesses that fall into this category and are the details of these illnesses recorded anywhere? I ask because two of the other ailments I have suffered with, sinusitis and warts have also been quite prevalent with other CLL patients. Is it just chance that these illnesses have occurred more than would normally have been expected in CLL patients or is there some connection? Could it just be that although not directly connected, CLL (or its treatment) may influence other conditions because of a weakened immune system for example? Since being diagnosed with CLL in November 2008 I have had the following illnesses: Vasculitis (2008), Sinusitis (2011), Nasal polyps (2011), Diverticulitis (Diverticular bowel perforation -2013), Warts (2014), and two bouts of chest infections and mild pneumonia over same period. (Fine figure of health is me!!)
I suppose what I am asking is is there a database (or something less grand) with all the illnesses common to CLL and its treatment that could be easily accessed and if not would it be useful to have one? I realise that we all respond to CLL differently and that probably the majority of patients may never suffer from any other conditions as a result of having CLL, but might it be useful to record our other ailments to build an historical picture? Any comments would be welcome.
Kind regards
Kevin - Essex, UK
Written by
Foggymind
To view profiles and participate in discussions please or .
An interesting idea Kevin, but there hasn't been much research on CLL related illnesses perhaps because it could be just about anything.
One area that has been studied is secondary cancers. Certainly CLL patients are at higher risk for most cancers and perhaps 8-15 times more susceptable to various skin cancers...
It has been well reviewed that CLL patients become depleted in antibodies, particulaly immunoglobulins, IgG, IgA, IgM. The first can be 'topped up' by IVIG, a combined blood product from thousands of donors, but IgA, which protects the mucous membranes, remains at sub optimal levels, hence the frequent respiratory infections...
I agree it would be nice to have a list, but probably undoable... The best defense is a good offence... exercise, heathy diet and lifestyle, reduce stress, seek medical advice promptly, so things don't get out of hand, stay out of hospitals and schools, ... common sense, use sunscreen, bug repellant.... oh ya... wash your hands often...soap and hot water...
Good question Kevin. Because normally B-lymphocytes form antibodies against a huge range of infection types and then mature into memory cells that remember that previous infection and plasma cells that are the bodies factory for churning out antibodies, it can be pretty well anything as Chris says. One thing to watch out for though is reactivation of viral infections that your body can't eliminate - like warts and shingles for example. This can be a particular problem during treatment, when our immune system is further impacted, which is why prophylactics including antivirals are often given.
Here's an article from the Leukemia and Lymphoma Society on this topic
Thanks for the replies and the useful links Chris & Neil, I guess we have to accept that although these illnesses may be common to CLL, they may not be because of CLL. Would there be any mileage in collecting “Other illness” data anyway for patients with CLL to gradually build a dataset and identify trends etc.? As long as everyone knows and accepts that there may not be any medical research behind the figures, just the raw statistics? For example, if after collecting data on other illnesses for three years the figures showed that on average for every 100 CLL patients, 88 of them also had warts (me and my warts eh!), then isn’t there is a good chance of warts on the horizon for many patients?
I'm firmly in the shingles (Zoster virus) camp for viral reactivations, others perhaps Cytomegalovirus, CMV, and still others, Human papillomavirus, HPV... a few Hepititus B...
Which virus reactivate may be based on exposure or other unknown factors... certainly science doesn't appear to have a very good handle on this...
What factors give me shingles and Kevin warts... ???
I have suffered with warts in recent years and never really associated them with CLL but now you mention it they seem to coincide with the onset and diagnosis. They can be very irritating and painful especially in the groin area and of course we put up with it rather than go to the docs and show him my crown jewels.
Best I get my backside to the surgery and get something done.
I sympathise with your "warts" problem - as I have suffered for over four years since my CLL reoccurred - although more luckily restricted to my hands.
My Consultants - (Oncologist & Skin.) both diagnose these as my immune system has been compromised.
Various tablets, creams & "paint" have been prescribed and whilst I believe they kept the warts "at bay" they never removed them.
IVIG was used over the winter months last year to help boost my immune system - but the warts remained.
Now over twelve months since treatment and a few visits to the Dermatology dept - I have finally got NHS funding for more specialised treatment - which seems to be working!!
However, you may wish to close your eyes now ------ bearing in mind our wart location ----- as my new treatment is by laser..!!! (I guess you have the scene from "James Bond, Goldfinger" in your mind right now!!) But its not that bad -- honestly!!
Made me smile Marty, the lazer certainly needs a steady hand, reminds me a little of the current advert featuring lazer eye surgery can't remember what it is advertising though
Hello Kevin ,i know a lot of people with all of your complaints and none of them have CLL ,everyone i know keeps on about getting infections ,then getting better ,only for it to return , eat the right foods ,nice brisk walk ,will help ,wish you well.
Perhaps "dry eyes". After treatment CLL no problems: "normal eyes".
Ear infections, sinusitis, warts, itchy skin, ARTHRITUS!!!!!!!!!!! big time, UTI's, petechaie, brain fog, huge fatigue, cough, shingles. And swollen lymph nodes pretty much everywhere...add those to the data base. PS didn't have any of these before CLL
My biggest complaint is nausea, everyday to one degree or another. I have 3 bottles of Zofran, one in my home, one in my saddle bag, one in my purse. I've taken up to 9 pills in 1 day and still didn't stop.The nausea ended up being the reason for blood work and CLL dx in 2012. UCSD did full gastro workup this year to find the cause, conclusion CLL related. Fatigue, petechiae, itchy crawly head, constant deep cough, generally feel crappy every day, brain fog , which I just recently learned from Aussie Neil's post. A few skin tags which I just rip them off, does freak out my husband especially when he let or rather I got to his tag first and ripped, jeeze the dude had a total come-apart. Now he goes to the Dr. for something. My Daddy had Leukemia when I was a kid, this was @ 1966. Don't know any thing about the type, but he did have skin tags and was always on the alert for more.
I may be wrong but I think that some of the temporary disorders mentioned here are not necessarily associated with CLL but rather a side effect of the treatment.
Shingles for example is known to be linked to FCR.
Generally I like to stay positive and focus on the health aspect rather than on sickness. You are what you think...
I'm curious how many of these are before treatment because I definitely have been getting "brain fog" more and more frequently and warts over the last few years but I haven't had treatment (My CLL is progressing at a pretty rapid speed the last year). The last 6-7 years I have had 3-5 bouts of sinusitis a year but my Drs. always attributed it with working with young kids, interesting this year so far only 2 times and I am working with slightly older students but overall the fatigue is so much worse (as in I fall asleep at the computer!). I always wonder what is "CLL related" and what isn't but my Oncologist doesn't seem to think anything but the enlarged lymph nodes are...He thinks the extreme fatigue isn't really related because I have sleep apnea but I use my CPAP regularly and see my Sleep Dr. regularly and just had a sleep study this past summer where it was discovered that everything was fine on that end!
Several times Prof Terry Hamblin's comment on fatigue in CLL patients has been referenced in replies on this site and that was quite a few years ago now. Sadly the clinical understanding is no further advanced.
You don't have to have had treatment to be impacted by brain fog either, though there is definitely a post chemotherapy treatment fatigue syndrome colloquially known as "chemobrain". That was disputed by medicos 'because chemotherapy drugs can't cross the blood brain barrier and so can't affect the brain's functioning'. Now there is growing acceptance that 'chemobrain' is real and mechanisms that could explain it are being unearthed. Pretty well all the research is in breast cancer patients though.
I and many others can attest to brain fatigue being a problem for untreated CLL patients. I find it very frustrating to take much longer to think through tasks that used to be a 'no-brainer' and even having to give up and try when I'm more alert. In my case, keeping free of infections and exercising more (not easy when you just want to rest), has definitely helped. The impact of infections makes sense to me and if your CLL is advanced enough, then your body is likely to be struggling, perhaps while you are unaware of that, to overcome infections (including the virus reactivations I mentioned above) and that has to affect your concentration. Do you have problems concentrating/thinking clearly when you are coming down with or infected with a cold? I certainly do. If you have a significant CLL tumour load, then all those CLL cells are signalling with cytokines too as Prof Hamblin mentions.
If you are getting sufficient sleep from your use of CPAP - and given the support from your sleep study results, then there presumably must be another cause for your brain fatigue and it could well be CLL - or perhaps something else. If your oncologist and regular doctor can't find another cause, perhaps you can educate them into the realities experienced by many with CLL - even prior to treatment. Physical and mental fatigue is a real issue for us.
My regular dr. feels it's the CLL as do most of the other drs. The oncologist keeps referring me to. Most don't get how I am still working (it's called, I am not being treated and in my job/situation, I have to work as long as I can to save as much as I can so that when I am being treated I can survive!). I just come home from school right when the students are dismissed and take a 2-3 hour nap then correct then go to bed early...
Oh well, speaking of work- time to get some done- you always have great responses too bad you can't conv the oncologist!
I'm sure that individuals differ greatly. We each bring in a unique set of pre-existing conditions and genetics we are born with. We each have a different environment - family members, pets, work, etc. We also each have a particular version of CLL that determines subsequent changes to B-cells and ability to fight other cancers. The landscape changes with treatment, too. I learned in an online imminology class that B-Cells do a massive amount of signalling to many other bodily systems, and things are still being learned.
I have experienced:
Shingles - upper trigeminial left side, with chronic keratitis in the affected eye, plus ear infections on that side that affect balance
Conjunctivitis - both eyes. All I can say is, if you cry, make sure your hands are clean. I am crying less due to depression since I got more refined meds, but some movies still bring it out.
Bell's palsy to varying degrees, left side
Infected hangnail that required minor surgery
Diverticulitis - thankfully, not a perforation like yours
Gastritis - hard to say if this is related or just a bug that was going around.
Disturbed biome and digestion due to rounds of antibiotics and antifungals to fight the above, but I had no choice, I felt.
Chronic sinusitis - I had some of this before dx.
Sore and bleeding gums from time to time.
Fatigue - though I have an appointment with a cardiologist tomorrow to investigate enlarged and hypokinetic right side. I had seen this somewhat pre dx, but discovered on my diagnostic odyssey into cause of fatigue. I do have mild asthma, but swelling in legs and feet got really bad, and coincides with fatigue.
Depression and anxiety got worse - I've had this my whole life.
Arthritis - I had some of this before dx.
I do have below normal IgG, even at stage 0.
To me, CLL means learning to fight many minor problems. Things you had before dx may get worse.
I found the link you gave to Dr Claire Dearden’s publication very interesting thanks, and it answered some of the questions I had set out to learn. You yourself appear to have had a rough ride with ailments aside from and as well as CLL, I hope things get better for you soon. It is clear from this post and others that fatigue is probably the most common ailment patients with CLL experience, but it still remains that fatigue and any of those “other” illnesses we have could still be attributed to other causes not related to CLL. I myself have moments of very bad fatigue but I should remember I have heart failure as well and this will tire me, especially if my physical activity is higher than usual. It is probably safe to say there are a lot of illnesses common to both CLL patients and non CLL patients but that some of them appear more prominent with CLL patients than others, even though there is no medical evidence to support this.
Many thanks again to everyone for their comments, links, and opinions, they were very much appreciated.
I diagnose computers and networks for a living. A look inside almost anyone's computer logs will reveal many things that look broken. Some of them are indeed broken, some are not seriously broken, some are just information overload from a zealous programmer. Some things that are broken are not in the logs at all. The same symptom may have multiple causes - some of which may not even be in the computer, but in other computers and the network. Sometimes, attempts at fixing things will do damage or simply change the symptoms.
Humans are much more complex than computers, but I think the same principles apply. Medical progress continues. I wish I could say the same about computer problems!
Good point about the logs Seymour. These are the logs that phone scammers, purportely from Microsoft, use to convince people with perfectly fine computers that they need expensive malware protection to 'fix'. And while scamming you, they've asked you to give them full remote access to your computer with admin rights to put anything they want on there, look at and copy your files, send emails purportedly from you and so on. Likewise some less than ethical 'operators' in the medical services field, more so in the alternative medicine field where there aren't the professional controls, will find things 'wrong' with you by special testing and offer remedies from them you generally can't get from your local pharmacy.
Bicarb cures everything, Chris! Surely you have learned that by now! LOL! I was scanning an article about something yesterday from a reputable source that mentioned bicarb as a temporary source of relief for stomach issues - we used it for that and bee stings growing up - which warned about extended use. I don't remember what it throws off in the system, but I'll stick with occasional use and brushing my teeth with it.
I think that everything listed here, and probably some things that haven't made the list yet, are related at least indirectly to our CLL. It's just hard to find doctors who understand the many possible issues related to a compromised immune system and the fact that everyone is affected differently and can also experience changes in how they are affected over time. It would be nice to at least have these issues mentioned in booklets like the ones LLS and other organizations put out - nothing extensive, but maybe a paragraph or two about possible health issues related to having a compromised immune system.
I hear ya Foggy ! This Alberta gal is suffering from a few ' goodies' herself. Sinus,psoriasis(sudden,widespread and persistent even all over my face)..foggy,spaced out and now weakness in neck (floppy head thing,you can actually google that one) and dizziness everyday now...so nice to be able to share all this with people who actually care and understand and know we are not just whiners and hyperchondriacs
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Year after CLL diagnosis~
which type of CLL fast progression or slow progression might be this?
CLL or SMZL differentiation or relation
More on Cimetidine (Tagamet) and CLL & NK Cell improvements 
