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fish #177651 02-21-2014 09:47 PM
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A great report! Hang in there. You are right at the point when things can start getting rough. Only three things to remember: hydration, nutrition, and pain management. Keep these in control and you will make it through with minimal disruptions.
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 #177661 02-21-2014 10:32 PM
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I'm really glad to hear things are going well for you. Stay on top of things like you are, my friend. You will soon be the second person with smooth sailing in recent months. It is a testament to the improvements newbies can expect between better treatment and all the fine folks here that help identify all the pitfalls to avoid.

You're a rock star Fish! I would use the Spanish version but I want to add the beginning part with that funny character that will wipe away my post. 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 #177848 02-28-2014 07:30 AM
Joined: Nov 2013
Posts: 37
fish Offline OP
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I will be completing #18 out of 30 today. So far the side effects have diminished and I haven't had to break into my GI Cocktail (Licodane). My last taste bud died yesterday afternoon and now steak taste like spinach and potatoes taste like ribs. On a more serious note I am doing very well. My sores on the tongue have healed and the other sores around the cheeks are manageable. I have three to four cups of coffee a day(its the good stuff and yes I can still taste coffee!). My energy level is good and I am keeping on my weight. For those who will go after me please keep in mind that your attitude will get you through 90% of this treatment. The other 10% will be the tried and true directives that others before me have listed. Not all side effects will be the same, but if you are very disciplined in your care, you will most likely avoid the more serious pitfalls. 2 1/2 more weeks and I will be done! I am still prepared for the worst and hoping for the best.


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 #177856 03-01-2014 05:34 AM
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That wonderful attitude you maintain is your biggest allie.

That steak tastes like spinach and potatoes like ribs is way better than my case was, where everything tasted bad (except Ensure). Ensure is what got me through the last 3 weeks of treatment and the first 2 to 3 weeks after.

I didn't reread all your thread before posting, but at the halfway point I expect my side effects were about the same as yours. The mucositis got worse in the last week of rads and then stuck around for another 5 weeks or so. Even then lidocaine got me through it, never needed anything stronger.

Coffee seemed to help with the ropey mucous that developed and still persists even today, 8+ weeks post radiation. But, that's about my only symptom now. I may be that guy that Uptown was referring to in the above post as I had very few side effects from treatment. So, there are people who get through it relatively unscathed.

Even taste has returned for the most part; beef still doesn't taste quite right, and some days chocolate tastes good and other days it tastes blah, but everything else is enjoyable.

Keep up that great attitude, you are an inspiration to others who will follow.

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 #177861 03-01-2014 08:37 AM
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Fish, I sure hope you like spinach and ribs! You are doing an amazing job.

Yes, Tony, it was you. I know it was tough but you have now set the "walk in the park" standard for a journey through rads. Always share what worked for you so others have additional tools in their toolbox.

You two, have rocked it out of the park...like a BOSS!!


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 #178001 03-07-2014 06:16 AM
Joined: Nov 2013
Posts: 37
fish Offline OP
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Treatment number 22 is today with 8 more left to go! I can really see myself in seven days participating in the 4 mile Westport run! Granted I won't be running this year but maybe a light jog for a little ways and walking the rest. So far the sores in my mouth have been held at bay. I don't have any pain in my mouth at this time! I am not taking anything but making sure that I am doing my salt/baking soda rinses two to three times a day, keeping my mouth clean and drinking around 1 gallon of water throughout the day. I have also kept up on my calorie intake. I haven't eaten the healthiest foods lately but I am planning on jumping back on the nutrition wagon this weekend. Tax season has been getting in the way of planning my meals. My weight is still holding and haven't lost any. My energy is around 90%. I had a sore throat a few days ago from the sores and immediately started gargling the salt water/baking soda rinse which extinguished the pain. Next week is a big week as it will be the last big chunk of treatment. I will be stocking up on nutrition this weekend and getting ready for the final big hurdle. My skin has a slight sunburn and I've lost a little bit of hair at this point. My face feels tight and my tongue has shrunk a little bit. I haven't had a problem with dry mouth except when I wake up in the morning. I'll post an update next weekend and a final treatment update the following week.


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 #178007 03-07-2014 07:31 AM
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Administrator, Director of Patient Support Services
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fish, you are doing GREAT!!!!! Your attention to your intake has significantly helped you sail right thru this far easier than most.

Continue to focus on your intake. The worst days are in front of you as rads gets progressively more difficult, even after its finished. Keep doing everything you already are and it will be over before you know it.


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 #178308 03-14-2014 08:01 AM
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Posts: 37
fish Offline OP
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Treatment #27 today - I just started feeling the wrath of the radiation. But this is doable!! I was fatigued last night so I just spent the evening watching the tournament basketball games. The sores on the tongue where proclaiming their presence so I broke into my licodane and extinguished the pain. I didn't eat as much yesterday, but will make sure I make it up today. My tongue is swollen(this was overnight). Okay..enough whining and let you know my outlook. I am ready for anything this throws at me and will be done next Wednesday. I know it will get worse before it gets better, but I am ready. Overall, side effects are manageable and I haven't missed a day of work! I'm not working a full tax season schedule, but I understand this is why I haven't hit the wall to this point.


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 #178329 03-15-2014 10:27 AM
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Posts: 78
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Glad to hear progress with a BIG smile on your face.


Special thanks to OCF and all respected members here for their support

Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear
fish #178356 03-15-2014 10:58 PM
Joined: Aug 2011
Posts: 269
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Nice to hear you are hanging in there with such a great attitude! I'm looking forward with you to Wednesday. The last day really feels so good mentally.


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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