8 replies to this topic

[alvanalmon]

Hi all.  I'm new to this board.  I have been taking Gleevec for the past five years.  Three years into the treatment I began to have sinus problems and developed shortness of breath.  Now, every morning I wake up with congestion and go from one extreme:  feeling like there is cement in my nasal passages (i.e., can not breath) to gobs of running mucous.  For the past two years, almost every morning I wake up around 5am and spend 2 to 3 hours over the toilet blowing.  To avoid getting up at 5am I used to swallow the mucous but stopped after spending a night in the hospital with pneumonia.  I now have asthma. I live in a small community and my docs are great, but they don't know a lot about Gleevec.  They suggested that I have bad allergies and that I stop doing things that trigger this to happen.  I took an allergy test where they place allergens on your back for ten minutes and then return to see how big the dots grew.  Results for me:  I am allergic to everything apparently.  

In reading the "professional" clinical trial results on Drugs.com and doing a little research (including finding a post on this site (http://community.lls.org/thread/4908) I have discovered that sinusitis can be in the realm of side effects for this medication.  Also for Gleevec's FDA approved use in GIST, shortness of breath was reported in clinical trials and seems to be a side effect confused with having asthma.

Could someone confirm these side effects for me using the side effects listed on Drugs.com for gleevec?  Or from personal experience?  I just need something to approach my doctors so that I don't seem like a hypochondriac.

thank you

[Trey]

Gleevec can cause shortness of breath due to edema (fluid) in the cavity around the lungs.  It can also enhance sinus issues by the edema effect in the mucous of the throat and sinuses.

Your issues seem extreme, and could easily be a mixture of your regular allergy issues (confirmed by the allergy testing) along with Gleevec enhancement.  I doubt it is due to Gleevec alone.

[Susan61]

Hi:  I know what your going through. It could just be from your allergies, but I am not  a doctor.  I have had bad allergies since way before my diagnosis of CML and starting Gleevec.  I was so bad back then with the shortness of breath, and they told me it was Asthma.  Nothing they gave me helped.  I am talking about back in the early 80's.  Never did get a final diagnosis of Asthma.  Right now I have it worse than ever.  Feels like you have a waterfall going down the back of your throat, and then it feels like something is in the throat., and it makes my voice crackle too. Mine comes and goes, but yes the mornings are terrible with the sinus drainage.  I sit with a box of tissues. Then it gets better during the coarse of the day.  Now they tell me its COPD and allergies.  I have had them bad where I went into Pneumonia, but since I started getting my Pneumonia Vaccine I have not had Pneumonia.  I just know when that drip gets so bad that I can feel it in my chest I know its time for a prescription and not a over the counter drug.  I usually end up with a antibotic and Phenergan Cough Syrup for the cough.  It seems the allergies started early this year with everyone I have spoken to, and now we have the pollen all over everything outside. I am hoping to keep mine under control without the prescription drugs.  Let us know how you do.

Susan 61

[MJL]

I have always had sinus issues when I really get clogged up I use a "neti pot". It really works to quickly clear out your nasal passages. Beats spending hours trying to clear them out. P.S. When I first tried it my hubby refered to it as water boarding but honest it's not that bad........ Good luck.

MJL.

[alvanalmon]

I'm not accepting that this is just allergies or a bad day with my sinuses.  Not any more.  This has been going on too long.

I'm with Trey from Texas on this one.  Take a look at the clinical trial results on Drugs.com for Gleevec.  For the GIST trials, "shortness of breath" is code for asthma.  I fall within the 14% who has "trouble breathing" and also the 11% who eventually get sinusitis. This has gone on consistently in two different parts of the country now for two years (three years into this treatment).  It has to be more than allergies.  Alas, I am relieved that there is a logical explanation for this now.  The only way to be 100% sure would be to stop taking it and I'm not going to do that.      

[hannibellemo]

Good morning, Alvin,

I hadn't posted because my sinus issues began shortly after I started Sprycel; I had no problems when I was on G. It started out with really horrible headaches over my left eye and on the side of my nose. I did quite a bit of whining about that on this board.

Eventually went to an ENT and he did a CT that showed I had inflammation in my left frontal sinus and in my left anterior ethmoid sinus - exactly the area where I had pain. It did not respond to antibiotics so I went to Mayo for a 2nd opinion on proposed surgery. I had the surgery to remove the left ethmoid sinus and that allowed drainage from my frontal sinus and all has been fine since then.

No evidence that this was due to the Sprycel but I wonder. Many people have complained about sinus issues after starting Sprycel. It's difficult to realise that we do still get sick with other things when we have so much going on with the CML.

I hope you get some resolution with your problems. Good luck.

Pat

[alvanalmon]

Hi PAT.

Just looking for some reassurance that my symptoms are not caused by allergies.  Allergies is a lazy diagnosis.  My pet cat was diagnosed as having allergies by a lazy vet.  Turned out the cat had feline leukemia.  Point being, some doctors do not want to discover or admit that they may be dealing with one or more of the uncommon side effects of a drug.  

Is this whining?  I don't know but most of the Internet is full of communities that give support to one another and try to comfort or give advice on where to look for solutions.

Like I said, the only sure way to know is for me to come off of Gleevec.  But it is working for me and that is the biggest testament for continuing on with this MIRACLE of a drug.

GOOD LUCK MY FRIEND

 

[hannibellemo]

Hi, Alvin,

Hope you understand, I said I was whining at that time, I wasn't accusing you of whining. I was just relaying my experience with our TKIs and sinus stuff.

Pat

[Jerry.s]

I have had some drainage in the back of the throat for a while nothing like ever before. It started shortly after I started gleevec and it goes away and comes back through out the day. Maybe it's allergies mixed with gleevec