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Pain Relief #198662
07-09-2019 09:58 AM
07-09-2019 09:58 AM
Joined: Jun 2019
Posts: 53
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Dizz_zzey Online OP
"OCF across the pond"
Dizz_zzey  Online OP
"OCF across the pond"
Supporting Member (50+ posts)
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Joined: Jun 2019
Posts: 53
Hey everyone, just wondering can anyone give me some guidance for pain relief in my tongue. I've got the benzydamine spray to ease the pain so that I can eat, but either I'm getting used to it or the pain is increasing and I'm finding I need to use more of it throughout the day and at night.

Is there anything you can recommend that would last longer or I can use with the spray?

I'm on co-codamol 30/500 2 tablets 4x a day, ibuprofen 400mg 4x a day and oramorph as and when (I'm not a fan of being bunged up so don't take the oramorph as often as I could)

My pain is a sharp stabbing pain where my tongue rubs on my teeth, an ache in theback of my tongue (as I'm doing exercises) and a feeling as if I've burnt my tongue on the left.

In the UK we don't have magic mouthwash as far as I know.


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses Rads due 17th September '19
3 doses cispltin due 16th Sept '19
Re: Pain Relief [Re: Dizz_zzey] #198673
07-09-2019 06:03 PM
07-09-2019 06:03 PM
Joined: Jun 2007
Posts: 10,364
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,364
PA
Im not familiar with the things you mentioned. Different countries have different things available, possibly named something else. Ask your doc about gabapentin AKA neurontin. That works great on nerve pain, at least it did for me and may help you as well. I know it comes in liquid form which can be easier to swallow or could be put thru a feeding tube.

Magic mouthwash would help but it is only a temporary relief. Theres many different ways it can be made. I used a combo of lidocaine, malox and benedryl.

Hope this helps you. Nobody should have to suffer in pain!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: Pain Relief [Re: ChristineB] #198680
07-10-2019 10:24 AM
07-10-2019 10:24 AM
Joined: Jun 2019
Posts: 53
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Dizz_zzey Online OP
"OCF across the pond"
Dizz_zzey  Online OP
"OCF across the pond"
Supporting Member (50+ posts)
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Joined: Jun 2019
Posts: 53
Hi Christine,

I forget different countries have different names for things. No worries. Thanks for the assistance. I spoke to a Pharmacist who's given me a new direction but she's also recommended I give my nurse a call in the morning, which I will do.

Yeah te pain has been gradually increasing and it's affecting my eating so much I've lost 5kg in 5 days.

Hope you're doing OK.


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses Rads due 17th September '19
3 doses cispltin due 16th Sept '19
Re: Pain Relief [Re: Dizz_zzey] #198687
07-11-2019 10:18 AM
07-11-2019 10:18 AM
Joined: Jun 2007
Posts: 10,364
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,364
PA
Watch your weight loss very closely!!!! Thats a red flag that tells you its important to focus more on your intake. Doctors in the US tell patients zero weight loss is preferred no matter what the weight of their patient is going into it. Weight fluctuations can bring out many other issues so please try your very best to make every swallow count. I used to love ice cold yoo-hoo (chocolate drink containing some vitamins and minerals sold in most grocery stores in the US) as well as chocolate milk (400 calories a pint) which are both great choices to help with your daily intake. I also made a gigantic chocolate peanut butter milkshake that contained between 1200 -1800+ calories per shake. I loaded it with full fat ice cream, peanut butter, high protein whey powder, chocolate syrup, whole milk, etc... Some days Id drink 2 or 3 of them, unfortunately my weight loss was already so far out of control it was too late to turn it around by the time I started making the shakes.

Theres also the fentanyl patch many here have used. Thats a HUGE help, at least it was for me. If you ask about it, Ive heard it referred to as duragesic (SP?). It comes in doses from 7.5 mcg, 25mcg, 50 mcg, 75 mcg, 100 mcg and last for 3 days. Its a good medication to hopefully stabilize your pain from coming and going thru-out the day and night but you probably will still need the occasional dose of another pain medication for sporadic break thru pain. Just be sure to read and follow the directions exactly!!! The patch is very sensitive and if compromised it could release all the medicine too quickly causing an over-dose. As long as the patients is aware they must not take long, hot baths or showers, or cut, rip, tear, fold, bend or in any way compromise the patch itself then you will be fine with it. The fentanyl patch is the strongest pain medication available in the US. Its a step up and step down medication with gradual changes for increasing or decreasing the dosage. It sure cant hurt to give it a try. Something must be done to manage your pain so you are able to take in enough. If not unfortunately a feeding tube will be necessary to ensure you will be able to sustain yourself during treatments and recovery. Id guess your doc would start you at 50mcg's then move you up to 75mcgs, thats still not very high of a dose. Some patients end up using 200 mcgs for a week or 2 of their worst pain. I went up to 150 mcgs for a short time then backed all the way down to 7.5mcgs. I thought Id be ok without using the patch at all but quickly found out it was doing what it was supposed to do in controlling my pain. I hadnt realized how much pain I really would have endured when using the patch so I went right back on it and settled for a couple months of 25mcgs til I was weaned off it again. It takes about 24 hours before the patient notices if its working to control their pain levels. Even if you use the fentanyl patch, neurontin you still should get some magic mouthwash to use before you try to eat. That combo should work pretty well for you to be ok long enough to get whatever you are trying to eat down without suffering in agony. Mouth pain can be the WORST pain ever!!!

Another thing you may find helps when you try to brush your teeth with your mouth hurting so much is a water pik. Of course check if its ok with your doc first. Use it at least 2x a day on its lowest setting with warm water and a tablespoon of non-alcohol mouthwash to get between your teeth better than any flossing could do. Id also recommend rising your mouth at least 4x a day with a mixture of 1 cup of warm water, 1 tsp salt and 1 tsp baking soda. Swish it around for at least a minute and spit it out, repeat the process. This helps maintain the ph balance in your mouth which should help keep it nice clean helping it to heal. Magic mouthwash can be done to numb your mouth about 15 minutes before using the water pik and salt/baking soda rinse so you wont be in so much pain doing the water pik and rinsing. For the salt/baking soda mouth rinse, the salt can burn your mouth and hurt like heck. Its ok to cut the salt down to half a teaspoon or even a quarter tsp. Only if its impossible for you to do the rinse omit the salt entirely. By omitting it, the rinse is less effective so do your best to struggle thru keeping some salt in the concoction.

Some patients will blindly follow their doctors instructions ignoring any further detail of their illness or treatments., they just do not want to know anything. By reading info here and on the main OCF site, you are becoming a very strong advocate for yourself. When asking doctors for different things many doctors will show some surprise their patient has become so knowledgeable. This is a very good thing!!! Being your own advocate isnt easy, especially when you arent feeling well. Im sure you are doing your very best to do everything in your power to get thru is as easily as possible. Hang in there, you have friends from around the world in your corner rooting you on.

Hope this additional info helps!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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