| | Joined: Jan 2010 Posts: 142 Senior Member (100+ posts) | | Senior Member (100+ posts) Joined: Jan 2010 Posts: 142 | I saw the team Wednesday they are going to radiate from my left ear to across my lips. Doc said he is sorry to have to do that but afaid not since the cancer was so close. I understand the burns on the outside. But I can not get my head around what this is going to do to the inside of my mouth. I did try to search this site but I am not finding the answer. Does it start burning after the first treatment does it take several weeks. Can I assume that the inside becomes uclerated?
55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer 1/18/10 Clr PET 1/27/10 Surgery found Perineural invasion 3/22/10 Began Rad 05/05/10 34 rads 8/19/10 Clr Pet Scan 12/13/10 Clr Ultra sound/biopsy 5/4/11 MRI Clear 8/2/11 All Clear 5/25/12 All Clear 6/3/2016 All Clear 5/25/2025 All Clear
| | | | | 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 | You will not notice anything either inside or out for a couple of weeks, but eventually you will get blister type sores inside your mouth and for me anyway, the exterior burns didn't happen until near the end of radiation. I think (but I sure could be wrong) that having an area such as the face radiated - an area which gets alot of sun and is not quite as tender as the neck area - MAY result in less severe burns. I found the blister type things inside my mouth would break and bleed a bit, but I just kept the area clean and kept taking pain killers. Do not try to be a martyr/hero with regard to pain killers - there is no prize!!
Good luck.
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: Jan 2010 Posts: 142 Senior Member (100+ posts) | | Senior Member (100+ posts) Joined: Jan 2010 Posts: 142 | Am I stupid to think I can work during all this considering I basically talk for a living???
55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer 1/18/10 Clr PET 1/27/10 Surgery found Perineural invasion 3/22/10 Began Rad 05/05/10 34 rads 8/19/10 Clr Pet Scan 12/13/10 Clr Ultra sound/biopsy 5/4/11 MRI Clear 8/2/11 All Clear 5/25/12 All Clear 6/3/2016 All Clear 5/25/2025 All Clear
| | | | | 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 | First off ALWAYS keep in the back of your mind that all of us can react differently to any aspect of our Tx but having said that I believe it's safe to say that a majority of us could not work for some period of time during the Tx and that often occurs from about the 4th week of Tx till the 3rd week post Tx. Again it may be totally shorter or longer for you.
I had tons of pain in my mouth and throat but really didn't have any blisters to speak of and the outside of my neck was nothing more than bad sunburn and that only lasted about a week way late into the Tx.
Fatten yourself up as much as possible until you can't anymore. Your taste may well disappear shortly after the Rad begins.
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: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 396 | i dont know of anyone that was able to work all thru radiation treatment. andy stopped working after his 2nd round of chemo due to the nature of his job. so he was already off when radiation started. this was a blessing since it zaps your energy. he was not able to speak about his 5th week until about 1 week post treatment. his burns were like a severe sunburn that covered his face and neck...with the neck being the worst. he is 3 weeks post, and is still red and scabby.
Teresa ----------- CG to ANDY. Nasopharyngeal Carcinoma (NPC) T2N2cMxG4 stage 4. 43 @ dx 8/31/09 tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3 PORT 9/9/09, PEG 12/07/09 35 IMRT-1/wk carbo 11/30/09-2/3/10 tx stopped due to complications IMRT BOOST 3/08-3/12/10 PET 4/12/10 CLEAR! PEG out 4/14/10
| | | | | Joined: Dec 2009 Posts: 108 Senior Member (100+ posts) | | Senior Member (100+ posts) Joined: Dec 2009 Posts: 108 | Carol has finished her 2nd week of treatment and there is no evidence of mouth sores or burns on her skin. Her RO is pleased with the results so far but strongly encourages Carol to continue with the miracle mouthwash and start using Aquaphor on her skin. Keep the mouth clean and the neck area slathered with Aquaphor. I agree with Donna....accept the painkillers. You should not be expected to live with the pain. Carol has finally accepted this fact and wished she had done so earlier.
CG/Carol 57;SCC Stage IV L Tonsil T4N2bM0 12/2009 Recur 7/2010 - 2cm mass Invasive SCC L Floor Lower Jaw Surgery 8/10 - Trach,ND,p. mandibulectomy,pec flap ypT4aN0 HG Mucoepidermoid carcinoma 2nd Recur 1/18/11 - Tumor lower left lip Surgery 2/9/11 - Canceled - Inoperable 3/29/11 - Died
| | | | | Joined: Sep 2009 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts) Joined: Sep 2009 Posts: 126 | I think it is important to remember that everyone is different, and our treatments may differ some. I did work all through treatment, but I only had radiation no chemo. I also talk for a living (mental health therapist). I had red, rosy cheeks but no blisters or burns. The inside of my mouth burned and hurt. I would use the Mary's Magic Potion when I needed quick relief. I took pain meds as needed, saved the strong stuff for bedtime. The worst pain was attempts at eating. I became a fan of milk. I found the if I drank milk when I ate it coated my mouth and helped. I definately could not eat anything with any spice or rough texture, so plan on a lot of milkshakes! Remember the radiation continues to work even after treatment ends. Some of my worst days were in the two to three weeks following treatment. It does get better and soon becomes a vague nightmare.
Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
| | | | | Joined: Sep 2007 Posts: 60 Likes: 2 Supporting Member (50+ posts) | | Supporting Member (50+ posts) Joined: Sep 2007 Posts: 60 Likes: 2 | Like most of the said, in the 3 weeks is when it hit me the hardest. It was rough for me, I stop eating all together.
The best thing to help me was the the pain meds, it helped when I need it. Take it to get through the rough times, I found this stuff called Emu Oil and used it on my neck after treatments. It help a lot were my neck healed up great. No one could tell I had radiation treatment. the doctor nurse did not like me using it because the doctor did order it. I found it to be better then silver cream they were giving me.
Keep your head up and keep going.
Round 1 5/2007 - 35 Rad treatments and 6 chemo of cisplatin TPN feeding for 5 months during treatment and after. Tumor was on the right side of the tongue.
Round 2. Tumor on the lower back right jaw area. Surgery on 3/12/2010 to remove the tumor, rebuild the jaw and some work on the back tongue.
| | | | | Joined: Jan 2010 Posts: 142 Senior Member (100+ posts) | | Senior Member (100+ posts) Joined: Jan 2010 Posts: 142 | Thanks everyone for the input. I own a small business and I feel responsible for the staff as well. I know I know,worry about me, but most of our staff are single women or the only household income. If I can't work then there is no income. I can't afford to personally make payroll the last 3 years are the worst in the 16 since we started. WE have HAD to lay off 3 people since this started and I cried more than they did. 2 have still not found work. I am the only income in my house so it is hard to not worry. I have plenty of disability after 90 days but nothing for 3-6 weeks.
55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer 1/18/10 Clr PET 1/27/10 Surgery found Perineural invasion 3/22/10 Began Rad 05/05/10 34 rads 8/19/10 Clr Pet Scan 12/13/10 Clr Ultra sound/biopsy 5/4/11 MRI Clear 8/2/11 All Clear 5/25/12 All Clear 6/3/2016 All Clear 5/25/2025 All Clear
| | | | | 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 have never closed my mouth even if it is hard to understand me. LOL
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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