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Joined: Sep 2011
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"OCF Canuck"
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"OCF Canuck"
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My only Rx following sx were Tylenol#3(codeine/caff) 1-2 tab q 4hrs and chlorohexidine washes BID.

My pain was almost non-existant in the hospital and therefore speech was ok, despite obvious tongue and throat swelling, 4 days post op my pain was manages at the 2-5/10 range, however the T3 have caused serious jitters, nausea, decreased appetite, lightheadness, palor and diaphoresis and dry heaves.

So I went off them and just took plain X strength Tylenol, I was taking 1 tablet q 4hrs with 12.5mg Gravol and the pain 24 hrs later shot up to 12/10!!! So I started back on them at 1/2 a tablet with 12.5mg Gravol q 4hr, dizziness with mobility, diaphoresis and slight tremour re-appearing. Pain scale 5-7/10. Now pain is increasing to 9/10 range so I have upped the dose to a full tablet again with 12.5mg PO of Gravol to offset the nausea and dizziness.

Worried about sleeplessness and constipation will obviously persist. Despite being a nurse and being able to offer sound advice to patients....suddenly when you're the patient...swiss cheese for a brain happens. I apparently become as stupid as a rock! :P

Should I carry on the course and see about finding that balance between pain and mobility function with the T3 and Gravol stupor....continue to add to the dose without compromising nutrition and restlessness and anxiety??

Any suggestions or words of wisdom? I have never taken T3 for more than 1 or 2 doses before, so this is new for me. I am small statured and have a cardiac condition and an anxiety disorder so the jitters are NOT welcome. I dont consume caffeine at all.

The pain is compromising my healing as I find myself in more pain when I attempt to speak and when I eat. Totally exhausted following any attempt to do either. But worried the Gravol may inhibit both as well....ugh!! I am consuming on average 500calories a day...and yes have lost almost a pound a day.

I live alone and need to be functional to prepare my 'meals' go shopping and such!!

Any idea how long the swelling and numbness/pain to the tongue last? I cant seem to find any answers/averages to the length of healing on this site or by asking my physicians team, they all seem to dodge the question, nor does the internet offer any suggestions.

How long did YOURS last? Even if your sx was more complex than mine it may give me a guideline of expectation to work towards.

Thanks Tracy




Tracy Dx @ age 47
Single No dependants
NS/Social ETOH
Clinical Study (early detection)
Dx July/09 Mod. Dysplasia (lichen planus)
Dx Sept/11 TisN0M0 SSC Lt Tongue
Sx Oct/11 CO2 Laser Glossectomy
Sx Mar/12 Release of tongue anchoring (Skin graft)
Lingual Nerve Damage


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Posts: 267
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Joined: Apr 2011
Posts: 267
I'm not sure how similar our treatments were. My surgery did not use a laser and they removed about 1/6 of my tongue. The intense pain only lasted for about a week and the swelling lasted around a month. Is it possible for your doctors to give you something else for your pain? Maybe a different medicine would have fewer negative side effects for you. I'm sorry you're having such a hard time. I hope it improves for you soon.


Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
Joined: Jan 2009
Posts: 1,844
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Joined: Jan 2009
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It really doesn't matter what treatment you've gone through, pain has to be managed as it's the enemy of healing. Pain will put your body in distress disrupting and slowing the healing process.

Now I understand that you are Canadian and they may do things different up there however if you are in a 9/10 range (roughly gauged as childbirth) then that's beyond an issue. I've always been told that pain is to be managed to a 4/10, that's low moderate pain so it's way past time to stop messing with the lightweight pain meds and dramamine and start hitting the juice ie hydrocodone and above.

Normally your dr will start you out with a 5/500 hydro however they have 7.5/500 and 10/650 (mg hydro/mg tylenol) and if those aren't cutting it then move up the scale to oxy. I'm a firm believer of more than adequate pain management so go with the big gun and jump to oxycodone, I'm sure it won't be an issue as you've got an opiate tolerance started due to the codeine. Whichever road you take, take it soon, you shouldn't have to be in pain.

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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"OCF Canuck"
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"OCF Canuck"
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Hey! I would say skip the t3s -If they're causing you issues. and you really can't afford to lose weight if you're -already petite. You should actually be trying to bulk up a bit! I'm really
bad with the pain meds Knowledge I find that anything with kick really knocks me flat in fact hey gave me oxy 5ml (tiny pill) and it would just make me sleepy! Codeine and hydromorph too. I'm a pain med wuss. Which is fine as I basically slept rough most of the unmanageable pain. That said, Eric is right, go to them and tell them it's not helping and your quality of life is seriously affected. My problem with meds is often you'll take a med to get rid of the pain, then another med to get rid of the symptoms (ie nausea , constipation etc..) and this just throws your whole body out of whack! But still you can't sit and suffer either.... I have a couple suggestions I'm going to pm you! Hugs and go back to emerge and explain what's going on, hopefully they'll find something hat works for you!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Sep 2011
Posts: 35
"OCF Canuck"
Contributing Member (25+ posts)
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"OCF Canuck"
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Joined: Sep 2011
Posts: 35
Thanks Everyone

Right now I suspect, out of fear of 'being out of it' (and non functional) that I have been undermedicating. My pain seems to escalate at night and seems rather neuralgic, that particular pain seems to be coming from the canker/ulcer on my lip. I simply cannot fall asleep before 0300am.

So I have upped the dose to 1.5 tab of the T3 and 25mg Gravol. Lightheadness and dizziness is there but passes when I lie down. Might have overdone it having a shower. Pain at about a 5/10. Progress!

Love your words of wisdom...

@MsMac...Maybe, I would have been better prepared if someone had told me to expect severe pain for at least a week before it subsides, then I would have been better prepared and medicated accordingly, even think... lets just get drugged up! Then taper off....and deal with all the paperwork/emails/appts afterwards. (ah hindsight 20/20)

@EricS. Again my fear of being knocked off my feet and seriously nauseated when I live alone, keeps me from upping it to any kind of hydromorph or oxy. With my low BP, I would be uncomfortable taking that chance! Your absolutely right pain is an individual thing. A 8/10 is different for one person than another based on previous experiences. And as a nurse, I always wanted my patients to maintain a 4/10 scale or less.

@Cheryl. Thanks for the PMs. I suspect if I didnt live alone I would have happily loaded up and knocked my self into sleepy-land and let somebody else deal with my stupor.

If the neuralgic pain comes back I promise I will go to ER-promise!!

The canker sore on my lip has opened into a raw sore now, no purulence, it was caused by the retractors used during the surgery as it was there when I woke from surgery, maybe now it will start to heal over. smile

PS Cheryl I just got my care package from my gf!! Holy Happy Thanksgiving Batman!! I have a liquid chow down festival waiting for me....Yummy organic soups and Boost!! laugh

Thanks!








Tracy Dx @ age 47
Single No dependants
NS/Social ETOH
Clinical Study (early detection)
Dx July/09 Mod. Dysplasia (lichen planus)
Dx Sept/11 TisN0M0 SSC Lt Tongue
Sx Oct/11 CO2 Laser Glossectomy
Sx Mar/12 Release of tongue anchoring (Skin graft)
Lingual Nerve Damage



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