I don't now if I'm replying in the right place but found you mentioned burning tongue. My first attempt at chemo was Erbitux which almost killed me. Had a horrible alergic reation that sent me from the cancer clinic by ambulance where my heart stopped to the hospital Memorial weekend 2011. After daily radiation during June - July 20 & Carboplatin weekly I am still stuggling with burning tongue. Shortly after treatment I was diagnosed with Thrush. After treatment (about 1 month) I was eating small amounts of some normal food, even pizza! Then my mouth started burning so bad, I ended up only being able to eat partially frozen malts made with strawberry Ensure Plus base & lots of ice cream. This has been going on for about 2 months. Chemo, radiation & surgeon doctors all say this is normal & keep uping my pain mediation which doesn't seem to be working. I am currently on 400 mg Fentanyl, 3600mg daily Gabapentin which they say is for nerve pain in my tongue. I use Lidocaine & magic mouthwash & none of it realy seams to help. After my wife called over the weekend & talked to the medical oncologist on call (not my normal one), she said she thought I had a fungal infection which is causing the burning & that I shouldn't be getting worse at this stage instead of getting better. Anybody have any experiance like this?

Scott, I have moved your post to its own thread. If you need help with how to make posts, please ask and I can guide you thru.


You are taking a very high amount of pain meds for someone who is a few months post treatment. I would suggest to make an appointment to see your ENT or medical oncologist to get your mouth checked out. Many of us have had thrush post radiation. Thrush can be very painful. You will need meds to kick it if it is thrush. Get checked out and on the right meds to help so you can feel better.

Anytime I have a burning tongue it's usually a sign of thrush or as I call it Split Tongue Disease! Have that checked out because without the proper meds it won't go away.

RE the 400 Fent, man that is a TON of pain meds especially for where you are treatment wise. Someone really needs to start weening you off of that and NOW.

I had thrush at the end of week three of my seven. I took the meds and it went away. The thrush came back three times by the time I started eating which was three weeks after I was done treatment. I was told once you get it, it is likely to come back.

It hasn't returned since I started eating.

You set the record here for Fentanyl dose rate- is Michael Jackson's doc your pain management specialist? The highest dose rate I am aware of here on the forum has been around 175-200 mcg. 500 mcg is the maximum dose that a human being can get and it is typically reserved for pancreatic cancer patients which is excruciatingly painful in the terminal phase.

With that dose rate it is imperative that you have a very specifically tailored phase out or you could have convulsions and/or death.

Thrush is extremely common when the pH factor is knocked out of balance because of treatment. I am 8 years out and had thrush last year (and I have normal salivary function). All of us have candidiasis (yeast) present in our mouths and the slightest pH balance change will cause them to bloom. I was on maintenance doses of Diflucan for months post Tx.

Radiation and chemo beat the tongue up pretty good as well and mouth and tongue sores take a long time to heal.

I just got back from the ER to see if they could get me back to my normal pain & test for Trush. It came back negative, blood tests were normal. All they did was give me some fluids. Obviously I should be backed off from the 400mg Fentanyl but the nurse said it should be 300mg last week & changed the record on my chart. Since I have been at the 400mg for the better share of a month, they shouldn't go down with the dose that fast, should they? They refilled the perscription today for 6 100mn patches stating 300mg per use. I am due to change tomorrow. I am nervous now about going down 100mg in one dose....

I would be too contact your dr. Before making that big a change! Good luck!

That seems pretty extreme for that high a dose. I had less than 1/2 your dose rate and my phase out plan took over a month. Typically Fentanyl is ramped up in 25mcg dose rates. A phase out should be the reverse of that.

As Cheryl stated - do NOT do this on your own. It requires a medically crafted phase out plan.

I still had withdrawal symptoms - manageable, however, with only a few days of weirdness.

Fentanyl is 100X more powerful than Heroin and demands being treated with caution and respect.