9 replies to this topic

[dawnhan]

Hi, everyone.  I was diagnosed 6/10, started on Gleevec 7/10, and switched to Sprycel 5/13.  One of my biggest side effects from Gleevec was mucositis/mouth sores and I went through different periods when I could only get through my days with magic mouthwash.  I finally had to switch to Sprycel because my esophagus had become so thin that I'd "injure" myself when I ate.  After switching to Sprycel, the problem became less intense but did not go away, until about a month ago.  Over the past 3+ years, I've tried various medicine or supplements, not to mention seeing different doctors, just to abate my pain. I think I've found a combination that helps, and my oncologist even got excited when I saw him last week because he has quite a few leukemia patients with similar mouth problems.  I feel I owe it to many people who have offered help, and perhaps my combination may be of help to others.  So here it goes:

one time per day: L-Lysine 1000 mg (1 pill) + L-Glutamine 1000 mg (1 pill) [I also take Vitamin D3 1000 iu]

I was only able to find L-glutamine at Walmart.  The other supplements are pretty commonplace.

If you or people you know suffer from mouth sores or mucositis regularly (I live to tell they can make your life very miserable), the above may help.

Gook luck.

[Tedsey]

Thanks for posting.  I tried just L-Lysine 1000mg and it didn't help.  How did you come up with this combo?  I have tried just about everything.  I commiserate.  The worst sores go down your throat. Just today, when I woke up, my last sore from a cluster finally closed.  And tonight I went out to eat!  Sadly, by the time I got home, I had another one brewing on my tongue.  But I remember stopping to say "thanks" for the 1 day without a sore.  I totally reveled in the feeling of what it is like to be ulcer-free.  I have learned to live with the pain as I am sure you did.  Hope this combination continues to work for you.  Unlike you, I had no sores on Gleevec, but got them when I started Sprycel.

Take care,

Tedsey

[dawnhan]

I had tried all kinds prior to L-lysine, which my insurance's assigned nurse recommended to me last year.  It was only helpful sometimes.  A friend recommended L-glutamine to me after I started on Sprycel and my mouth was still swelling on the inside and ulcers were constant companions.  Since L-lysine had helped a little last year, I decided to take both together.  I had mouth ulcers more than once a month, and each time they lasted more than 10 days.  Mouth sores had been with me continuously since Gleevec.  Since I started taking both L-lysine and L-glutamine in August, my mouth ulcers have not returned and my mouth sores have not flared.

I don't think L-lysine + L-glutamine together work overnight, although I noticed a difference in me in about 2-3 days.   

[Tedsey]

Thank you again for the info.  I actually saw my hem/onc today.  I told her about the mouth sores.  I have been to an oral pathologist, a few dentists, and all have tried to be helpful, but no one could come up with anything (however, my present dentist said he could lazer the sores, but my sores are so frequent, I'd be running every other day---he and his young daughter get them too and he takes anti-viral meds and swears by them). 

Anyway, I commiserate with you.  My sores last over a month and are usually about a cm. in diameter or all over my tongue.  Anyway, maybe my cries fell upon deaf ears before today, or my voice was just a little clearer, but my hem/onc said she could prescribe anti viral meds (my present dentist also said he could do that my last visit).  I will go tomorrow and pick up a mix of a steroid, antiviral and something else I forgot.  I could swish with it daily or use it when I have a sore.  I'll post if it works and what it is.  I am a little hesitant about taking more synthetic drugs, but we shall see... (I'd much rather know the root of the problem instead of just throwing meds at it).  My kids are going to become stupid since I avoid reading to them because I can barely talk.  And I like to talk!  I could live with it, and I have, but I have been so miserable for years (I have only recently reassessed my quality of life due to the sores---I must say doing myself in was in the equation, it kinda scared me, but no worries.  I could never do that!).

Just one last question.  Before TKIs, did you get mouth sores?  I have gotten them my whole life (but ironically never the 9 months I was on Gleevec).  The sores were chronic when I was a kid, but I got them infrequently, (and very small ones), as a young adult.  I wonder if Sprycel exacerbates an issue we already have?  However, my WBC is low at 2.5, and my onc is suspicious my sores are viral since other patients on chemotherapy get the same thing because they also have low WBC.  I am no longer anemic (as a matter of fact my HGB is above the lab low normal--I dealt with very bad anemia in the past on TKIs).  Today, I tend to be a little neutropenic, but hover around 1.0.  However, that number could be considered normal depending on who you ask (I am pretty sure I was around 1.0 before this whole CML mess).  

Thanks again and take care!

Tedsey

[soundoff]

Hi Dawnhan,

I use good old fashion water and salt.

Works magicly after 1 day.  ; - )

Use about half a cup of luke warm water and at least 2 tablespoons of table salt.

Rinse with out swallowing it of course and swish for at least 1 minute.

Don't rinse it out after leave the salty taste in your mouth.

Soundoff

[0vercast]

I know it's not of much help to you, but for years I've suffered from occasional mouth sores during times of great stress.

The 1/8-1/4" painful white ulcers occur usually on the sides of my tongue, and they take about a week+ to go away. No treatments have been effective (saltwater or peroxide rinses, etc). By the way, they began to occur long before I started taking a TKI, and they reoccur only in times of great stress. For instances, I have one now; the first in many months, and just a few days from now, I have multiple college exams, a bone marrow biopsy, and soon after that, I will be switching TKIs because my numbers have begun to inch back up, and that worries me.

[dawnhan]

I had mouth ulcers before CML.  However, after I started on Gleevec, my mouth would swell to the point where I felt my entire mouth was ulcerous.  The mixture you mentioned is magic mouthwash.  It saved me during my most painful time. 

Again, after I switched to Sprycel, I noticed that my ulcers and mouth problems did not go away.  That was why I continued to try different supplements and found this combination that has worked for me.

[dawnhan]

I think I am one of those on whom salt and water combination doesn't work.  It actually gives me more pain before my "normal" pain returns.

[Trey]

I have always simply placed a calcium based antacid tablet (Tums or equivalent) directly on the mouth sore and leave it there to dissolve or at least as long as possible.  I do this at the first sign of the sore.  The swishing in the mouth of antacid solutions never worked quite as well as that for me, although some believe that procedure helps. 

[Tedsey]

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,

Tedsey

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?