So when one gets a "common cold," and has CLL progressing but still in W&W, should one expect to get a worse cold than one would've before the CLL took hold? In the 6 years since diagnosis with 13q/unmutated CLL, my numbers have been creeping up, with ALC recently topping at about 30K, and WBC just over 40K. All other measures are within normal limits and I have no symptoms.
In the years since the pandemic unfolding in March 2020, and up until this fall, I was reasonably obedient with wearing a mask and avoiding crowds. I didn't fly anywhere and I got all recommended vaccines. I eat a Mediterranean diet for the most part, and try to get fresh air and exercise more or less regularly. I remained very healthy, actually, with no Covid, and not even a cold.
On Halloween 2023, after returning from my 80 year old sister's birthday in Norway, I got diagnosed with Covid. I took Paxlovid early and it put the breaks on symptoms, so I was not bothered much by the 5 days of mild headache, stuffiness, and cough. Then I was fine.
One month later careless with masking and crowds, I started symptoms again, but tested negative for Covid. After 7 days of symptoms, feeling worse than I did at any point with Covid, today I conferred with the nurse practitioner, and she gave me a script for antibiotics to address what's presumed to be a sinus infection. I have no fever, but intense congestion, a wicked cough that is unproductive and painful, and breathing a little labored (though oxygen saturation is ok). Feels like a bad cold, worse than I'm used to pre-2020.
Please forgive the rambling, but as CLL moves on, should I expect that the impact includes rougher colds and a tougher time getting over them? Does it make sense that I'd return to religiously wearing a mask if I'd like to avoid those airborne germs? Or is it worse because I've spent a few years without germ exposure?
This may be a question that's far more technical than I'll be able to understand an answer to, but I'm trying to wrap my head around what "immune compromised" actually means.
Many thanks to all who read these posts and answer with kindness and skill. It sure helps to have company on the CLL journey.
Lynn
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You don't need "germ exposure" as an adult to maintain a healthy immune system. Having more frequent, as well as longer lasting infections, is common as ones immune system ceases to function optimally.
If you're not masking/protecting your eyes, you will be more likely than a "normal immunity" person to get various respiratory illnesses. I know someone who realized his "yearly crud" went away when he masked, so he now wears them on public transportation and in certain crowd (grocery store) situations. He has "normal" immunity but realized that masks actually do help prevent infection, so he continues to wear them.
I think it's a toss up as to exactly how the impairment affects us, since we are so individual. I personally experience it seems to "take longer" when I catch something compared to decades ago. Some here report feeling extremely ill. I am not sure there is any hard data correlating who gets the worst symptoms, or has longer illness.
If you aren't getting at least yearly immune globulin testing, consider doing this as a baseline of sorts. You will see if you tend to run low, or normal, or whatever. Then the standard bloodwork panel that often includes an albumin/globulin ratio in addition to total serum proteins, will give you an idea if your personal antibodies are fluctuating. It seems like when I am under treatment, my doc tests my immune globulin levels several times a year, but doesn't do it as often when I am in a remission. I have not had a problem with recurrent infection, though. People experiencing it will likely be more closely monitored.
I take "immune compromised" to mean my immune system isn't functioning optimally, and is unpredictable. So my personal "best practice" recommendation is to avoid exposure when feasible, and note symptoms/see a doctor sooner rather than later. It's annoying sometimes to do the work journaling my health symptoms (with pics of skin things) but I think it's kept me out of the hospital so far. I've had a number of infections, but nothing requiring hospitalization or with long-term adverse affects that I can tell.
Thanks, Sofia Deo, for your thoughtful reply. You take smart steps to control what you can, and it's well worth it. I'm definitely taking in all the feedback, and planning to up my efforts to prevent infections moving forward. So far my immunoglobulin #s have not been bad, but I'm going to watch all that more closely. Most clearly, I'm back to masks! and to avoiding crowds. Here's to a peaceful and healthy new year for all of us!
If you are interested, I have written before about the technology that NASA developed for infection control now available for commercial and residential applications. The 2 websites in the US are airoasis.com and hypoair.com. I don't have their HEPA units, but the IonicAir UV, Air Angel (for car & travel), Germ Defender (bathrooms at home & when traveling) plus a Bi-Polar in our HVAC. I don't have any financial interest in this company, I just like & recommend their products. I have other HEPA type units from other companies so I haven't purchased theirs. I have a sanitizer at each outside doorway with a HEPA nearby as recommended, and we change our outdoor clothes/shoes at the door. So I layer shirts & leave the outermost one at the door in summer, and swap pants/shoes year round.
Anyway, we tested this shortly after getting all this tech. Previously I had room air cleaners due to seasonal & dust allergies; they helped with that, but I still got occasional respiratory illnesses. Partner was sick at FIL's, we think it was early Covid, the entire small town had most everyone sick with roughly the same severe respiratory infection. FIL was already sick when they arrived at his place, & since he coughed & sneezed out in the open constantly they caught it.
After a few weeks I was sure they were all re-infecting one another, since no one was cleaning or doing anything re: preventing spread. I had him drive home, to test the tech. Up until this point, I would always catch any (rare) cold/illness he got.
I did not catch this one. I did other things like swap pillowcases daily, and air bedding daily, and cleaned handles, light switches, etc for things he touched. But I do think these sanitizers, which kill bacteria & viruses on surfaces/in the air, were a major factor. My partner recovered shortly after coming back, weeks before the others.
So if you are willing to spend some money & deal with the hassle of cleaning/maintenance, this or some other brand of air cleaner/sanitizers could decrease your chances of getting really ill. Because I am sure I am exposed to things, but they don't stay around the house so any viral/bacterial loads are decreased.
I do have an Infection Control background, these things that I do have science behind them.
Really fascinating, Sofia Deo. It's like a whole new world that I never thought about much before. I worked in education for 35 years and schools are germ breeding sites. But I'm retired now, and it's possible to incorporate much greater care into our lives. I'll look into the efforts you mentioned. Thanks so much.
I have seen discussion that *relative humidity* inside a home is a major factor, not so much temperature, although temp is important. Too low of a humidity irritates our lungs, leaving them more susceptible for something to grab on to. Too high would also be counter productive, since molds and mildews can easily grow. Higher temps would tend to inactivate viruses as opposed to lower ones.
The biggest takeaways I personally had from these studies, is when I read that that viable Covid virus was found on top of the shoes of hospital staff coming out of patient rooms. And that the virus could live up to 24 hours on paper. It's why I swap clothing; I put up a rack of hooks, and the closest bathroom has a row of hooks along the wall, when one can't swap at the doorway. It's the closest thing to "disposable infection control garments" one can do at home, without the expense. I also leave mail/packages at the door for a day. Groceries, I just wore my dishwashing gloves to put stuff away during the height of the pandemic. I tend to "buy extra" of non perishables which get put in a pantry so they can sit around awhile before we are handling them/out in the kitchen.
So by decreasing viral load around the house in general by not carrying outside things throughout the house, letting outside things sit a bit before handling, and aggressively wiping things/airing things when someone is actively ill, I think will benefit, even if one doesn't want to have the air sanitizers/cleaners.
Generally with CLL, it's usual for a gradual decline in our ability to make antibodies/immunoglobulins, plus our ability to make white blood cells also falls as our bone marrow becomes more infiltrated, with neutrophil counts being particularly important. (Remember also that everyone is also seeing a drop in immunity with aging.)
So in general, expect colds to be more severe, with a higher risk of secondary infection complications (pneumonia being the potential killer - hence the importance of prevnar vaccinations.)
People with healthy immune systems are obviously happy to accept the trade off of not bothering to mask or expect public places to be well ventilated for the occasional infection. They also (mostly) don't concern themselves with whether they might be passing on their infections to others that might not survive the infection that was only a minor inconvenience to them. They get to boost their antibody production, with which we struggle, particularly if we are in treatment. Some of us might manage fine with the occasional respiratory infection, CLL being so heterogeneous. For others it may turn into a fatal case of pneumonia, even with vaccination. It's a risk/reward assessment we all need to make. Unfortunately, blood counts are only a rough guide to our level of protection.
That society can pretty well eliminate respiratory infections was reasonably well proven during the early pandemic years - before vaccinations enabled most of the world to return to normal and life for most went back to normal.
Has anyone, especially someone on treatment, had the virus that causes the "common cold" and if so, how long were you sick?
I have been ill for a week. Severe malaise, head ache, fatigue, body aches, runny nose and productive cough and fevers in the low 100 range
I had 2 negative COVID tests, and then on day 5 a viral panel done with the wrong swab so I had to repeat on day 7.
I'm on Ven and ended Obin on Aug 7
The test results 7 days after symptoms were positive for a Adeno Virus or "common Cold" Which has no antiviral Rx.
it also was positive for enterovirus which supposedly can cause polio but I thought this was eradicated decades ago and I received all my polio vaccines as a kid. It can also cause cold and flu symptoms and has no antiviral Rx.
All else was Neg like COVID, multiple strains of influenza, parainfluenza, pertussis, mycoplasma and a slew of others.
After 9 days I was hoping to feel better. Although cough and congestion and runny nose have nearly subsided, the fatigue and malaise have been relentless. Pseudoephedrine does give a bit of a boost in energy.
Lynn, of relevance to your question about the effectiveness of masking, etc, Canadian Dr Tyler Black has just reported his non-peer reviewed assessment of the effectiveness of Non-Pharmaceutical Interventions (NPIs) in reducing the number of deaths in Canadian children under the age of 5 from respiratory infections. He posed the hypothesis "Mortality from all infections will decrease significantly from expected values during 2020 and 2021, and start returning in 2022+." then analysed the data from Statistics Canada to test his hypothesis. He concluded, "In Canada, the 2020-2021 time period, marked by society and families extensively using NPIs, was associated with a dramatic reduction in childhood mortality due to infectious causes. This reduction reverted in 2022 at the same time that Canadian measures relaxed."
Neil, Thank you for your informative reply to me (and for being a most amazing moderator on this site!) I am definitely masking conscientiously from now on. I don't want to be paying the price for something I could positively impact with small effort. Here's to a healthy winter!
I believe Immuno Compromised means that you cannot fight back as good as you once could. You need more protection from infection & more support if you get infected.
I didn’t get Covid until April 2021 but my WBC’s started elevating as soon as Covid hit the scene in 2020. I started masking up as soon as I heard about this global plandemic in Jan/Feb, before the Shut Down in March 2020. Covid almost killed me with a Cytokine Storm of epic proportions. I had a 103.8 temp that would not break with antibiotics or Tylenol. I was producing so much phlegm that I was simultaneously drowning & on fire 🔥. I went to the hospital & they refused to do anything until I demanded an Arterial Blood Gas & they compromised with a Venous Blood Gases, afterwards they wanted to admit me but I declined after they already said that they would only watch me & not even give me oxygen. I demanded IV steroids because that is what my Pulmonologist office wanted me to have. I got it & then the next day off to NYU for the Monoclonal Antibodies. Back home on Natural Remedies & then my fever broke & I slowly returned to normal.
Funny thing with Covid, it dropped my WBC’s back to the teens after reaching 30’s. My doctor said not to do anything for 90 days for my body to calm down or otherwise we’d be chasing something that wasn’t there & he was so right. I had an Oncology appt 60 days in & I did not recognize my bloodwork, everything looked normal. However 6mos later the WBC’s were climbing & Plts we’re dropping. I got hit with the worst Sinusitis in my life, it took 6 weeks & 2 different antibiotics to clear it up.
Sinusitis from hell was May 2022 but right after that I had to push for a CT Scan & in Sept 2022 I seen the ‘Multiple Water Balloons’ 🎈 everywhere. By Oct WBCs doubled to 89 & I was stage 4 after 13yrs of W&W. I still wasn’t convinced even with Plts 105-80’s, it was when my Hgb dropped in March to 9.8 that I knew the gig was up! Started treatment right after my Mom’s Birthday & her 10th Anniversary of Death, April 24, 2023.
Treatment for me was very bumpy on full dose but now adjusting after 7 months on 1/2 dose. WBC/ALCs are in the teens, Plts only up to 90’s & Hgb 12’s. All my Asthma symptoms I grew out of decades ago are back though, so I stay masked, avoid crowds & take the best care of me as possible. I suffer all the major side effects of Zanubrutinib but I don’t complain, its 14yrs & I am still here. I celebrated my twin son’s 28th Birthday & I don’t know people with other cancers living this long🙌🏾 #AttitudeofGratitude🙏🏾
My Twin Sons, Malcolm & Martin’s 28th Birthday. I have had CLL 1/2 their lives😳
Coach Vera, I love your attitude of gratitude! And your colorful descriptions would be funny if they weren't so potentially serious. You're a great advertisement for self-advocacy and keeping on top of one's own health care. I think the importance of that is just coming home to me.
Thanks so much for your valuable reply. I'm so glad that you survived Covid! and you now deeply know the reason for prevention steps. I will be engaging in those to a much greater level than I have in the years up to now.
Your twin sons are beautiful! and I am glad to my core that you've been surviving this CLL business with grace. I have kids 31 and 34, step children 34 and 37, and now two grandchildren 2 and 6 mos. I feel blessed. I hope to have a lot more years to enjoy with them, too! With gratitude to you!! Lynn
Thank you, definitely here for the inspiration & encouragement. CLL sucks but it could be far far worst. Now we all have the best excuse to take the best care of ourselves. Enjoy your Life!!! Selfcare is not Selfish🙌🏾
I can catch a cold in October/November and I'll still have it into May. Takes a week with temperatures in the high teens before I'm not stuffed up. Having nasal polyps doesn't help.
Thanks Skyshark for sharing your reality! It sure is better to handle a bad thing with good company. I appreciate hearing what I'll need to wrap my head around. I was ignoring too much. Thanks again, Lynn
I’ve had a cold/upper respiratory infection for three weeks and have never had one this long that I can’t seem to beat. It seems to get better for a day or two and then back again. My mask is definitely going back on when out!! Chest X-ray normal last week but will stay in touch w doc. I can hear wheezing but X-ray was clear 🤷🏻♀️
Thanks, Ghounds, for sharing. I've certainly got to up my game with prevention. I'm learning. And I really appreciate the company on this journey we don't want to be on!
It was covid that started a never ending cycle of sinusitis and blocked ears ... ended up being sick for about 5 months, unable to clear the infection and ended up having sepsis...so yes, an ordinary cold can end up causing lots of issues for us CLL folk...I had covid twice and it always caused a long term illness and issues...just take it easy, take the antibiotics, hope they gave you a longer course and something stronger. My immunologist wrote a letter to my GP - any upper respiratory infection and I should get a two week course of Co-Amoxiclav and she now insists that they test my phlegm too to confirm the antibiotics are the right ones to take...Hope you get better soon.
Thanks, Poodle2, for the additional ideas about handling this in the future. I'm starting soon with a new GP and will be attentive to the precautions. I used to think of myself as a healthy and hardy person, and was quite careless, but I need to let go of that image. Hope your Holidays are Peaceful and Healthy.
hi Lynn. If I have a cold and it starts to turn into a chest infection, it instantly becomes sore to cough. So it will be interesting to see if your pain on coughing goes away after 24 hrs of antibiotics.
Because I had so many infections before treatment, I began to notice little things that meant my infection was changing. I don’t get full blown symptoms with my cll because of the immunosuppression, so I try to remember those little differences that mean I’m getting an infection. I’m usually pretty ill before I get a temperature etc. so it’s useful to know before.
The cough is less painful now that I'm taking the antibiotics. Could be connected? I'm certainly going to work on more preventive measures as I move forward. Best to you on your journey. Thanks for the reply.
Oh I wish I knew who the out of hours GP who visited when I was feeling so rough from a normal cold, could read this post. Despite me being over 80 now, and having CLL for 13 years, she advised me to get out there and build up some immunity by getting infections.
I was stunned, decided she was either stupid or wanting to cull the older population.
You have to smile, which I did when I was feeling better.
Yours is the post that gets the prize for making me laugh! You touch upon the interesting observation I've made, that since CLL is rare, most medical folks know nothing much about it. Off-base advice seems to abound. It's what I like about this site. Glad the GP didn't manage to cull
Thanks for your post. Sometimes I hesitate to ask my presumed stupid question, but I'm glad I asked this one. I'm really learning from the replies. More preventive measures are in my future!
Melij, btw your cat is beautiful. Reminds me of my son's rescue cat that may be a Russian Blue. I read your profile, and grieve with you for the ways that this disease takes things from us. I hope you find a way back to activities you love, or alternates that feel satisfying. I've discovered nature in a whole new way these past 5+ years since my diagnosis in 2018. Even when that just means watching the remarkable birds that come to our feeders in the Finger Lakes, NY. Best to you with your journey. It truly is comforting to have company. Happy Holidays.
I was diagnosed in 2022 and I'm 56 yo, Rai Stage 0, W & W. Starting in childhood, I have been extra susceptible to getting sick with upper respiratory infections such as bronchitis, sinus infections, ear infections. Looking back now, I believe that I had asthma since childhood which was a player in the frequent and long U.R. infections. (Diagnosed with external asthma in 2009). I was well from the ages of 18-about 33- little to no infections. Beginning around 33, whenever I got sick- always in fall or winter, it would turn into a secondary infection requiring one or more round of antibiotics. For many years I would be sick for 4-6 months per year. Otherwise, I was strong and healthy, and so I dragged myself through life this way for years. (Wish I knew about masking back then- I would have done it to prevent being sick half the year). This period of constant illness ended around 2014, when I got pneumonia a couple times after picking up a cold. No one knew why this was happening. I had allergies so at one point I was getting allergy shots. I did continue to get intermittent moderate upper respiratory infections and in 2019 developed pericarditis with a pericardial effusion. My pulmonologist wrote me a note indicating that I should wear a mask at work, just as covid hit. So I mask ALL THE TIME. Whenever I am indoors around people, I mask. Given my background of illness, needless to say, I am terrfied of getting sick with CLL.
Thanks for your reply, esn. Funny that you mention your childhood illnesses, as I, too, had continual "swollen glands" and enlarged tonsils and URIs and bronchitis throughout my youth. I've often wondered what connection that may have to my current circumstance. Then in adulthood I also had at least yearly bouts, including pneumonia and bronchitis, aside from considering myself a strong and healthy person of nordic heritage. I used to consider it a strength that I'd go to work anyway (hacking and spreading my germs everywhere at work). Sheesh. It's masks for me now! And lots more care with prevention. Tough to wrap my head around a new body image, but it's worth it to avoid the stupid cough and stuffed head and potential for worse that I have now. Meanwhile I'm hoping for better health soon enough for the holidays to enjoy my kids' and grandkids' visits. Some things are worth a bit of risk. Best with your journey! Happy Holidays to you! Lynn
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