#92803 03-30-2009 03:10 AM | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | I consider myself fairly tough and I try not to be a whiney, pain in the patoot, but I don't think I should be having this much pain. I don't think that I should be up a couple of times every night because I hurt. Since starting PT for my neck swelling I am now waking up at 4 or 5 as opposed to 3 or 4. This is the beginning of my 4th week, is this the progress that I can expect?
My right jaw hurts and I have a burning (for lack of better description) on the right side of my mouth that is either my flap or my gums. It's hard to tell. All attempts with food have ceased now, I'm either just too worn out to try to make anything or I hurt too bad to do it. The toughest little girl in the world is sitting here crying this morning because I hurt. I just put some Jevity, Xanax and Hydrochodone in the PEG and I will lay on the couch until the doc's office opens at 9. I wish I hadn't got so cocky and thrown out the stronger meds once I was feeling better. I won't do that again.
I'm glad that I had someone to talk to here for a couple of minutes and I surely don't want to be a whiner. I'll call the doc as soon as they open and I'll ask her "How much pain is normal?" This much just can't be normal.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Patty
You are doing the right thing by taking what you have and calling the doctor. Hope you feel better very soon!!! ChristineSCC 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 | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Geez Patty, I guess that is why I saved that patch instead of trashing it. My Dr gave me hell , when I went to the Hospital to get the Script for the pills Friday. I was told that " We told you before we don't want you to suffer but call us if you are hurting." He sure is right. He and his staff had all told me that. Noone needs to suffer. I wouls share patty but you are just a little far away . I hope you get those meds soon and can get some needed shut eye.
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
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | That wasn't pills, that was for patches , sorry
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
| | | | Joined: Aug 2008 Posts: 113 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2008 Posts: 113 | Patty. Take whatever you need to make yourself comfortable. The dr gave Jim a lot of meds and he was not real consistent in taking them. She said for him not to be afraid to take whatever has been prescribed. She made it very clear--if you are in pain, then get those meds in your body for relief. We started the patches at "25", now he is up to "125" and the oxycodone helps. Good luck and sorry to see you going through so much. Keep us posted...............Claudia
Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Patty different people have different pain thresholds.Some like Ezjim have a very high pain tolerance some have a very low one ,and most of us are in between.The golden rule is your OWN pain level on a scale of 1 -10.Robins doctors said he should take medication as soon as he got to a 2,if he got to a 5 he should take stronger medication,and if it got to 8-10 he should take the damn lot. The Doctors explained that different pain requires different medication.Robs ranged from soluble paracetamol,voltarol for neuraligc and muscular pain,fentanyl for the radiation burns ,and breakthrough liquid morphine if all else failed.He also had a mucaine mouth wash.
please patty do not try to run before you can walk,take as much medication as you need for as long as you need.
love 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.
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | I kept all my painkillers - I have the entire morphine family, plus patches. I have a low pain threshhold but I don't think that because of that that I should consider myself a whiner! We are all different. Good thing - or life would be just too boring!
Follow the pain Patty. Get down to the bottom of what is causing it. Pain is your body's way of telling you something isn't right. Keep after the root cause.
Sure hope you are feeling better soon. Be clear with your doctor - no brave face. He/she needs to know.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | I got an appointment at 2 PM. They have never seen me cry before and don't know what to think. Now that I started crying I hac=ve to figure out how yo stop so I can get myself together to get there. It feels like someone smacked me in the ear with a ball bat. Thanks for letting me cry guys.
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Cry on...you have good reason. Last I heard, Kleenex wasn't going out of business. I am so very happy that you got an appointment. Now - make sure you are clear with them about what is going on. No "brave face" - make sure they understand and do not be satisfied with being placated. There is a reason for the pain - their job is to find it. Your job is to describe it as well as you can.
We're here for you and will be waiting to hear how the appointment went. Great big hug here for you (and I don't mind being a bit soggy ((((((((PATTY)))))))))
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Thank you Donna. I do tend to try to be too tough. I made some notes so that I don't forget or if I get too hard to understand i can just point. This is kicking my butt though. Heck I'm letting my mom drive me - if you had ever ridden with her you would know I feel bad.
I'll let you know what they have to say. I'm 6 months post surgery so it's probably time for a scan anyway. Only 2 monts post radiation but I slept more and had less of this throbbing type pain during radiation. I hope that they can just hit me in the left ear with the ball bat and put everything back where it is supposed to be.
Wish me luck Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
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