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CLL Support Association
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CLL congestion

Does anyone else with CLL have constant mucous/congestion. It is the middle of the winter so unlikely allergies plus the congestion has been there since I was diagnosed and put on watch and wait about 6 months ago. It isn’t horrible but really annoying to always have nose stopped up. I think I have read that this could be a CLL symptom.

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It may be caused by over production of mucus, by the mucosal tissues. CLL can often effect the immunoglobulin A levels, and they are producing antibodies to try and keep protecting the lining of the nose, respiratory system and gut...

My nose runs like a tap... and has for years...

If your nose is plugged it needs to be looked into, by an ENT doc...

~chris 🇨🇦

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My oncologist said it was a side effect from CLL. My adenoids became enlarged ( they are lymph tissue I think) and I ended up having to have tubes put in my ears. After BR tx, all is cleared up for the moment.

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Lots of us do complain of excess mucus. Whether it’s directly a symptom of CLL or more indirectly I’m not so sure.

It could be a worsening of allergies. I’ve certainly noticed that in me. I not only get the sniffles I get itchy skin.

It could also be low grade infection either viral or bacterial. Some of us do get fully fledged sinusitis.

It could be some kind of inflammatory response. When we talk about fatigue many of us say it feels like we are going down with the flu. Perhaps citokines as well as making us feel rubbish also influenced the mucus.

As is often the case with CLL we don’t really know fully what is going on in many cases. And the fact we have loads of cll cells around definitely has all kinds of effects on our bodies.

To help control my symptoms I am one of several in here on what I call the holy trinity of sinus medicines.

I take sterimar nasal spray (a saline that flushes the nose with an aim of stopping anything clogging up), Avamys (a steroid nose spray to control the inflammatory response), and high dose fexofenadine (oral antihistamine).

Oh and because I have also had clear bacterial throat infections I am also taking prophylactic azithromycin (a broad spectrum antibiotic) which probably helps a bit to prevent sinus infections developing.

Now of course the usual caveats apply you should see your own doctor, and perhaps an ENT for specific medical advice since what works for me won’t work for everyone. And sometimes people need sinus surgery or other issues addressed.

But as a general point I’ve given up on deciding whether a particular symptom is directly or indirectly caused by CLL or something else altogether and just take a much more aggressive approach to asking for investigation and symptomatic treatment of all odd new symptoms i experience. We definitely should make doctors our best friends in my view!

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Fungal infection... common in CLL, but quite rare in the non -immunocompromised population...

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That’s a lot of good information. Thanks for taking the time. I hope your CLL is staying under control. Mine is for the most part, except getting the flu a couple of times. The mucous/stuffiness some fatigue and swollen lymph nodes that I actually wouldn’t know about because they are inside my stomach and found by a ct scan. I am unmutated though and cd 38 positive at 47 years old. So not the best markers but not the very worst either.

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great answer Andrian x

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It crossed my mind to ask this community about something happening to myself earlier today while out walking my dog, as I’ve noticed I’m getting a sensation on my face that feels like a random prickly /tingling feeling, it initially started on each side of my nose but this morning I felt it on my cheeks and forehead. I now assume this is another symptom of the disease Ho hum we never stop learning😰

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I get a lot of phlegm and have to constantly clear my throat.

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Me too.

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Colour matters...

wexnermedical.osu.edu/blog/...

More on snot or not...

healthline.com/health/green...

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It goes away in the afternoon, its just really in the morning. As far as colours go mostly clear maybe a touch of green and sometimes a touch of red.

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My nose is also very dry as well with the phlegm.

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Make sure it’s not excess acid production that’s causing it.

I’ve had this since having a 3 month viral infection and it takes ages to clear in the morning. Seems like post nasal drip in my case but I’m persuaded towards Chris’s explanation because my IgA is almost non existent.

Newdawn

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Yes the worst is in the morning newdawn.

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I seem to always have a little runny nose and often lose my voice it’s pretty much always there.

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I've gained post natal drip, clearing my throat all the time, not very nice.

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Constant river of phlegm. Tired of it!

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My husband who has CLL doesn't have a blocked up nose but one that continually drips and also from the back of his nose/throat which makes him cough. He uses a nasal spray now and has had chest X-rays and sputum tests which are clear but this persists.

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I also have a constantly runny nose, but only from one nostril. It get pretty bothersome to always have to blow my nose or wipe it on my sleeve if I don't have tissues handy. It's not a lot,but a slow steady flow.

Chris

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Yep, I, too, have had 3 incidents of major plugged up sinus cavities since November.

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Same here, can hardly sleep during spring and autumn, due to stuffy nose. likely pollen, and other issues. Keeping very well hydrated, applying plain Vaseline in nostrils twice daily. Using Capesin nasal spray.Wearing an n95 mask, while out, gardening ,as much as possible. Have used neti pot with sterile water, at times. sometimes a cup of hot tea helps. Also nasal strips, humidifier.

Using steroid, other sprays very, very sparingly. these have terrible rebound effects, and nasal mucosa rapidly gets accustomed to them.

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Yes l do and sore throat constantly and fatigue is never far away

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I have it too. I have constant drainage from nose to chest and a hard cough. It seems like it is my new normal. I’ve been wondering if I need to go to the Dr. I take a decongestant everyday.

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I'm not a medic but I believe daily decongestant can in fact make it worse, might be an idea to visit your doc and see what he/she has to offer

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Yes, I’m 55 now, got my diagnosis of CLL when I was 40. I thought I developed allergies in my early 30’s, I had the whole series of allergy tests done and all were negative. I went to a pulmonary dr and he put me on meds. We found the right ones. I use Zyrtec (generic is cheaper) and nasal spray year round, I never skip a day. I also add Tylenol sinus when overly mucous. I hope this helps!

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Same here! Zyrtec is all that works for me. I use a saline nose wash morning and evening as well.

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I had sinus infections with a lot of nasal discharge together with chest congestion twice for 2 month periods last Fall and again this winter. MY oncologist started me on monthly IVIG infusions after the second episode and it clear things up in a reasonable short period of time. Worth a try for you. John, the umpireman.

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Yes and nothing works to relieve it. I have tried Mucinex, all the allergy meds, and even a flush with a netipot but still have it. Very frustrating

Oncologist doesn’t think it is related to CLL

But you have just confirmed it is

Thanks

Richard

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I was diagnosed 2 years ago and am on Watch and Wait as well. I have been experiencing coughing up flem but not super congested. I am not sure if it’s related to our CLL.

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Bryanb, I have similar symptoms and these sinus headaches, chest congestion and stuffy nose are not fun. Ten months ago and one month before I received my annual blood draw and was diagnosed with CLL, a chronic sinus headache began. In the past, I rarely had headaches. After three months of constant headaches and stuffy nose, my internist sent me for an MRI to rule out polyps or growths. My brain and sinuses were normal...hmmmmm good to know ha ha. She recommended I use Flonase, an over the counter steroid nasal spray and I take Aleve with food, which has helped a lot. During the first month of my diagnosis, I asked my internist if these headaches could be CLL related, she made fun of me and replied, leave the doctoring to me. A bit of a grrrrr... from me. Since then I added a wonderful CLL specialist to my medical team, when I asked him about the sinus headaches and congestions. He replied most definitely this is CLL as CLL is an inflammatory disease and the inflammation of your sinuses are causing the headaches. As a newly diagnosed CLLer with moderate time to treatment, I notice inflammation in other areas as well. I see a dentist every four months and he says even though I have no build up on my teeth, (I floss, water pik and sonicare my teeth daily), my gums are inflamed or as he calls it "angry" and he sees this in other patients with similar blood disorders. My CLL oncologist, one of the tops in this field, is the one I believe and the light bulb came on when he related how CLL is an inflammatory disease. My sinus headache, stuffy nose, occasional chest congestion and angry gums are part of the inflammation I have come to live with. Not fun, but hopefully you can relate.

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I hope your headaches get better. Luckily I haven’t had those but quite a few people over the last year have told me my jaws look swollen. For some odd reason the right side more. No doctor knows the answer why but I bet it has something to do with inflammation CLL can cause. My teeth are in good shape though so don’t think mine is coming from teeth or gums. Thanks for the info.

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My husband’s nurses suggested Claritin D for bone and joint pain while on chemo and taking Neulasta shot. He remains on it still 7 years later and uses nasal snore strips on his nose at night.

Blessings

Farrpottery

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I have had allergies for years about twice a year they get worse but I to have noticed it is more ongoing this winter. Although the weather has been different this winter. I am hoping for some relief after spring.

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I have had the same experience and hope after the rainy spring time it will get better. Never had mucous I couldnt get rid of before though.

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Whether the dryness, congestion and/or mucus is allergy related or not, I have had the best luck minimizing it with drinking more water and eliminating dairy -all dairy milk, cheese, yogurt, ice cream, etc. Might try an elimination diet for a few weeks and see if it helps minimize or eliminate the issue. There are also moisturizing nasal sprays as well (saline solution, nettie pot, etc.) as mentioned below - can flush out the nasal passages to get rid of the mucus.

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Even before my CLL dx, I had stuffy sinuses as far back as I can remember. My ENT says that I have good turbinates and no deviated septum. I've had CT of the head a couple of times.

I had several sinus infections in 2017/18 that lasted for months. Cultures showed they were bacterial - but different bacteria each time. In those cases, I had a blocked and aching ear and nagging cough due to post nasal drip. I used a netipot, Allegra 180mg, psuedophedrine 240mg, and flonase with no apparent effect. I do have pollen allergies. Each eventually resolved with different antibiotics plus steroid (once).

My allergist immunologist had done titres for pneumovax23 - checking the Ig response to the vaccine. I did poorly. Even though my IgG level was 507, I stared on SCIG (subcutaneous immunoglobulin), which is a bit easier on patients than IVIG. No infections since then. But still have stuffy sinuses as I did before CLL dx. We plan to stop the SCIG for a month or so, and check the natural levels again since last year. I'm still stage 0, but the Ig's had dropped steadily since the beginning.

Recently, I started Flowmax (Tamsulosin) for benign prostate hyperplasia that many, if not most older guys get to some degree (I'm 64). Boy, did it make my sinus congestion worse!! But timing of the dose is everything. I take the pseudoephedrine first at about 9 or 10pm, then just before bed, I take the Flowmax.

I still wake up stuffy, as I have my entire life. I'm thinking that my capillaries really change when I lay down. Haven't found any gene combination for it yet. But for me, it's probably genetic.

I do still rinse my sinuses nightly - using a bottle instead of the netipot.

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I have and always have had very bad fall and winter allergies. Winter is mostly dust and mold and animal dander. I didn’t have noticeable spring and summer allergies until I was pregnant with my daughter (she will be 7 this month).

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I think we're on to something here. I too have a cough that goes on for 6 months or more. Knowing this is pretty common is comforting.

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