Hey there everyone. About 4 weeks ago my husband got a bad cold. He just can’t seem to shake it and energy is down. He doesn’t want me calling the doctor for a cold. But at what point should I be concerned. We are in watch and wait.
Cold: Hey there everyone. About 4 weeks ago my... - CLL Support
Cold
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Nanatoo4
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start taking his temperature
Nanatoo4 in reply to
He hasn’t had a fever I have been taken his temperature
Colds being viral, all you can really do is watch for worsening symptoms, (such as his temperature that you are already monitoring), that could indicate he has developed a secondary bacterial infection that will benefit from antibiotics. It's important to drink more fluids than normal, to reduce the likelihood of congestion setting up a conducive environment for bacteria to thrive. Steam inhalations might be helpful too. Your husband might also need some encouragement to maintain a healthy diet if he's experiencing a loss of taste.
Longer lasting colds are unfortunately a reflection of our reduced immunity from CLL. Hopefully his cold will soon be gone.
Neil
Thank you. We eat super healthy. Cold is just lingering. And energy level is down. We leave for Europe next week and was hoping he would kick it before then.
Let's hope so. It's no fun travelling on an aircraft with congested sinuses. Due to the dry aircraft air, encourage your husband to drink lots of water on the aircraft. You can bring on board some empty drink bottles and refill them from the galley. On a recent trip, I noticed that the flight stewards left trays of drinks of juice and water sitting in the galley, but probably not best to drink those in case others have talked/coughed/sneezed over them.
Neil
Do you wear a mask on flights you take? I just can’t seem to be able to do this as it draws so much attention.
I always have - except when eating or drinking or being asked to remove it to confirm my identification against my passport picture. My wife, who didn't wear a mask picked up a cold while I didn't.
AussieNeil this is encouraging to hear. We wondered if a mask might help while on our 14 hour flight to see family. Obviously besides being a little uncomfortable....it can’t hurt.
Try 36 hours door to door, with over 20 hours in the air. Thankfully less hours on the way back due to a 200km tail wind for some of the trip 
Oh my... Our trip is actually 18 hour flight time, with 14 being the longest leg and I just can’t imagine anything longer! And yes a tail wind is always a god send😊
He won’t wear a mask but I have packed Lysol wipes and will be wiping downs the seat tray and everything else n site!!!
Hello, Nanatoo4. Sharing a couple relevant experiences:
1. I still remember the agony of having my eardrums rupture (in 1986!) during a plane trip with a head cold. This happened while we were descending to land. It felt like ice picks were stabbing into each ear, clear through to the brain! Thirty minutes of pure torture, followed by massive painful ear infections. The ENT doc I saw afterward said, "Don't ever get on an airplane with a head cold."
2. At my first appointment after diagnosis (Jan 2017), my oncologist warned me to seek treatment immediately for any POSSIBLE sign of infection. A month later, I went to an urgent care center after several days of a miserable head cold while out of town, revealed my CLL Dx; and was prescribed 10 days of Augmentin (antibiotic) along with a 5-day steroid pack. That doctor said it was critical to get ahead of any bacterial development.
I've had no CLL treatment.
Here is a link to general considerations of air travel with a cold:
cntraveler.com/story/flying...
Good luck to you in helping your husband.
Best wishes and safe travels,
Mary
Don't forget to wipe the edges of the tray and underneath where they seldom get wiped. Heaving with germs.
You might suggest he wear one so as not to spread his cold to others (he may not still be contagious but no one likes hearing someone coughing sneezing or nose blowing on a plane). Then by wearing one it’ll help prevent him picking up anything else. My husband never used to get sick then on one flight he caught a cold and was really sick with it and it went on for weeks. Next he got a really painful throat infection and after about 5 days ended up on antibiotics. Since then always a mask and nothing - and for over about 15 months he was flying monthly as he’s on a clinical trial - hasn’t caught anything. He says as a bonus it keeps the air in your nose moist so you don’t feel all dried out. He chews gum to keep the air in his mask fresh. Like Neil only takes it off to eat/drink. It’s really no big deal - I wear one too so I don’t catch anything and share it with him on holidays. Also hand sanitizer b4 eating. Have a great trip.
Be on the lookout for cough developing. That's one kind of opportunistic secondary infection that can arise in this situation. And doctor could probably treat that. Two years ago, before I started treatment, I had a small dry cough that would not go away for 8 weeks. Doctor gave me 5 days of Keflex, and I felt like a million bucks after that. Re-energized.
Four weeks is a quite long for a cold even for us.
Does he have a cough and sneezing? Or just one or the other? Or is it just congestion? Does he have muscle aches and pains like the flu?
I would be querying bacterial sinus infection by now. Tho it —is— true that we can take a long time to shift something viral. And if it’s a cough perhaps tonsillitis or even a chest infection. I am currently trying to get on top of what we believe to be a bacterial lingual tonsillitis (the second set of tonsils lower down the throat). It’s taken 3 weeks of a treatment dose of antibiotics so far on top of my ongoing prophylactic antibiotics despite the fact that the treatment dose did have a dramatic impact on the temperature I did have at the beginning and tachycardia (fast heart rate).
Honestly by now I’d be at the doctors (probably earlier actually....) They can do the following depending on what they think is relevant and whether the symptoms are nasal, allergy, or cough
1. Swab nose and throat looking for virus bacteria and dare I say it fungi. This may well lead to nothing but it may grow something relevant. The answer is not instant tho the flu swab can be interpreted quickly and I’ve been confirmed as having flu in a Hosptal A and E attendance.
2. Check bloods to see if neutrophils are ok and the extent of any inflammation which again may support the notion of a potential bacterial element. (A test called CRP was elevated two weeks ago and although my latest bout of symptoms are not yet fully abated we think we are on the right track as that test has come back to normal now)
3. Look at sinuses and the back of the throat via a nasal camera (ENT doctor, some A and E / ERs with on call ENT should be able to do this too. This is why we know I have currently got lingual tonsillitis rather than a more generalised throat infection.
4. Check the chest for signs of a chest infection (a definite sign of a need for antibiotics in case this is bacterial and as someone else mentioned it can start viral then become bacterial.
5. Check vital signs looking for fever, a faster heart rate, blood pressure changes altered blood oxygen saturation levels. A simple blood saturation finger device is a good investment for any CLL home.
Also it is sometimes worth considering wearing a smart watch to monitor heart rate. Concerningly a number of us don’t really get a fever until the infection is really quite bad. I actually had a clear cut diagnosed pneumonia with chest signs on the stethoscope, and x ray changes accompanied by runs of fast heart rates, dipping saturation and an inability to walk for several weeks without a temperature. On that occasion I only got a temp when I was beginning to develop sepsis. So initially short runs of fast heart rate that become longer and ultimately continuous are almost always a warning sign of a bacterial infection for me. Interestingly, the time when I did have the flu confirmed with swab the heart rate increases were not anything like as much as my normal response despite actually having a fever (rare in my case). There’s not enough known yet about long term heart rate monitoring by means of a watch but I do think that short runs of fast heart rate are an important sign of what may well be a bacterial infection at least in me. I don’t watch the heart rate obsessively but I have noticed that if I develop symptoms or indeed a fever very often looking back at the heart rate data there have been short runs of tachycardia over a few day’s before any actual symptoms occur
I should also say since many of the Symptoms of any infection are caused by the immune response many of us actually report milder local symptoms. Some propel for example say “I’ve never really developed a full on cold since I’ve had CLL I just have minor nasal congestion but feel even more dreadfully fatigued ar the time. This is another reason why we should beware that what might seem like mild symptoms may hide a developing more significant infection.
One other possibility is the development of an allergy type thing.
I don’t mean to alarm you but I’ve had excess nasal secretions including post nasal drip , congestion and the tell-tale itchiness of nose that makes you lean towards an allergy pretty much constantly since CLL diagnosis. My allergies became 100 times worse than they were before as the immune system becomes dysfunctional and this is something some others in here report.
If this is what is considered to be the issue here is my routine which keeps it almost completely in check (tho I am still aware of the symptoms particularly just before the treatment is due). This is not necessarily going to all be necessary or correct for everyone so as always consult a doctor for your own personalised care and prescription.
1. Nasal cleansing using a steril saline solution (brand I use is Sterimar). This keeps it flowing and may help
Reduce symptoms of inflammation and potentially make bacterial infections less likely due to snot not being static.
2. A topical spray combining steroids and local antihistamine. This in my case is called Dymista.
3. Antihistamines orally which also helps cover the constant intense skin irritation and itching that I also developed post diagnosis. I have ended up requiring four times the licensed dose of fexofenadine having tried several others (do not do that without medical supervision and prescription it is not right for every patient and heart health in particular during the up titration must be monitored)
It is possible doctors might advice antibiotics at this stage of a protracted cold even if they didn’t think there was a bacterial infection just to reduce the risk of that developing.
In many ways we should probably be under the care of an experienced immunologist but there are not enough to go round. We have a reduced immune system from before we are even diagnosed and this develops and worsens typically over time even if we are not treated and all current treatments seem to make this worse at least initially and can even cause neutropenia. For some of us our immunity becomes similar to a person with AIDS. And sadly even the best CLL experts are not necessarily as expert in managing that side of things as we might hope.
There is little research done on how we can best reduce the risk of developing an infection and then treat it when it does. But since I had pneumonia at the beginning it has really brought these issues into focus for me and my doctors. And the following are some principles that guide my own approach in consultation with them.
1. Social distancing from people with infections does work. For me this includes Not being in the same room as someone with any infection if I can possibly avoid it. Lots of hand washing. Trying to stop myself putting my hands to my mouth. Etc etc etc. Masks if used should be N99 and I did use those often on public transport especially if crowded (which the London tube always is...) until energy levels meant I stopped using it.
2. Even when not neutropenic having some common sense diet adjustments (eg I will tend to not eat reheated food, or the kinds of food pregnant people don’t eat etc)
3. Going to visit a doctor early when symptoms develop eg for confirmation the chest is clear etc.
4. Having a low threshold for antibiotic use at treatment dose.
5. Using longer courses of antibiotics to try and break the cycle of short course followed quickly by the same infection returning which is something I have otherwise got into often.
6. Straight to hospital if temp is above 38C / 100.4F or if symptoms become more severe.
7. Prophylactic anti infectives . In my case I take azithromycin, cotrimoxazole, aciclovir daily even if I don’t have an infection. Again this is not something every single patient with CLL should do, and opinion differs but many feel at least the last two of which should be used by anyone on or after current CLL treatments especially if lymphocyte counts are nice and low as you hope they will be after treatments.
Sorry this is a bit long!
Super advice at this time of increased infection potential. Currently off work and sleeping most of the time with upper respiratory infection which has pretty much knocked me for 6.
Adrian,
Great post full of critical advice for us. The 100.4 temp is the one that I still have a hard time with. Going straight to ER is prudent but tough unless I feel like a truck ran over me too. I think it’s situational. Depending where you are in your CLL travels.
Jeff
Thing is there’s say a 1/100 chance (or maybe less) that if you have a temp over 100.4/38 that you have sepsis or worse yet neutropenic sepsis. So that might mean 100 of us go to ER “unecesessarily” for 1 to have their life quite literally saved. And it only has to happen once.
Of course the other major advantage of going to A and E is they will do bloods and an X-ray if indicated and that will give all kinds of information to fill out the picture (has the neuts or lymphocytes suddenly changed, is the inflammatory markers up etc etc) which may help the doctors decide what the level of risk is.
I heard in a Facebook CLL forum recently about someone who just had a UTI and didn’t go quickly to a doctor (I would advocate a GP for that by the way typically unless significant fever or as you put it “feeling like death”). That person went to see a GP after a while into the illness...and died a couple of days later. Sorry to be sounding so scary.
I know of another CLLer who like me first knew they had CLL because they got a nasty pneumonia but they were ventilated for a month or so and their family thought they were a gonna.
For me I do remember before I went down with the pneumonia I had a cough for a few weeks and quite probably it Id gone to the doctor they’d have heard something milder and given me antibiotics. I should also say my mild antibiotics didn’t make much difference to me for the first few weeks and it was only when I finally got a temp and went to a specialist hospital that I was given more aggressive IV antibiotics (tazocin) and got better finally.
Another top tip: if you are started on an antibiotic it should make at least some difference within a few hours to no more than 48 hours. If it doesn’t that’s either evicence the infection isn’t bacteria or it’s time to change the antibiotics. Don’t just ignore it and merrily continue the first antibiotic.
In my own last situation the temp and pulse were radically better by the time I’d taken the second dose or shortly after. But they and the sore throat etc hadn’t completely gone and it’s been 3.5 weeks so far and we are persisting because if that initial response.
Adrian,
Your pneumonia bout sounded like mine. But I did go to my CLL doc at the time. At first they did nothing. Then later came x-rays and even a CT. Finally, one antibiotic and then another. A low grade fever began 2-3 weeks in at this point and finally the ER.
Full blown pneumonia and in the hospital for 3 weeks. It felt like trying to breathe through a straw.
I feel your pain. Yet I still struggle with the decision to go to the ER because often they know less about CLL than I do and in comes a Doc that’s lost.
Jeff
Ah... I go to ER at a major London teaching hospital (UCLH). that has on call “lymphoma registrars” (CLL is a lymphoma too...) who are one step away from becoming consultants and work under the top CLL specialists there during the day. They have taught the A and E docs what to do and after the initial review always come see you to figure out together what to do. If I need admission it’s usually to a specialist Haematolgy ward.
But if I had to go to another hospital I would say “I have blood cancer and am seriously immune compromised. I’m running a fever so I’ve been told by my professor to come and confirm this isn’t a sepsis”. And in fact even if I was at another hospital those lymphoma registrars can be contacted by the local Hosptal for advice over the phone and the nurse form our helpline will also phone ahead to the a and e on our behalf.
Over here three is a clear sepsis protocol that all hospitals should follow and it’s just about helping them to realise that’s the pathway. If you walk in and say the word yourself ... if anything happened and it was indeed sepsis the doctor would probably be stuck off for not excluding it.
Of course you can also edit that slightly to say “it’s possible I may be neutropenic too as I’ve been Warned that can happen suddenly wirh my condition (and even more so with treatment with ANY of the current or even latest treatments sadly).
Adrian,
I guess you’re fortunate to have such resources. Though I live in the states and travel to MDA for treatment, my hematologist is 80 something and suggested giving me monthly rituxin infusions as treatment just recently.
I moved here to live in the mountains and get away from Miami, Florida and all its ills but now I live in a medical wasteland.
Jeff
My CLL doc has told me I do not need to run to the ER for a temp of 100 and that I need to consider how I feel (like a truck ran over me), etc.
You are a wealth of knowledge. Thanks for sharing.
Best
Mark
Wealth of experience the last 2.5 years with several admissions and many time’s early action via the GP avoids it. And that’s actually a point the GP is often the best port of call for an early infection as their goal is to keep me out of hospital too (and they know the low threshold for antibiotic piece).
It’s all about the best doctor for the moment you are in. Oddly enough these lymphoma registrars are probably better if you have pneumonia developing than their bosses who aren’t dealing with that kind of thing during the average day.
I have also gone through the same and eventually went to see the doctor , turned out i had developed fluid on my lung which i had to have drained , wow instant relief but now have to wait on lab results on the fluid .
Advice for your husband go see the doctor .
Hi,
4 Weeks seems like an awfully long time to be fighting a cold, even with a compromised immunity. It seems reasonable to head to a Doctor and confirm it is “just a cold”. Either way both of you will have piece of mind on your vacation . With CLL, colds and infections can turn rather suddenly. My Doctor insists I travel with antibiotics, just in case.
Best,
Sandy
Nanatoo4,
AdrianUK mentioned the neutrophil levels. Those numbers can be checked with a blood lab CBC w/diff. You might consider having Igg, Igm, etc.. levels checked at the same time. These are some of the body's immune indicators.
As we all know, low levels of immune system influence can contribute to contracting illness and inhibit the bodies ability to fight it off. As already mentioned here, a fever is the indication that some outside help may be necessary.
Get some blood labs run, and watch your temperature close. Eat the good stuff and stay properly hydrated.
JM
It your going on a trip I would suggest you get into his Dr and request an antibiotic should any other symptoms come about. His Dr should check his lungs to make sure there is nothing to worry about and that there is no Plural Effusion.
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