#2854 06-22-2004 04:30 PM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Feb 2004 Posts: 261 | Hi everyone! I hope everybodies spirits are up! Anyone have blisters in back of mouth above uvula a month out from radiation? I think certain foods are bringing it on but have not figured it out yet. Got peg out yesterday! YAY! The hole just sealed right up & today after shower it never even oozed or anything. Amazing!
dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
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#2855 06-23-2004 02:59 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Erik,
Congratulations on yet another milestone...PEG day, if you will! I was so hungry when they took mine out and it was lunch time when I left. I suddenly realized I forgot to ask when I should eat. My wife called the nurse and called me back and said no delays or restrictions. I immediately pulled over and got some fried chicken (one of my favs). It still felt a little odd and I was wondering if the chicken was oozing all over the inside of my abdominal cavity. Yes, it was amazing.
I got a lot of sores and blisters about that time that cultured out to be thrush. I don't know if that is your case but it took a while for my oral area to realize there wasn't any more saliva coming. I also noticed sometimes it was brown and on the tongue.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#2856 06-23-2004 06:54 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | You still have a uvula? Mine was melted -gone (still)! Yes I had blisters and ulcers from radiation damage for some time post Tx (like Ed). Some of it due to thrush, radiation damage, irritation from some foods (although I can't prove that). I hacked up blood and dead tissue for a long time as I recall. Having low red and white blood cell counts delayed everything as well. I'm sure that vomiting a lot didn't help either.
The good news - it will pass.
Patience is the word - it takes to heal.
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#2857 06-23-2004 05:37 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | My red and white blood counts were back to normal yesterday for the very first time since August.  Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#2858 06-23-2004 07:59 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | My white cell count is still low (3.1) 16 months post Tx. It tanked at 2.1 so at least it's on the rebound. I am only getting bloodtests now twice a year -can't stand any more needles.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#2859 06-24-2004 03:52 AM | Joined: May 2004 Posts: 218 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2004 Posts: 218 | Erik,
I had the same thing tiny little zits on the soft palette, uvula,etc. Still get one or two every once and a while and I am 4 months post.
I will admit it freaked me out but my doctor told me it was normal and that was that. I can eat anything I want now, even Tabasco. I really missed that. I put it on anything that doesnt move generally.
Hope all is well. Hey Gary, with an T3N0M0 38% is ridiculous! Your doctor should be flogged for saying that. The more logical stat would be 80-85% FYI.
Wont he be surprised when you attend his retirement party in 20 years!
Take it easy.
Robert
SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04.
41 Years Old At Diagnosis
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#2860 06-24-2004 06:19 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | I stand corrected it was actually 43.2% (for stage III that is). Stage IV it drops to 29.6. These are the published 5 year survival rates with a 95% accuracy They couldn't decide whether it was a stage III or IV, giving me a III/IV classification. The data came from the 2002 American Joint Committee on Cancer (AJCC) cancer staging manual. Here is a link to a comparison between the 5th and 6th edition which explains a lot about staging for those interested (at least there is a decent explanation of the TMN coding system). The cancer staging manual itself is for sale and not available on line. http://www.cancerstaging.org/products.html We DID talk about me attending his retirement party! My RO thinks my 5 year odds are more like 80%. The statistics are a rough number and don't take into account many other variables. For instance the recurrence rate is very high for people who continue to use tobacco products (sorry Eddie) - I don't -nor do I drink or use drugs and I am white (although being male works against me). There are many other variables. My specific tumor was a polypoid type which is easier to treat, it was also well differentiated and there were no signs of metastesis or any regional or distant involvement. I mention this because I know many like to run with the statistics and it's actually very complicated. The odds of survival are still far better than winning the Lotto or even Russion roulette. I leave the statistics up to God and live one day at a time. Sorry to hijack your thread Erik...
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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