| | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Hello Jim,
What you are facing is what my mom just had done in Sept! you've got an excellent attitude and I believe that in and of itself is half your battle.
We're here for you, any questions, you can call me. I hope that I can help with some answers...at any rate, I will understand some of what you may be going through. Also, there are a few others here on the board who have had brachy therapy.
Donna
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Hi Jim,
Me again. I was just reading your post again, wanted to ask you, did they speak to you about a mouth guard? My mom had to wear one while she was in isolation for the three days, her RO didn't want to hit her jawbone...she was so out of it and alone a lot of the time, when they came in they found it all over the place but in her mouth! She was frightened at the prospect at being left alone for so long, but as it turned out she had different nurses and her RO were in quite a bit to see to her needs. Also family was allowed in for a little bit at a time.
They also told mom that her taste and saliva might be compromised but they really were not affected.
My mom's chin healed up rather quickly where the cath's were placed. She had the temp trach in for a month and the ngtube was fractured, if you can taste/feel the liquid it might be damaged. Mom could feel it all along, we weren't smart enuogh to tell anyone at the hospital.
Jim, who will be helping you after? After all those treatments and procedures I assume you are going to be exhausted. You might want to make sure that you have help.
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hi Jim- I feel for you. Its so hard to approach each day knowing of the big hurdle you have to jump over - but you are going to do it and get through it and once you can begin healing from the treatments you'll start to feel so excited that you've beaten this once and for all. We are thinking of you and sending you lot sof strength to get through it all. Find lots of books, movies/ tv series TV whatever it takes to distract your mind from what is going on with your physical body.
Big hug to you!!! Wish you didn't have to endure this.
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | 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 | Donna, my daughter wants me to stay with her for a few days. Dr said to wait until I am ready for discharge and he will help make the decision. If I need any info I wil contact you. Thanks to the rest of you for caring. I have the 6 disk set of Dale earnhardt and will watch it to kill time. LOL Daytona racing starts the 9th of Feb and I will be ready.
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 | I do have to add, that I will miss the caregiver I had the 1st time. But she has her own life to figure out. JUst say a prayer for me from time to time.
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 | I needed another hug liz ((((((((((((hugin back)))))))))))))))))
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 | Liz, I do see you a lot when not many are online. Maybe we can both sleep tonite.. I hope Larrys Daughterhad a nice 2hr trip and her dad was doing GREAT when she left to go home.
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 | david, it is Erbitux that I will be getting, LOL I got the name from Donnas post .
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 | Now Jim, I'm not your MO so I don't know what they are going to go with but I would suspect some combo of maybe a platinum based and maybe a biological chemo like Eribtux. I don't know but you should definitely ask.
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: Jan 2004 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2004 Posts: 104 | Hi Jim,
You're on your way now buddy, I hope it's a relief to get it moving. I'm glad you got your questions answered about the brachytherapy, I hope you can ease your mind on that part of your treatment. Just keep feeding that tiger the steak until you are able so he can help you claw your way through your treatments.
Big cyber hugs as your right, they help!
Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"
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