I have looked at some pinned articles and still wanted to put this question out there. As a person who is Stage 0, is in W&W who has healthy RBC, Platelets and Immunoglobulin numbers… am I still considered immunocompromised? My WBC number is currently around 34. I work in large crowds and I wonder whether I should go back to masking . I use CPAP…. do I need to sterilize it more frequently? Change my linens more frequently… alter my diet… avoid sick people…?
I hope that everyone has a nice day and enjoys a cheerful holiday season.
Thanks.
D
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Audioblender
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Yes. If you have the diagnosis, and your lymphocyte count is climbing because they have some sort of defect, by definition your immunity is affected/impaired.
It's impossible to say exactly how impaired/affected your immune system is. Some people report problems, some don't. But in this day & age, with respiratory viruses raging and documentation of increasing impairment with successive Covid infections, anything you care to do to decrease potential infection is bound to be helpful.
Also know that having CLL or other lymphoma leaves one susceptible to lung problems (pleural effusion & infection). With CLL, the leading cause/contributing factor to death is infection, and specifically respiratory infection. So it would be prudent to protect respiratory health.
I personally mask. You already have some lung issues if you need CPAP, so the "weekly minimum" of the machine/chamber plus daily cleaning of the various components should not be skipped. If you are ill with a respiratory thing, more often would be prudent to not re-infect. I personally change/air out bed linens more frequently when ill with something respiratory. If your diet is poor, eating more healthy food instead of processed/fast food will likely help. Avoiding sick people (i.e. respiratory illness) is always desirable, unless they are willing to wear at least a surgical mask & you are wearing at least an N95. In areas where people are coughing/sneezing out in the open, eye protection is a good idea too. Something as simple as moisturizing eyes drops, if you aren't interested in clear wraparound glasses like woodworkers and painters wear. The risk of infection through the eyes is very low, but it's not zero. That's why researchers working on Ebola and other lethal diseases are completely covered/wrapped up; they are not willing to chance even a low risk of something contaminating their hair, or clothing, or getting into their eyes.
I basically have set up a pseudo "air lock" at the front door. Outer shoes, pants, coats, hats are all left there. We swap pants & shoes, and layer tops so whatever was outside stays at/near the door. We don't carry potential germs all through the house, onto the couch or bed or dining room chairs. There's a bathroom near that entrance, and I have a row of hooks inside it, sometimes people swap clothing in there. Just trying to minimize any "outside things" from getting spread. I have seasonal allergies also, and this stop the pollens I react to from getting inside.
This point was driven home to me, from some of the early Covid studies where it was discovered that viable Covid virus was carried outside of sick patient rooms on the *tops* of healthcare staff shoes. It was expected that there were germs on the bottom, it was a surprise to discover being in a room also contaminated clothing that just was exposed to the contaminated air.
So I sort of duplicate what the infectious disease workers do. I always wear a hat & an outer layer, even in summer, that I peel off at the door. Not panicky or overly worried about infection, just, being prudent/cautious. It's similar to "bundling up for winter" and having to remove everything when coming inside, except I do it year 'round.
I think that all of us with CLL are to a greater or lesser degree immunocompromised. I am also at stage A0 on W&W for 7 years. My markers are good and I lead a very normal life. I don’t mask and I mix socially as I did before CLL. We are careful about hygiene and I try to avoid anyone that is clearly unwell. Strangely my wife who is younger and does not have CLL seems to get more coughs and colds than me ! I’m vaccinated with everything recommended and I eat healthily and take a lot of exercise. I think it’s a personal choice how you choose to live with your CLL . Perhaps a chat with your CLL doctor about lifestyle choices would help. Mine is supportive of my approach. Good luck and Happy Christmas.
I pretty much in same status as FairweatherSailor and agree with everything s/he says (with the exception I assume of sailing!). I have lost count of the number of COVID vaccinations (?7 or 8). My consultant is also of opinion 'well you need to live life well, otherwise what is the point! 'Public transport is probably my biggest worry, but I still go. Good luck and enjoy festivities!
I'm married to a retired hospital dietitian who headed up the department of nutrition and dietetics of a large London hospital so we eat a balanced diet - I respect her views !
While on W&W I lived a “normal” life. When the pandemic came I started to take more precautions. My brother in law is an engineer that specializes in air quality. He explained how viruses are transmitted through the air. I put an air purifier in my office and at home. Eventually I chose to close my office and work at home. I started treatment a year ago. My oncologist encouraged me to “live my life”. I wear a mask in crowds inside of buildings. I’ve been to some outside music festivals and did not wear a mask. I will eat in a restaurant if it’s fairly empty and choose a back table. It really is a risk assessment. A consultation with your doctor about it would be helpful. Take care. Hope this helped!🎄🎄🎄
CLL is a blood cancer and more importantly it is cancer of the immune system. I would take evasive action. I don't wear a mask other than in large crowds and hospitals, but I have not been hospitalized, other false alarm for sepsis. Blessings.
Hi. It's interesting that you have normal immunoglobulin levels. Mine are extremely low and I would have thought anyone with CLL would have low ones. I've had 7 or 8 vaccinations but in the early ones, when they were testing responses, I never made more than a few antibodies to the shots. So since you are "normal" you may not have to worry as much as others. In spite of my low numbers and low antibodies I have never contracted Covid. I try to social distance, putting myself in the back row and trying to leave space between me and others whenever possible. And I do wear a mask in gatherings that I "judge" might be too risky, in busy stores and in hospitals and public transport. I don't feel it has compromised my lifestyle excessively.
When I was first diagnosed with CLL, my early blood tests showed, not only the increasing Lymphocyte count, but mentioned "70% deformed cells". My doctor explained that I still had 30% working B-Lymphocytes, so I did have some protection. But any infection would hit harder and last longer, as the remaining functional lymphocytes would have their work cut out.
I don't get the deformed cell count with every blood test. I think it depends on which boxes on the form, the doctor or phlebotomist ticks on the day, when they send my bloods to the lab.
This level of protection was further confirmed during the later stages of the Covid pandemic, in Summer of 2021, when I took part in a study into the effects of the vaccines on immuno-compromised people. The university study also showed that I only had about 30% response to the vaccine compared to the general population. A small comfort but not great news.
I take this seriously and avoid crowded places and always carry a mask, even now. I always wash my hands as soon as I come back into the house etc. And take what precautions I can, not just as protection against Covid-19, but all respiratory infections.
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