CLL and sinusitis : Hi 9 years ago I was... - CLL Support

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CLL and sinusitis

hammyj
hammyj
14 Replies

Hi

9 years ago I was diagnosed with CLL. I have since had FCR and feel great. Over the last 12 months, my platelet count has dropped and I have had 2 bouts of sinusitis. Does anyone else have experience of this? Anyone got any advice or do I keep battling on?!

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Cllcanada
CllcanadaTop Poster CURE Hero

I have aspergillus fungi lodged way up in my sinuses... and my nose drains continuously...

Fungal infections are far more common in CLL than the average population, but GPs don't really know much about it. If it is bacterial, you might benefit from immunoglobulin infusions.. IVIG or SCIG.

I would get a referral to an ENT... doc and see if there is a mushroom patch up there... 🍄🍄🍄

Post treatment there is an issue as well with mucosal immunoglobulin A, our IgA counts drop, and unfortunately never return... the mucous is the protective layer of antibodies, so many CLL patients report over production and sinusitis.

Best to get it checked by a specialist...

IgA

en.m.wikipedia.org/wiki/Imm...

~chris

3 likes
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Spacee
Spacee
in reply to Cllcanada

Yes, it is on my “When to Call the Oncologist List” and I think he would refer to an ENT and probably knows a good one.

Linda

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Ladydi49
Ladydi49
in reply to Cllcanada

Do you think it would have shown up in a CT scan of the sinuses? The only thing that showed up on me was 4-5 ml thickening in the right maxillary sinus and 1-2 ml thickening on the left side. So the thought is they are chronically infected which is why antibiotics don't work but I'm afraid of surgery because I worry about getting an infection. A nurse friend of mine went through it and now she thinks she has mrsa

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hammyj
hammyj
in reply to Ladydi49

My specialist did talk about me having scans last time I saw him. I might speak to him about having one. Thanks

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Bill1288

I have been fighting sinus problems and infections for the past year and a half. Had chemotherapy and after 13 months relapsed. Am on Imbruvica now since August of 2017. I had an ENT and did the Sinusplasty. It did not help. Have had 3 sinus infections since that procedure. Given antibiotics each time and after just two days my sinuses start to clear up. But after about two weeks off the antibiotics I start having concerns again. My ENT says he can't see where any more surgery will help and does not want to keep giving me antibiotics. My hematologist/Oncologist is considering IVIG. But has not happened yet. I currently am rinsing my sinuses out in the morning and at night using the NeilMed sinus rinse. About a half hour after rinsing, I spray flonase once in each nostril. This has helped a lot. Hope you find some relief, as I know it is aggravating. Just a note also, I told my Ent that maybe I needed a longer dose of antibiotics, but was always given the 10 day regimen. But I just keep plugging and battling on.

Bill1288

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Ladydi49
Ladydi49
in reply to Bill1288

Hi Bill1288...my hematologist told me to not use Flonase as it could cause a fungal infection and, it contains a steroid which can lower immunity and cause shingles. That being said, I have been struggling with sinusitis and bronchitis off and on since last Oct. I have had 5 ivig infusions with another scheduled April 9th

1 like
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Bill1288
Bill1288
in reply to Ladydi49

Thank you, I will discuss with my hematologist in a few weeks at my visit. My ENT

put me on this regimen and he does know I have CLL. Wow!, so thank you for your info.

Bill1288

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Ladydi49
Ladydi49
in reply to Bill1288

Yes...do let me know what you find out

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MartiP2009

I too was diagnosed in 2009, did a round of FCR and have been on Imbruvica for the last 4 yrs. I too have bouts of sinusitis however in the last year I get gamma globulin infusions, at first every 6 weeks but about the 5th week out the sinusitus would return. I am now on every 4 weeks and that keeps it away. My antibodies IgA drops in the 400’s and that’s when the infections return including UTI’s. Has your dr checked your IgA?

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hammyj
hammyj
in reply to MartiP2009

I will ask him next check up. What is IgA? Thank you

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Cllcanada
CllcanadaTop Poster CURE Hero
in reply to hammyj

Immunoglobulin A...

en.m.wikipedia.org/wiki/Imm...

I think MartiP means IgG .. very different

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MartiP2009

Yes I’m sorry it’s IgG

1 like
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hammyj
hammyj
in reply to MartiP2009

Thanks 😆

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hammyj

Yes. He checks my IgG reguslarly

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