Dx in June. Started treatment on 400 mg Imatinib on July 5th. My eyes look like Bill Clinton's (lol), but these wicked mouth sores are a problem. They appear near the back of my tongue and the pain radiates into my ear and throat. I am rinsing with Orajel and will take Tylenol. The sore will eventually go away after a week or so, only to be replaced by another on the other side. Any wisdom? Thanks!
So grateful for this forum.
My Oncologist prescribed Magic Mouthwash...prescription. It helped. Sores eventually went away. Check with your oncologist. In the long run I was resistant to Gleevac and switched to Dasatinib. Do check with Dr. Best wishes. Gitel
Sorry to tell you the Bill Clinton eyes will never go away as long as you are on imatinib. They get a little better on doses lower than 400 mg. But it is a signature SE of Gleevec. So much so that you can easily pick out people who are taking Gleevec in the pictures of LLS events and promotions. Some people are just comfortable with their changed appearance and adapt or resign themselves gratefully. NOT ME!!!!!! I can report that the Gleevec Eyes get a whole lot better on dasatinib. I'd really like to hear from people who once had them on Gleevec, but do not have them on Bosulif. Anybody out there?
I had the mouth sores, too. The various treatments help (Biotene mounthwash helped me somewhat) but I found as long as I was on Gleevec, I would get them as you describe (and had never had them before in my life - not prone to them.) None on Sprycel.
Started on 600 mg Tasigna and about 6 months into treatment I had a series of swollen salivary gland incidents all followed by multiple mouth sores. I have used magic mouthwash (without the diphenhydramine due to potential qtc prologation which is a concern with Tasigna) and it helped though not tremendously. I know other people who swear my MM, so by all means give it a try. My derm also prescribed fluocinonide gel which is also helpful for topical use on individual sores. There is also some evidence that B-12 helps prevent these types of sores, so I take 1,000 mcg sublingual tablet daily and have no idea if it helps or not - LOL. The best relief for me has been time and a dose reduction down to 150 mg. Good luck - these types of side effects often get better with time so hang in there.
Do you need a prescription for magic mouthwash?
"Interested in making homemade Magic Mouthwash or Magic mouthwash OTC?
All you need is equal parts of liquid benadryl and maalox.
If you are trying to make this without a prescription then
use ibuprofen in place of lidocaine since you can only get
lidocaine by prescription as of Sep 20, 2017...
I am not recommending that you folks mix up your own Magic Mouth Wash, but
I found this recipe on the Internet. And as we all know the Internet is reliable.
Now if I can only find Magic Charm Fragrance...
Romo
