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#121001 08-26-2010 11:30 PM
Joined: Aug 2010
Posts: 157
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Joined: Aug 2010
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The last 4 or 5 days my tongue has been killing me, getting up every 2 hours on the dot all through the night. Massive amounts of drool,yet a very dry sandpaper feeling across the wound. It is bleeding more as well as throbbing more, I am trying to get back into the doctor tomorrow for a quick look to see if it just may be infected from the last biopsy. Boy I hope that is all it is, Ive been in shambles thinking " Great, now what?". I am just ready for the day to get here and get this out of my mouth, I just do not understand why it has been bothering me more as of late. The lidocaine is only lasting about 45 mins tops, and anything I drink or eat irritates it sooooo much. To be perfectly honest, I am getting scared again and try not to tell my mother or fiance too much because I dont want to worry them as well. Tonight is the 5th straight night I cannot rest due to the constant throbbing and pain.

I dont kno if it is just mental,or something I ate, just part of the struggle I guess...Surgery coming up on the 16th,and cannot wait. The pain meds are not working so well nor the mouthwash, only lidocaine for a bit. Could it be the lidocaaine drying up and filming over the wound? Any experiences here?

Nathan


SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
Nate82 #121003 08-27-2010 05:02 AM
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Tell them you either need pain meds that work and there are PLENTY to choose from or they need to perform the surgery tomorrow!


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #121033 08-27-2010 07:55 PM
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Hey Nate. I would call the dr and tell them that having cancer and waiting for surgery is torture enough and you don't need this pain to please give you something else for now. My sister was in pain before surgery too. She had a hard time eating and was getting severe eye and head pain. They put her on percecet but that was to hard to swallow so they switched her to liquid Tylenol with codine. Hope you feel better soon.


CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads
1/10/2011 Clear PET!!!
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Nathan - you sure don't need this kind of pain! I agree wholeheartedly with David and Susan. You said you were getting in to see the doctor today so be sure and tell and show how much physical and emotional pain you are in. You really need to get some rest and with surgery not until the 16th, as David said, you need the pain meds now! I know you don't want to worry your fianc� or your Mom too much but the people that love you want to help and it makes them feel better to know that they are able to do something for you. Let us know what happens, ok?


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Joined: Aug 2010
Posts: 157
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Joined: Aug 2010
Posts: 157
Hey friends!

Well I had the fiancee call the doc for me friday and luckily they wanted to see me right away. So she took me down to ol' LBJ for another adventure and we actually got in very fast for a friday. They had a look at me and said it did not look infected but looked irritated possibly from me doing something in my sleep. So he prescribed me 3 different kinds of mouthwashes, and a stronger vicodin as well. Still not getting as much sleep as I would like but it is getting better, I am trying to meditate more and act as if I am somewhere else. The docs basically told me to hang in there, and since I am in a county system I am in line so the surgery is set in stone yet they all seem very confident about getting this bad boy outta' here. I will keep you all posted, officially took a LOA from work til this is over,just cannot take the heat anymore with no rest and pain. Thank you all!


SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
Nate82 #121114 08-30-2010 12:53 PM
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That's really great, Nathan! I'm glad things are getting a little better and it sounds like things are moving along. How nice that your fiancee is helping you with this, too. I really means a lot to have someone with you when you go for appointments.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Joined: Jul 2006
Posts: 388
Platinum Member (300+ posts)
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Nate, how are the mouthwashes and stronger vicodin working? You need your sleep, so hopefully, those are helping!


Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
Joined: Aug 2010
Posts: 157
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Posts: 157
The mouthwashes are doing ok, but not anything to write home about ya know? Um...I went in to oncology last wednsday and two other doctors/surgeons from MD Anderson looked at me and said "hang in there!" and I told them I still was only sleeping a few hours of sleep and it still throbbed and got extremely dry and stiff.

They prescribed me morphine and that has done nothing but make me even more irritable, extremely constipated and even difficult to urinate. Still wake up through the night, surgery just days away and I am literally just trying to tough this one out and not try and take it out on Korinne so much.

But the medecine makes me jumpy and all junkie feeling and I still hurt. I can only get the lidocaine to numb it long enough to sleep for about 45 mins, Im just in bed longer to make up for it. Having alot of verbal warfare with close friends and Korinne an am just tired of it. I will say one thing crazy is that days have just flown by, I did not realize how long it was since my last post. Thanks All!! Much Love...

Nathan


SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
Nate82 #121365 09-05-2010 08:06 PM
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Administrator, Director of Patient Support Services
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Try asking your docs for the fentanyl patch. It will help with the pain and you only have to change it every 72 hours. Just be careful with it, the medicine is the strongest pain meds you can get. Do not tear or fold it and no hot showers, both of those could cause some extreeme side effects or an overdose. Dont mean to scare you about the patch, I loved it and had no problems with it at all. It worked for me and many others here.

Sorry to hear you are grumpy. Its not easy getting thru this but you can do it. The lack of sleep is making things worse. Did you ask for sleeping pills? I had to take those while I had chemo/radiation treatments.

I love the signature....We will Prevail!!!! smile


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
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
I second Christine's fentanyl patch recommendation. Blame it on my hippie youth, but I disregarded the scary guidelines. I had zero problems with it even though I did take hot showers and I changed my patch every 48 hours because it never lasted three days for me. Plus I took alcohol. I told my doctors about my disdain for the protocol and their response was that those guidelines are intended as general ones and like everything in Cancer TX, individual responses vary. Not suggesting or recommending that you do the same, just wanted to give a different slant on how convenient and wonderful the patch turned out for me.
The only rule that I broke that had consequences was when I foolishly quit cold turkey - that was a mistake and I had to start up the patches and gradually wean myself off.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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