Snoring and CLL

[Srob47]

Have noticed that since being diagnosed with CLL I have started snoring. Got so bad that most nights I'm banished to the spare room.

I know that snoring is common in middle aged men, and probably coincidental, but wondered if the CLL could be a factor as I'm not overweight and do not smoke. I do have fairly bulky lymph nodes in my neck and suffer with sinusitis causing a blocked nose at night, meaning that I breath though my mouth when sleeping.

I've had CLL for 10 years and am currently on watch and wait. It's got to the point where I would happily have treatment if it cured the snoring regardless of the CLL.

So I'm curious to know if anyone else has noticed a "link" between the two.

[CJinxy]

Hi Srob47...... My husband had the same issue for years before and after his diagnosis. He was referred to a specialist, tested negative for sleep apnea, had a MRI (which did show chronic sinusitis) and the list goes on, none of which helped his snoring. His right ear was totally blocked before he started treatment (which he finished a year ago). After the treatment his ear returned to normal and his snoring all but disappeared! He does still lightly snore sometimes but nothing like he did before. His oncologist did suggest that the chemo (BR) might help and we assume there must have been swelling that was eliminated with the treatment. We feel your pain......

[CLLCalifornia-USA]

When I told my doctor that I now snore, she had a suggestion that has worked for me. I had post nasal drip that was getting in the way of my breathing. She wrote a prescription for Flonase and told me to give it a few days for it to work. I use it when I wake up and before bed. It has made a huge difference. It has nothing to do with CLL but seasonal allergies. It works in your nose to block allergens such as pollen, dust mites, pet dander, mold, etc. and reduces swelling. Ask your doctor about trying it. It sure has helped me. Best of luck. Sally

[Lola69 in reply to CLLCalifornia-USA]

I love Flonase but was told to only use it in am as it contains cortisone and may cause u to stay awake.

[CLLCalifornia-USA in reply to Lola69]

I can’t sleep if I can’t breathe so taking it at night works for me.

[Lola69 in reply to CLLCalifornia-USA]

Have u tried elevating your head with 2 pillows?

saying u can’t breath is an ER case

[CLLCalifornia-USA in reply to Lola69]

Flonase works so that I can breathe easier. It works on the allergens that effect my breathing. Reducing the swelling.

[Lola69 in reply to CLLCalifornia-USA]

Whenever I hear breathing difficulties I think of asthma.

I have sinusitis and it does not affect my breathing. I do get headaches though and it’s not 12 months a year.

each case is different

[CLLCalifornia-USA in reply to Lola69]

You’re correct, each case is different. I can sleep when my nose isn’t stuffy.

[Ellieoak]

Dear Sorb, I was diagnosised about 1 year with CLL and I went for the sleep apnea test which confirmed that is what I needed. With the machine and water in the machine it cleared up my sinus. Don’t know if there is a connection but glad I have a machine.

[suz02 in reply to Ellieoak]

What machine is that?

[Cllcanada Top Poster CURE Hero in reply to suz02]

Commonly a CPAP machine

en.m.wikipedia.org/wiki/Con...

[Lola69 in reply to Cllcanada]

Sounds complex.

[Ellieoak in reply to Ellieoak]

Yes it is a CPAP machine.

[Cindy1462]

My consultant said bulky nodes in neck do cause snoring. I’m halfway through FCR and my snoring has improved a lot although it hasn’t gone completely.

[Srob47]

Thanks for the replies. Will definitely get checked out by my GP and will mention it to my haematologist on my next visit.

[lankisterguy Volunteer]

Hi Srob47,

As several others have replied- the connection is probably related to swollen lymph nodes.

During my last progression I had a blocked ear and more snoring than normal. An ENT doc that works closely with my CLL expert Hem/Onc said my adenoids and tonsils were enlarged just like my lymph nodes.

I said- but I had my tonsils and adenoids removed as a child-

he said- they grow back!

BTW- they are actually related to lymph nodes. entnet.org/content/tonsils-...

SNIP "WHAT ARE TONSILS AND ADENOIDS?

Tonsils and adenoids are similar to the lymph nodes or “glands” found in the neck, groin, and armpits. Tonsils are the two round lumps in the back of the throat. Adenoids are high in the throat behind the nose and the roof of the mouth (soft palate) and are not visible through the mouth or nose without special instruments."

Len

[Hoffy]

I have a resmed curve 10 Cpap machine. It takes care of my snoring. Also making sure you sleep on your side helps.

You. An get a sleep study to make sure

[YelvertonDevon]

Frivolous answer I know but Son just had a friend stay mid-twenties and his snoring was of operative proportions perhaps sometimes not everything can be blamed on CLL. PS His bedroom was situated away from ours!

[hanskloss]

I had experienced severe snoring with my CLL progression. Although the haematologist reacted with ignorance I knew it had to be CLL related. My tonsils and neck glands got so large, they were blocking my breathing pathways as soon as the muscles relaxed when I went into sleep. It could have been hardly called snoring...I was choking without air for 45 second every 2 minutes at night - I recorded myself so this is not a suspicion but a fact. Plain and simple - severe sleep apnea. I would wake up in the morning with extremely dry throat/mouth and tiredness resulting in fatigue throughout the day (i had to take naps throughout the day). I was completely surprised how easily this was being dismissed by the doctors...but realised that tonsils were not in their "area"...this is laryngology dept ...

I suffered through it until my treatment started, then it significantly reduced. I am still snoring a little bit and considering my 3 tonsils removed...can't commit but most likely will do it in the future...

[Oleboyredw-uk]

When I was diagnosed in 2012 one of the items I did not connect with CLL was the fact that my snoring was increasing.

I happened to comment on this in a discussion with my consultant, I think after I had a PET/CT scan. His response made me realise how easy it is to overlook the obvious. Basically, what he said was you have swollen nodes in your neck. They are not swollen out, they are swollen, so it is reasonable to assume there is some swelling inwards that will be impacting air flow - hence you are snoring.

Six weeks later after my first round of FCR I had hardly any snoring. I made a resolution to be more attentive to and better observe my body and try to understand more what it is telling me.

best, rob

[Oleboyredw-uk in reply to Oleboyredw-uk]

To add to the picture, just in case it is helpful. I was also suffering from Nocturia, I’d put this down to ‘old men have to get up for a pee in the night’ so just age creeping along. I’m not sure when it started but by June 2012 it could be twice a night. Just like the snoring it had gone after the first cycle of FCR. In my case it was because I had large abdominal nodes (just below the diaphragm) that had got to an 11cm by 7cm mass and was pushing my organs down putting pressure on my bladder.

best, rob

[catnapcrew]

My husband started snoring when lymph nodes in neck became enlarged. It got worse as his neck increased in size. As soon as the ibrutinib reduced the nodes snoring stopped.. Thank goodness. He had no prior sinus issues.

[AdrianUK in reply to catnapcrew]

Hi there, another possible cause of snoring in CLL seems to be enlarged tonsils. That’s what happened to me. I probably had fairly large tonsils anyway as I had snored for years. But this year, the year of my diagnosis with CLL, and without significant growth of lymph nodes, my tonsils grew. In fact they grew to such an extent that they met in The middle. After having them out as an emergency my breathing and sleep was so much better. And in my case at least, the fatigue I was feeling did get a little better for a short while as a result. If you click on my name you’ll be able to see my previous posts on this

[catnapcrew in reply to AdrianUK]

Cheers I will. Yes enlarged tonsils was noted in his ct scan prior yo treatment. Happy new year

[CLLWife in reply to AdrianUK]

You are giving me hope. My husband has enlarged tonsils was told it was due to the CLL. And he started snoring about a year ago. He starts Imbruvica this week. Hoping it will bring the inflammation of his tonsils and lymph nodes in his neck down so I can go back to sleeping on my bed!

[HopeME in reply to CLLWife]

Hi CLLWife: I was banished to the guest room almost nightly pre treatment. After treatment I haven’t been there once. Your husband has a good chance of getting some relief!