| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I go next Wednesday for a test of my hearing and eardrums, then immediatly after to the ENT. THen Friday I go for a biopsy of my tongue. These will determine if I go for the hyperbaric treatments. I feel like a damn ping pong ball at times and don't know which side of the net I belong on. This fantastic mucous instead of becoming less, is worse than ever. Hell, it even makes it difficult for morning coffee . It seems the hot coffee must loosen it up to let it become a hindurance.
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: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | EzJim, I've just got to say what an amazing man you are. What a day you will have next wednesday. Steve has his 1st post treatment checkup that same day so if he starts complaining about what a long wait it is to see the doctor I'll be telling him about what you are going through. Your an inspiration, along with many other people on this board.
Wendy
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
17/03/22 lost the battle. Missed dearly
| | | | | Joined: Feb 2009 Posts: 88 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2009 Posts: 88 | Aw Jim you sure do keep going through it. But you are a tough guy and seem to be upbeat so much you are an inspiration for us to keep on trucking. I feel so bad that you don't have someone close to help you, I've said it before I wish I was closer. My kids used to live in Dayton OH but moved last year to Knoxville TN and I hope we will be joining them soon.
I will continue to keep you in my prayers as we may be heading down the the road to hyperbaric treatments also. The doctors will wait to decide but Brandy will be losing a tooth that is loose with the bone so we will see.
Take care and God bless.
Bonnie
CG to daughter Brandy age 31 initial dx 10/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
| | | | | 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 | Jim: Go and get a Water Pik and in the morning use it twice. That will seriously help wit the mucous and will help with general mouth health. You can add biotene mouthwash or salt or whatever to the water well of the water pik. Just open your mouth and let the water drain as you aim the Water Pik all over your mouth and back of your throat. It has been a Godsend for me! Give it a try.
I'm leaving on vacation on Sept 4th but will be checking in every few days to see how you (and everyone else) are doing. Your angels are on duty Jim.
Hugs
Donna
Last edited by Pandora99; 09-03-2009 10:16 AM.
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: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Donna,
The Waterpik is a great idea! I would have never thought of that for helping break through the mucous. That would have come in handy for my Mom. Jim, that sounds like something worth trying! Stay strong and I'll be keeping you in my thoughts and prayers. Sure hope that day goes by FAST! Take care.
Nancy T
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I wll be buying a watewr pic. It siunds good to me too. Now to change my post a bit, I had 3 more calls on my answering machine when I came home this afternoon. They had the schedule messed up bad. LOL I go in the morning at 9:30 to have my ears checked out by an ENT , the see My Surgeon right after and at noon, I see the Anesthesiologist. Wednesday I will have my tongue shrunk again by taking more of it off. This will be the 4th time. I want to thank you for all of thr good vibes I picked up in here, and the good ideas.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Nobody could say that you lead a boring life.
I don't know how you do it!! Good luck next week. I'll be thinking of you.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | After 6 hours this morning until this afternoon, I finally got finished at the Hospital and Drs. They had some type of emergency. My Dr says there is much more bone exposed than a week and a half ago on my jaw. He wants to put the tubes in my ears so that he doesn't have to put me out 2 times in a week. He tells me that it would be much easier, and that my ears would feel better with them. LOL Go for it Dr. This is the anestisiologist I had in April for the biopsies. Nice guy and he told me we would go the same route as last time. I have to be there at 6:30AM Wed and surgery is at 8:30 and I was told that this time to bring a driver with me. Now you know the rest of the story.
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: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Jim,
Tubes are for little kids - are you aging backwards? LOL Here's hoping that all turns out well for you this week. One thing they will never be able to do on you is a goodhumorectomy.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Jim, I sure do wish you didn't have to go through more "stuff." I will have you on my mind and in my prayers on Wed. Hang in there, Big Guy!
XOXO--Colleen
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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