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#177301 02-05-2014 06:05 PM
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fish Offline OP
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Hello all,

I finished my first out of 30 treatments today. They will be staying in the area of the primary tumor site and will not venture into the neck area. I am drinking lots of water and eating as many protein dense calories as I can get down in one day. I am doing this without the PEG since no throat/swallowing will be compromised. Initially my doc said they were going to hit the lymph nodes on the right side but decided against it. I asked the doc if it was because the tumor did not cross the midline and he concurred. Has anyone had the experience where radiation treatments were focused in the area of the primary tumor bed and no other areas were treated?


SCC front left lateral tongue T2N0M0 After neck dissection. partial glossectomy 12/26/13. Perinueral Invasion. IMRT 60gy 30 treatments beginning 2/5/14 through 3/19/14.
fish #177304 02-05-2014 08:15 PM
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Fish,

I have had radiation beyond the primary site but I did want to wish you well. You will be done before you know it.

Last edited by Uptown; 02-05-2014 08:17 PM. Reason: Caught the special character as I hit Post

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
fish #177307 02-05-2014 10:26 PM
Joined: Jan 2013
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Glad to hear your ship is out of the harbor. My primary was BOT and nodes on one side. Nothing crossed the midline but the RO created a plan to paint both sides. I asked why if only tumors on one side. He said better safe than sorry and to be more aggressive. All my doctors, the MO, ENT Surgeon, and RO are of the be aggressive philosophy which was just fine with me. Too many people come back with recurrence. I sleep well knowing everything possible was thrown at it so never any second guessing on what else could have been done to avoid any recurrence.

You will be fine - Good luck,
Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
fish #177313 02-06-2014 06:10 AM
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Yes and No. For my primary in the tonsil, which initially came back with BOT, Valleculla involvement, bilateral lymph nodes too, I had radiation to the primary, oropharynx atea, bilateral lymph nodes, basically from the nose down to the clavicle on both sides. For my recurrences, only the primary areas were radiated. Oral cancer is different than oropharynx. Usually surgery is the mainstay for oral cancer treatment, possibly with radiation, chemoradiation for larger T, and N disease, negative prognostic factors, which surgery you had. The oropharynx it's usually chemoradiation, but this area metastasizes quickly to to the lymph nodes due to the deep structure of the BOT, and Lymphoid's. I guess after the tongue resection, neck dissection, they feel they can eradicate any remaining cancer cells in the tongue. If cancer was to return, it's often at the surgical lines.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






fish #177445 02-12-2014 06:04 AM
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Fish - today being Feb 12th means you have likely finished the first week of radiation and are beginning to be an old hand at it. Is the mask still fitting okay? In the first week I had a little swelling that made the mask tight, but by week two it was back to normal(and by week 5 the mask started to get a little loose). Are you using dental rolls between cheek and teeth and between teeth and tongue? If you have metal (amalgam) fillings in your teeth they will help prevent tongue burns from the radiation. And did you get fluoride trays to help protect your teeth from the savage effects of radiation?

If you are like most of the rest of us you have about 5 or 6 weeks more of this before treatment is complete.

Keep us posted on how you are doing through the treatment.

Tony



Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

fish #177447 02-12-2014 08:01 AM
Joined: Nov 2013
Posts: 37
fish Offline OP
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Tony,

I finished my 5th treatment yesterday. You are correct, I am an old hand at it already. I basically am throwing off my coat and shirt during the walk down the hallway and dialing up my Pandora app on my phone to listen to music. Five minutes later I'm done. I haven't had any noticeable side effects to this point. I do have dry mouth in the morning when I wake up, but I've had this since after surgery. I don't have dental rolls but they do put what looks like a foam ice cream stick in my mouth to keep my tongue on the bottom in the area they are radiating. I jogged a couple of miles the other night and I'm working full time. I'm keeping up my caloric intake and also using the Whey protein supplement once a day. I have been using my dental trays every night before bed and also a water pic a couple of times a day. I am drinking approx. 11 cups of water a day. I'm taking 2 quarts to work in a jug and filling my coffee cup during the day. I am also drinking coffee in the morning still. I stay away from soda and sweets as I want to avoid sugar as much as possible. This treatment cannot get over soon enough. I am going to take bets on which lasts longer, the miserably cold and snowy winter or the treatment period. I'm betting the winter since I would like to jog/walk on March 15 in the St. Patty's day 4miler in Westport. I have already signed up for it. I figure I will make plans and if I am not up to it when the time comes, then cancel. Thank you all for keeping me going. I have found a great amount of information that is helping me through this and I cannot thank you all enough. I will keep you all posted same time, same place next week. Although its not the club that anyone wants to join, its members are a class act!

John


SCC front left lateral tongue T2N0M0 After neck dissection. partial glossectomy 12/26/13. Perinueral Invasion. IMRT 60gy 30 treatments beginning 2/5/14 through 3/19/14.
fish #177453 02-12-2014 12:37 PM
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How much did you say the bet was Fish? I'd like some of that action please.

Sounds like you will be up for the OCF walk April 12 in San Antonio. You can always sign up on Team Uptown. I promised to walk it backwards if I get 20 people to join the team. Join mine and you won't need your own.

See you there. wink


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
fish #177455 02-12-2014 04:00 PM
Joined: Jul 2009
Posts: 1,406
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That's all great to hear, John. Sounds as if you're hitting this head on. All those fluids and calories sound great! If you do the walk in March my hat, already off to you, will be... will be... well, I guess if it's off it can't get any more off. But more off!

Good thoughts your way.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
fish #177457 02-12-2014 09:56 PM
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Administrator, Director of Patient Support Services
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I love setting goals! It gives you something positive to looks forward to.

Being almost a month post rads, you should be able to attend the walk. You will probably be on the weak side and might not be ready to walk a few miles. Dont worry, you can still attend and sit out the walking part of the event. There are several who attend that are not up to doing the few mile hike so you will have others to keep you company. Or you can always do only part of the walk.

You will LOVE the SA OCF event!!!! Elizabeth the hostess works so hard on it and there are so many survivors attending.


Christine
SCC 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 smile
fish #177645 02-21-2014 12:11 PM
Joined: Nov 2013
Posts: 37
fish Offline OP
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Going off to Rad #12 out of 30 today. I have developed a case of mucositis from the radiation scatter on my fillings. They have given me wax to cover the fillings at this point. I am rinsing every couple of hours with baking soda/water and have not tapped into any GI cocktail. I am watching what I eat, besides the banana that was irritating I am still able to drink my morning coffee and eat yogurt/grape nuts/canned mangos for breakfast. Getting ready to try out the steamed spinach and pot roast for lunch...shouldn't be any surprise here. I am drinking a lot of water and getting the mucositis in check. I am assuming at this point it won't all go away until after treatment is done, but if I can keep it at bay it will be tolerable.


SCC front left lateral tongue T2N0M0 After neck dissection. partial glossectomy 12/26/13. Perinueral Invasion. IMRT 60gy 30 treatments beginning 2/5/14 through 3/19/14.
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