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Paul the only thing I'd add to what the others have said is to stay in close touch with your doctors and nurses. Some weird things are going to happen to your body that are going to redefine words for you. Be aware of all new symptoms and don't try to tough any out. Nausea, constipation, hiccups, tinnitus. Keep the bowels and kidneys working and keep those calories up.

Every journey is slightly different and everyone reacts differently. Hope yours is a smooth ride.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Joined: Jun 2014
Posts: 14
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Over the weekend I had a big switch in terms of symptoms.

No longer producing no saliva I have go into saliva over-drive; the thick stringy stuff.

Throat now very sore. Painful to swallow. Contricted.

Constipated (though did have a bm just now this morning); may have been causing the extra-queasy feeling of late?

As I write this Tuesday morning I'm generally feeling a bit better. We upped my Prilosec and maybe it made my throat feel a little better. Like I said I had a bm this morning following some 'emergency' magnesium citrate last night. And when I took some vicodin last night it did help the throat pain.

This morning also my saliva problem seems a little better. Maybe also the Prilosec?

Weirdly comforting that I'm moving on to the 'next phase' as I can start to count down the days this (throat, saliva) will be over. I know it will be a while but it's part of what everybody has been warning about so...

Spirits high. #Courage

Paul


Dx at age 47 (in 2014-06), non-smoker.

2014-06 biopsy confirms SCC in BoT w/ HPV16+, Stage T4aN2M0
main tumor plus 2 nearby lymph nodes; bilateral; no metastasis?

2014-07-01 single molar (#3) extracted

2014-07-21 IMRT (35x) and Cisplatin (3x) have begun

2014-09-05 IMRT and Cisplatin finished! (only had 2x Cisplatin - weeks 1 and 4)

2014-09 to 2014-12 Recovery. I think I can...

2014-12 follow-up PET/CT scan is negative. All clear!

2016-05 all subsequent PET/CTs negative.
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Hi Paul - I had to add a stool softener capsule to my daily intake; that helped keep things moving. It was when I forgot it I would realize a day or two later my mistake.

I lost all taste for food during treatment except the days when all food tasted really bad. When that happens you can lose the desire to eat anything and that's when mal-nutrition begins. I found I could tolerate Ensure as it didn't make me gag, plus it was pretty nutritious. The RO said I needed 7 bottles per day, most days I was able to get 6 of them down. For me vanilla and strawberry were much better than chocolate. Even on that schedule I still lost 32 pounds during the 7 weeks of treatment.

For me oral lidocaine was the life saver. Last 3 or 4 weeks of treatment I had to use it before (and sometimes during) each meal so I could swallow. My problem wasn't a tender throat, it was a tender mouth brought on by mucositis.

Chewing Trident gum helped a lot with the low saliva/dry mouth problem. There's something about the xylitol sweetener in it that helps. I tried the Biotene (original formula) products, but for me Trident worked better.

Everyone is different, what works for one may not work for the next. Your challenge is to find out what works for you.

Keep fighting, you will get there.
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

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Hi Paul. I finished 11 weeks ago and can identify with the constipation problems. Sometimes that was the cause of nausea I think. One week the RO told me she'd seen two patients that day who had been hospitalised (I think she meant that) because of bad constipation so I made sure I took the tablets provided:)

I thought the 6 weeks of treatment would never go by but it went by in a flash.

Best wishes
Maureen


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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Paul, log your poos and your meds. If you go a few days without a poo it can bring a whole world of new problems you don't want. Coloxyl stool softener is good, but it wasn't enough for me on its own. After 7 pooless days I was hospitalised for the worst 5 days of my life. Movicol is vile stuff, but it works and pushes everything through.

Its wise to have a "go bag" with just a few basics in case you get hospitalised for anything.

Keep the calories and hydration going and keep on top of your pain, don't try to "tough it out". Chin up you are doing well.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Joined: Jul 2014
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Paul, my husband has pretty much the same cancer and location as yours. He will be finishing is last 2 rads of 35 on Tues. I just want to wish you well and tell you to just concentrate on each day. Don't look ahead, just stay in the moment. The days do start to pass before you know it. I honestly can't believe we are nearly done with treatment. My husband only got in 2 cisplatins, couldn't complete the third because his labs weren't good enough. He got nasty hiccups with both chemos. His lasted 2 days and then just stopped. He felt crummy pretty much the whole week of chemo but always started to rebound a bit by the weekend. Make sure you stay on schedule with the Zofran or whatever anti-nauseas you may be on. Even if you don't feel nauseous, take them on schedule. They work much better that way. We learned that the hard way.

I'm glad you are underway with your treatment and keep up that sunny disposition. It truly goes a long way.

Carol


Carol
Husband diagnosed SCC BoT 4a-June 4, 2014
Mets bilateral lymph nodes
HPV positive
Tx started June 23, 2014
Blood clot in cephalic vein of right arm after first chemo
2x Cisplatin (hopefully getting in 3rd)
35 IMRT (hopefully complete on Aug. 12)
third Cisplatin cancelled
Last day of treatment Aug. 12, 2014
PET scan Nov. 10-NED (some PT inflammation)

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I believe you must be close to wrap up your set treatments by this week. I know (definitely) you must have lost your natural spirand mood to interact with sort of bunch of psychological changes and physical alterations due to treatments. BUT, you definitely will be out of it once treatments complete.
It's a cycle. Each ride has a specific begin and a stop. Once treatments stops, normality will start to appear...

Please update, once you complete your treatments.


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
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Completed treatment last week. WHEW!

Feeling pretty beat up but I have the wind at my back now.



Dx at age 47 (in 2014-06), non-smoker.

2014-06 biopsy confirms SCC in BoT w/ HPV16+, Stage T4aN2M0
main tumor plus 2 nearby lymph nodes; bilateral; no metastasis?

2014-07-01 single molar (#3) extracted

2014-07-21 IMRT (35x) and Cisplatin (3x) have begun

2014-09-05 IMRT and Cisplatin finished! (only had 2x Cisplatin - weeks 1 and 4)

2014-09 to 2014-12 Recovery. I think I can...

2014-12 follow-up PET/CT scan is negative. All clear!

2016-05 all subsequent PET/CTs negative.
Joined: Jan 2013
Posts: 1,291
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Fantastic! Some feel more beat up the coming few weeks then turn up, others are already on the upswing by now. Either way better days ahead. Great news.


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
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Hi Paul, I see you have just finished treatment, that is great. I'm just getting ready to start treatment, and very nervous. Also wondering if you had extra nodal extension on your Lymphnode biopsies. My RO is telling me I only need Radiation not Chemo because I did not have extra nodal extension... but I'm worried because the Chemo Dr says I should have it along with the radiation. the Tumor board was split. I'm not sure what to do, so I'd like to know what you had, since your DRs had you do both. Please let me know.

Thanks,
Angela


SCC 12/13 - T1N0
1/28/13 - removal of tumor Rt. Tongue clear margins
5/14 lump under chin, 8/14 FNA showed C and CAT
8/25 neck dissection, 14nodes removed 9 clear 5 with C
Extra Nodal Extension not present
9/9/14 tumor board meeting to determine RAD and poss chemo treatment

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