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#48754 09-10-2007 03:54 AM
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I'm currently undergoing chemo treatment for a recurrence/mets. I had Cisplatin, Docetaxel, and 5-FU two weeks ago today (the 5-FU was a 96 hour pump). After having radiation last year, I am finding horrible mouth sore problems. I've been sensitive orally ever since radiation of course. I guess last year I didn't even realize how much the chemo can cause mouth sores, because I was getting it concurrent with radiation - I just assumed all the carnage was from the radiation.

Anybody have any good luck with anything to help numb the pain? My lips are blistered and bloody and if I could open my mouth wide enough to see I assume it looks the same inside. They gave some sort of pinkish/white benadryl solution to rinse. It works to numb it for about 10 minutes but that's it. Any better suggestions would be appreciated. I won't be starting radiation again until after one more 3 week cycle of chemo - which will begin next Monday.

thanks
Steve


Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
#48755 09-10-2007 04:40 AM
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Mouth sores and bleeding are a nightmare steve and everyone will probably have a different piece of advice.Mine would be to keep everything moist, as bleeding will be exacerbated by things drying out and Rob used biotene gel,soda water and salt rinses helped but can be quite painful,nystatin washes keep the pain of thrush at bay,but ultimately until the treatment stops its gonna be very hard.Rob also got some relief from difflam but again it hurts a bit.Try some vaseline on your lips and bonjela is good for numbing things.

good luck

liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
#48756 09-10-2007 06:22 AM
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Hi
Gel Clair and difflam helped me
Hope all goes well
Dave and Sue

#48757 09-10-2007 08:35 AM
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I find the 'little man with knives twisting' can be dulled brilliantly for quite a while with Oragel Max, which I bought in the States--my daughter ships it out to me regularly!
Brenda


Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
#48758 09-10-2007 03:13 PM
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Steve, something else you might try is "Insisting Very Loudly" that either the Chemo Doc or the Nurses give you more thigs to try to help alleviate you pain and sores. Keep insisting that you need something better. Also, we used Aquaphor [an OTC product] for John's dry lips and it helped. John also found Rincinol P.R.N. helpful at times and Lidocaine 2% viscous solution[ by script]. You really need to get some relief before your radiation starts. Amy in the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#48759 09-10-2007 03:31 PM
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Steve,

Mouth sores are one of the most unwelcome side effects of chemo and radiation. These treatments target rapidly growing cells. The lining of the mouth and oral cavity is and area where cells rapidly replace the existing ones. There are multiple entities that can cause the sore ness and ulcers that can occur together or individually. A few that come to mind are: apthous ulcers, thrush, inflammatory hyperplasia, mucositis (more common with radiation than chemo), traumatic ulcers, and immunodeficiency (cuased by the chemo and on occasion not).
There is no "magic wand" and every patient is different and will have a different solution be their best friend to help reduce or control mouth sores.

Some things you can do, and you may already know these are,
Drink lots of water.
Avoid caffeine, alcohol in all forms and tobacco.
Avoid acidic, course (chips etc.) and spicy foods.
Be extremely diligent in your oral hygiene routine.
See your dentist, a rough tooth or filling that rubs your lips or cheek can remove or weaken the mucous membrane and actually cause and/or make the ulcers worse.
Your dentist can also recommend rinses or other medications that can help reduce the discomfot and pain.

I have in the past fabricated smooth, almost mouthguard like trays, for pateints to wear just to keep their teeth from contacting their cheeks and lips due to the fragile situation with the lining of their mouths.

Biotene, and Closys have products that can help.

I hope this is of some use to you.

E-mail me anytime.

My prayers and thought are with you.

Mike


Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
#48760 09-10-2007 03:57 PM
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Dan has been helped a lot by Med Oral flouride rinse, available (although not everywhere) without a prescription.


Stage IV BOT, 5x3cm. --Diag. 4/18/07-- May-June,07 M.D.Anderson CCC, Induction chemo-Cisplatin, 5-FU, Taxotere x3, complete clinical and scan response -- IMRT x33 weekly carboplatin, to be completed 9/7/07
#48761 09-10-2007 04:10 PM
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Steve,
there are some good suggestions here. When things were bad for me I used viscous liocaine. I diluted this 1:2 and swished it around and also swallowed some (helped swallowing/eating). Unfortunatly the relief is only short term. I also used Aquaphor for lips.

Not to hijack this tread.... about on month after the end of the radiation I ended up getting blisters (top of mouth, soft palate) and on the inside of lip. The blisters (up to 7-10) appered when eating and had trapped fluid. (ca 1-3mm in diameter). They do/did not hurt and vanish within an hour or so... and reappear at different positions next time. Now I get only a few and rarely but always when eating. Presumably small glands are getting busy again?
Has anyone else encountered this?

Markus


Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
#48762 09-10-2007 04:16 PM
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Markus,

You are correct, small minor salivary and mucous glands are producing their products. The overlying skin (mucous membrane etc.) grows much faster and can grow over the tiny openings of these and result in tiny blisters as the saliva products are produced. This should become less prevalent as healing continues.

Any blisters that result in pain or ulceration that do not heal within 2 weeks should be mentioned to your doctors.

Cheers,

Mike


Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
#48763 09-11-2007 02:30 PM
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Hi Steve,

The 5 FU is the culprit. I don't want to be negative, but my pain lasted for 4 months. I had to use a peg tube to eat for that lenght of time. Magic Mouth wash did not touvh. They gave me morphine, fyntenal, and oxycotin and they barley touched the pain.

All of the above answeres are good thing to try, but it may be someting you have to live with for a while.

Steve Daib


SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
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