8 replies to this topic

[Dana]

I have had CML for 9 years now.  5 years on Gleevec and 4 years now on Sprycel.  I have a fairly good quality of life.  I get sinus infections, ear infections, and I have foliculitis all over my body, but worse on my scalp.  My doctor prescribes me 2 rounds of antibiotics and I finish them all and within in a few days, it starts to slowly come back.  This has been gaining on for several years and my onc says that my blood counts are good and I am as healthy as any one else!  I don't feel healthy!  Does anyone else have this problem and pretty soon the antibiotic will quit working!

Dana

[Lisal]

Hi
Dana,

I was diagnosed 5 years ago and seem to get sick way more often, but the onc keeps telling me that my blood couns are normal and getting sick is not related to the CML.    Mostly I get sinus infections.  I did see an allerist/imunologist and had blood tests and don't have allergies or immune dificiencies.  Sorry, I don't have any answers, but at least you know you're not the only one.

LIsa

[Happycat]

Lisa,

Has anyone checked your nasal passages for blockages, scarring or thickening?  I was getting sinus infections all the time, too, and had thickened tissues and narrow passages because of it. This in turn causes more infections, because you end up with a pool in your sinuses that just sits there and waits to breed some bacteria.

So I had surgery to rotorooter my sinuses, and hardly ever get colds or sinus infections anymore. It also cleared up some lung issues I was having, mild wheezing.

Just a thought.

Traci

[Sneezy12]

Excellent suggestion! Allergies should be of course, ruled out, but the next step is an ENT Consult, and usually a Rhinolaryngoscopy, and a CT Scan of the sinuses. Frank

[GerryL]

Hi Dana,

Have you had your zinc levels checked?

[Lisal]

Hi Traci & Frank

I was actually at ENT 4 times last fall.  I had a scope and a CT of the sinuses.  The ENT doc told me to see him in September before any issues start and he will help me try to prevent any issues.  He did mention surgery if nothing else works...

[Sneezy12]

I would definitely have an Allergy Evaluation before considering surgery. Frank

[Trey]

I have more sinus issues than before, but it is not likely caused by blood counts.  It is more likely that the sinus passages swell (part of the "hidden edema" issue) and can also bleed more easily.  The bleeding allows infections to get started since they are open wounds.  I use saline mist spray (even make my own salt water) and flush the sinuses with salt water any time I feel sinus issues coming on.  It solves the problem right away, and is a targeted approach which is far better for the body than antibiotics.

[Pin]

Yes, I get all sorts of infections more easily now too. I was diagnosed last June, and have been on Gleevec for just over a year now - I do think mine is related to low-ish blood counts. They have been normal, but when they drop out of the normal range like due to a stomach virus or something (last test they were down wcc = 3.2, neut = 1.75) I seem to pick up more other types of infections. My bladder keeps acting up and getting an infection every 2 or so months (like clockwork!). Not sure why, but it is incredibly frustrating...