#91998 03-17-2009 04:27 PM | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I am hurting more than I have ever hurt in and around my mouth on the right side. The right side on my throat up to my right jaw , the floor of my mouth\, my tongue on the right side and into the floor under my tongue, my right ear so bad don't touch it and in the right side of my head into my eye. I am a toughy but right now am about to say this time it's too much without saying the pain is the bpss. Ay least temporaily. I am calling my Oncologist in the morning and am now waiting for my appt the 25th. Can't even eat or drink ensure.That's bad for me. Too skinny now.
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) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Hell too bad I don't type ledgibly ..
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: 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 | Jim if the pain is that severe, go to the ER.
If you think you can wait til tomorrow, call first thing in the morning and insist on being seen tomorrow. Do not take no for an answer. Please post that you are ok after the doc checks you.
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: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Jim, I come back here to catch up with folks and I can see a lot of people I care about in pain of one sort or another--including you. Please get in to see the doctor as soon as you can - no one should have to endure pain like that. Thinking of you.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | If I went to the ER I would be kept all night, spend an extra $50 and they would know nothing maybe except what I told them. I'm callin the Dr no later than 9 this morning and one way or another if I have to just go walkin. He has always said come down now.
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Jim,
Can't you get your appt moved up?
What would you be telling a newbie if they posted what you just did?
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.
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Jim
I am so very worried about you. I will drive over to OH and take you to the doctor if you need me to!
Please get in there asap and let us know that you are OK - none of us should endure severe pain like that.
Thinking of you 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: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Come on over Patty.. LOL I'll be waiting. David they office just called back. He is overbooked now because he was called out of town for a week. I was originally scheduled for the 10th myself and rescheduled for the 25th. THe only eway I can get in before then is if someone cancels. They did ask some questions about the anneurysm surgery I had. I have no doubt I was told the truth because he has even taken me in the evening when he could spend more time with me. I'm waiting Patty. LOL Thanks for the offer. I have enough narcotics here to keep me pain free, I just hate to take them because of that fun time constipation.
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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Jim I hear that those individually wrapped prunes taste just like candy - at least that's what they say on the commercials. LOL
All I can say is you had better not sit there in terrible pain without going to the doc or the ER mister and then get really sick. It could be something serious you know? How far away is your sister from you?? Is it possible that your doc can just call and talk to you so that he can give you suggestions over the phone?
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 | Glad you are taking some pain meds.
You know David is right..... What would you have told a newbie? .... GET TO THE DOC!!!!
Call your doc again tomorrow and push them to squeeze you in. Sometimes the people who answer the phones for appointments are like guard dogs. Once I had to tell them to go ask the doc cuz he told me I can get in immediately anytime I need to. After about 5 minutes the girl came back and asked me if I could be there in an hour. Sometimes you need to be aggressive to get results.
Hope you feel better very soon, keep us posted.
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 | | |
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