i HOPE SOMEONE CAN OFFER HELP: MOM HAD OC TONGUE SURGERY 1 YR AGO; AND A RECONSTRUCTION 1/09;CONSTANT BURNING TONGUE PAINS; SHE CAN'T COPE ANYMORE; PAIN MEDS ARE BEYOND NORMAL.SHE'S ONLY EATING ENSURE; EVERYTHING ELSE "BURNS"; SHE, AND WE, ARE AT END OF ROPE; ANY SUGGESTIONS APPRECIATED.

It sounds like she may have thrush. Has she seen the ENT?

gary, thank you for your answer. been down that route and this is way way more than thrush. we're talking burning sensation which makes eating and living almost impossible.

I had my tongue surgery on 8-3 07,, then had rads and chemo after I had my teeth taken out and the rad seed implants on 2-29-08. My tongue still burns as much as it ever did . Your mom might benefit from some magic mouth wash and some biotene mouth wash and brusing her tongue with biotene toothpaste. This I have to do 2 to 3 times a day. The Magic Mouthwash works very good. This is no pain free surgery we all had. It is going to hurt for however long.Good luck.

I guess I should have said that I had a few biopsies done and 2 nasty infections before I ever had the surgery.

Do you know what exact pain protocol she is on? My senior dad thought that Tylenol was an adequate pain killer when he was dying from cancer (even though he had Dilaudid and other strong pain meds available).

I mention the thrush because I am over 6 years post Tx and if there is a pH imbalance I can still get it.

Did she have radiation?

She may have nerve damage from the surgery which is causing "phantom" pain. Maybe a consult with a neurologist would help.

She could also be experiencing pain from nerve regeneration from the surgery but she really needs to have her doctors to get involved.

my mom is now on 100mg pain patch(fentynol?)and 20mg oxycoton; that follows percosets, dilaudid,and a host of other stuff. we tried the magic mouthwash and biotene, both too strong so we diluted with maalax; that ended in a 911 call to hospital.
i think it's something neurologic - but so far no specialist confirms.
thanks for you help. i tried calling sloan kettering for help today, but becuz she's "cancer free" they will not assist. my next call is to dana farber institute.

hi gary,
i believe you are right. which docs? surgeons not very helpful, pain managers just try new cocktails that they hope will help. i think she needs new neurologist.
thanks so very much. we are desparate and i fear she will overdose herself on all the pain meds a la m.j.

i replied to david and said "gary", to both, i very much appreciate your thoughts.

I would be surprised if she has prescriptions for all of those meds to take at the same time from the same doctor. That would be "out of the box" from the NCCN Adult Cancer Pain Management Guidelines from the Oncology Practices Guidance document. Pain meds should be coordinated by one doctor. The guidelines typically only list a combination of 2 drugs - one for "long term" (like Fentanyl) and one for "short term" (or "breakthrough" pain - like Morphine). Magic mouthwash being an exception to the 2 drug rule.

Many institutions have pain management specialists. I would start be trying to get a referal to them. My second choice would be the MO since they specialize in body dhemistry. Even her PCP should be able to help. RO and ENT's are typically the most reluctanct to prescribe adequate pain meds.

Remember that Fentanyl takes 24 hours for changes in the therapeutic dose to be noticed so a little patience is required. 100 mcg is not a large dose, by the way, they can prescribe up to 500 mcg, but that is rare for H&N cancer patients. Fentanyl is typically increased in 25 mcg increments. I had 175 mcg at my worst point and others here have had as high as 250 mcg. Read and follow the directions for use with the patch explicitly.

When using the magic mouthwash - do not swallow it - it is a "swish and spit" medication. Swallowing it may numb the gag reflex and result in aspiration into the lungs, which could result in pnuemonia.

Gary, I am told and the instructions are on the bottle to take 2 teaspoons before meals and at bedtime. swish around the mouth gargle then swallow. I have the bottle sitting on my desk here.

It has been two months since my surgery and I still have a burning sensation in my tongue. It gets worse if I eat anything, and will start to go numb, and then the burning sensation comes back.