#92517 03-25-2009 08:39 AM | 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 | Well, Not the best of news.he Dr asked me about the pain I have been having. I explained it to him and showed him where all it hurt. He proceded to exam my neck outside part and then up to my face and all. Then he sprayed inside my nose and did the scope thing and said yep. I see whatever he said, Then he got into my mouth and checked it very thororghly. THe next I heard is the Dry mouth study is not going to inclde me. He is setting me up for xrays of my jaw, Biospsies, CatScan, maybe a Pet scan and asked if I needed pain meds. He said he could see whatever on my tongue ad knew it had to hurt. He gave me a script for his Magic mouthwash that has 3 painkillers in it. It is good and now I don't have to just take it at bedtime. I remember getting a real bad toothache one time ad I swear it's in my mouth again on the right lower jaw LOL I got the bloodwork for the Director of the Cancer Center and then came home. I see my Dr the 9th of May after I have had most of the tests. I am no candyass, but he sure had tears in my eyes this morning. Damn that probing and pinching can hurt. I told him, don't stop , just do what you have to.
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 | Oh Jim,
I am sorry that the news wasn't better.
Hopefully the magic mouthwash will get you some relief from the pain so that you can take in more food and Ensure to get your strength up and put a little weight back on before you start all of these tests.
I have to run out to PT after I lock up my dogs. I'll be here most of the day if you feel like talking. Maybe with the pain meds you can take a little nap today? I know I lose sleep when I am in pain and that just makes the pain worse.
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: Dec 2007 Posts: 57 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Dec 2007 Posts: 57 | As goofy as it sounds....I am sending you a big hug. As my classroom went to lunch, I decided to log on to see how you were doing...odd...I know. I said a prayer for you.
Noemi
Brother diagnosed SCC August 2005, radiation and chemo- 2 rounds, total glossectomy Sept. 2007, passed away May 21, 2008
"Everyday is beautiful" he stated on a cold and foggy Chicago winter day.
| | | | | 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 | Here is an Angel Hug. ((((((((((((JIM)))))))))))))
I know how scary this is. I have tears in my eyes just typing this, we feel your pain and your anxiety. Nope, you sure never have been a candy ass and you aren't going to start now.
We will deal with whatever this is as best as we can in whatever way we can. We are here with you.
In the interim, get rid of that pain and try to keep busy with other things and not let this consume each day. Cancer steals enough time from us - it doesn't need time that we "give" it!!
More hugs
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: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Jim, keep up that well known strength of spirit, you'll get through this. Sending all the positive vibes I can muster your way.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Jim,
Today is the 25th of March. I do hope your next appointment is the 9th of April and NOT the 9th of May. That's a month and a half away. Far too long to wait especially if the results are not negative. It's also too long to wait with the amount of pain you are having. I hope your pain killers are working and your are now feeling a little better.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hi Jim- Sorry to hear that the exam was so painful for you. I hope the new painkillers work thier magic. I hope that all the tests come back negative for you. We are here to support you every step of the way Jim.
Big hug to you too!!!
LOVE Kate
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | 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
Im so sorry to hear your doctor visit not only hurt but wasnt the best news. Hope you get some pain releif from the magic mouthwash.
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) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | The appt is the 6th of May for the results of the tests we are going to do up until then. Have to do all the goodys before you bake the cake. LOL J/K This will be with my Oncologist. They will be calling and giving me the times and dates to see the other Drs.
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 | The pain killers will work if and when I take the right dosage, I just don't let thm do my driving for me. I have had so many surgeries over the last few years not counting kidney stones 12 times, that I learned to ignore the pain up to a certain point. Now here's what I came to do................................ (((((((((((((((((((((HUGGIN BIG TIME))))))))))))))))))))))))) for all
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
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