After all these years, my onc prescribed me what she calls a "Stomatitis Cocktail". She thinks I get the sores because of my persistent low white count (I am usually around 2 for the last 3 years with one blip to 3 and once to 4). She said it works for her other leukemia patients on chemotherapy (might I add that even though a TKI is not chemo, it may cause low white counts in some people which in turn may cause ulcer-causing fungi in the mouth to stick around after finding a great rent-free pad).
The cocktail consists of Nystatin 100000 (antifungal), Dexamethasone (man-made steroid), Diphenhydramine (antihistamine/eg. Benedryl), and Doxycycline (another man-made steroid--eg. Prednisone). It was suggested to me that I could swish with 5ml 4 times daily to ward off any sores, or swish or apply directly to sores when they occur.
Since using the drug since last Tuesday, all of a sudden cannot sleep. I became extremely exhausted, which is usually not a problem for me. Therefore, I will switch to using it when I feel a break out coming. Not sure why it is making me sleepless, (I have two little kids, so insomnia is not on the top of my list of problems, however, occasional and mild exhaustion is, but never like this). I am guessing it could be the steroids (I take no other drugs besides dasatinib). I did not take the cocktail yesterday, and my sleeplessness and exhaustion went away, (it really scared me because I was certain I suddenly slipped into blast crisis). Nevertheless, the cocktail seems to work. I must have some kind of Candida, (common fungi of cancer sufferers--as related to suppressed immune system), in my mouth . However, I will use the cocktail as needed since it appears to steal my sleep.
Some of the drugs in the mix contain other ingredients, such as, benzaldehyde, edetate calcium disodium, meth-ylparaben and propylparaben, some which may be cancer inducing. Generally, the steroids, (also cancer causing--boy you just cannot win...taking drugs, eating, breathing, etc.), although it is unclear how the steroids actually do this, (and that is always scary for me, like throwing darts until it hits a a target), they have anti-inflammatory properties, are able to alter immune system responses, and may cause cell death in some types of leukemia (most likely not CML).
Taking the cocktail when the breakouts just start seems to be a better route. I had a sore coming out on my tongue when I started the cocktail, and in two days it was gone (a miracle). Nevertheless, I am grateful for something that may provide relief. I will update how this cocktail keeps working and if it does. Chronic and large sores can be extremely life altering and depreciating, (people have already commented about how I talk---I always say I bit my tongue---and eating & drinking is a nightmare--and there is no let up after a chemotherapy regimen as we are indefinitely on therapy). Doctors on the whole do not suffer as we do, so if it does not concern the disease directly, our comfort is often not high on their list of priorities or concerns (side effects can be annoying flies buzzing around unless suddenly life threatening). The whole body is rarely taken into consideration. Thank goodness for this board!
All the best to my fellow mouth ulcer sufferers,
P.S. I read that, table salt, sodium bicarbonate (baking soda) and hydrogen peroxide have antimicrobial properties and my help with minor oral inflammation. However, they are probably ineffective in preventing or reducing inflammation due to chronic mouth ulcers. I am not sure how calcium carbonate works, but if it is harmless and helps, then I guess you have to go with it. Who knows for sure what each of our genetic make up responds to?