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#148515 - 04/19/12 07:51 PM pain meds  
Joined: Nov 2010
Posts: 74
plantgirl Offline
Supporting Member (50+ posts)
plantgirl  Offline
Supporting Member (50+ posts)

Joined: Nov 2010
Posts: 74
North Carolina
Ive been on and off pain meds for 2 years and do not have any dependancy issues. They have no euphoric effect on me from oxycontin to Percocets. They do however help with the pain I still have. Last week my ENT changed me over to Ibuprofin and they are not working at all. I cant sleep at night and I'm miserable. My question is should I insist on being back on the prescription pain killers or should I just adjust?

Last edited by plantgirl; 04/19/12 09:24 PM.

4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
#148521 - 04/19/12 08:58 PM Re: pain meds [Re: plantgirl]  
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Posts: 9,650
ChristineB Offline
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ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,650
PA
Thats a tough question. I hate taking meds but I do. Over the counter meds are just not strong enough for me. I understand your doctors concerns about giving you the strong stuff but he needs to understand that oral cancer has so many after effects that many patients need to have some prescription meds to manage the bad days. If I were you, I would give it a try for say 2 or 3 weeks, but if you find you are taking larger quantities than what is recommended then tell the doc. Some patients go to pain management clinics to help them learn to deal with lingering pain. Dont make yourself suffer when you dont have to. Nobody should be in pain, its not helpful at all.


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
#148524 - 04/19/12 09:41 PM Re: pain meds [Re: ChristineB]  
Joined: Nov 2010
Posts: 74
plantgirl Offline
Supporting Member (50+ posts)
plantgirl  Offline
Supporting Member (50+ posts)

Joined: Nov 2010
Posts: 74
North Carolina
Thanks Christine. I guess I should give it a little more time. I'm just sick of being in pain. We OC patients just have way too much pain.


4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
#148525 - 04/19/12 10:28 PM Re: pain meds [Re: plantgirl]  
Joined: Jul 2011
Posts: 945
Maria Offline
"Above & Beyond" Member (500+ posts)
Maria  Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2011
Posts: 945
Ohio
There are a whole host of non-narcotic NSAIDs (ibuprophen is just one) that may work better for you. I am on Lodine for my RA and it is a godsend. You might ask your doctor about switching NSAIDs if you aren't getting some relief by this coming Monday. According to my neurologist friend, and my rheumologist, it is pretty much a crapshoot as to which will work best for a particular individual. For example, Meloxicam didn't help my pain and made my insomnia worse!

ENT's are not pain management specialists. Christine's suggestion of a pain clinic is a good one - you could also get a referral to a neurologist - they are the experts.

Sleeping is an issue in itself. You're probably limiting your caffiene intake to the morning hours - I only ask because I wasn't bright enough to do so myself.


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
#148630 - 04/22/12 05:41 PM Re: pain meds [Re: Maria]  
Joined: Nov 2010
Posts: 74
plantgirl Offline
Supporting Member (50+ posts)
plantgirl  Offline
Supporting Member (50+ posts)

Joined: Nov 2010
Posts: 74
North Carolina
Going to try to see Pain mgt team tomorrow. Pain is just getting to frustrating for me to handle. I haven't slept in 2 days even with Ambiem. Seems to be especially bad at night.


4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
#148641 - 04/22/12 09:44 PM Re: pain meds [Re: plantgirl]  
Joined: Jun 2007
Posts: 9,650
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,650
PA
I always hurt worse at night too. Seems like my kids would always get the sickest in the evenings too. Not sleeping is something many of us have in common. I havent been able to sleep all night for years. Good luck tomorrow!


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
#148691 - 04/23/12 09:28 PM Re: pain meds [Re: ChristineB]  
Joined: Jun 2007
Posts: 5,260
EzJim Offline
Patient Advocate (old timer, 2000 posts)
EzJim  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Mingo Jct., Ohio
Tell the Dr you are not getting relief from the Ibuprophin and need some thing that works. I been on percocet and methodone for a few years now and like you, I'm not hooked but they help a little. The Drs are getting me a new pain management team o that maybe something will work. I have pain 24-7 and understand your problem. My tongue remains are my big problem. Nothing stops that crazy pain.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
#148696 - 04/23/12 10:33 PM Re: pain meds [Re: EzJim]  
Joined: Nov 2010
Posts: 74
plantgirl Offline
Supporting Member (50+ posts)
plantgirl  Offline
Supporting Member (50+ posts)

Joined: Nov 2010
Posts: 74
North Carolina
Will be meeting with pain mgt later this week.Wish it was sooner..kept me awake again last night.


4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
#148707 - 04/24/12 03:40 PM Re: pain meds [Re: plantgirl]  
Joined: Jul 2009
Posts: 1,369
David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,369
Los Angeles
Best of luck, PG. I know whereof you speak, and if the pain is constant it's impossible to ignore it, let alone sleep! Let us know what you find out. I hope you get some relief soon.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 8 years all clear in 6/17

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