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#61266 07-08-2007 09:37 PM
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Allan Offline OP
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confused I am now 3 weeks out of rad and still feel bad the first two weeks after rad were the worst weeks of my whole life i have never fault so ill the Flem in my throat was bad and made me sick all the time . it now comes in stages one day sick and ill the next i feel OK , still having probs sleeping my mouth tastes bad my breath is disgusting and my tongue and throat are unbelievable sore ,my tongue bleeds from time to time ,, when does this get any better i cannot eat anything having to use the peg all the time (i could eat when i was in treatment) it is now getting me down i expected to feel a lot better buy now , am i still on track or should i try something to help my probs if so what , your hopefully and very depressed Allan mad confused


age 52 heavy drinker and heavy smoker stage 111 squamous cell at base of tongue trying to give them all up ,8 lot of cetuximab and 35 lots of radiation , gave up smoking at the start of treatment. only drink now in moderation
#61267 07-09-2007 01:26 AM
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Allan, I guess this is good news and bad news but yes, you are still on track. Three weeks out of rad is when you start to feel better but it isn't dramatically better (at least in my experience, some people get lucky and recover much faster). So the fact that one day you are sick and the next not IS better. Two weeks from now you will probably notice somem other small improvement. Recovery from this can be very very slow.

What are you using to help with the mouth pain (I had really bad mouth pain for months after treatment and I still have chronic mouth pain and sensitivity but it's managable and no longer feels like my mouth is filled with battery acid)? If you don't have pain meds that make that managable, go back to your doc and see if you can get soemthing stronger. Are you rinsing with some kind of mouthwash that can help with the mucositis?

As for the PEG, this is why people get them for when you get to a point like this. But if you can, try to swallow a little something every day, even if it hurts, to keep your swallowing muscles working.

Hang in there!

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#61268 07-09-2007 01:28 AM
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Alan i am so pleased to see you have returned to the forum.
Everything you feel is perfectly on track for three weeks post rad.Its vile and depressing and may still get worse before you see any improvement.I will leave help and advice to those who are unfortunate enough to have been in your position and i am sure help will be on its way.
In the mean time keep your chin up lad it WILL get better.

love liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
#61269 07-09-2007 03:43 AM
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My husband is now 10 weeks out of rads, 1 month from his last chemo and this is the first week-end he feels half decent. It is a long hard journey. It does get better but seems like it takes forever. He is still using his peg 100% of the time. He will take a few bites of watermelon or mashed potatoes each day. Actually he didn't take anything by mouth for the past 12 days in a row. His throat hurt like hell. In fact you have been to hell and inch by inch we claw our way out. The muscus is finally subsiding also. Hang in there! We are all here for you. This forum has been a blessing to us. LJ


CG to husband 53,39 rads. 3 rds cisplastin ended 6/2/07 Tonsils removed 1.10.07 11 of 20 nodes positive- lump removed on rt. side of neck 1/26/07 cancer of nasal pharnyx TXN2MX 2nd rd. of chemo- carbo/taxol on 6/11/07
#61270 07-09-2007 01:59 PM
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I am 4 weeksout of treatment and did not feel remarkably better until this fourth week. Taste and mucus problems are much better. Hang in there you are on track.


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
#61271 07-10-2007 03:06 AM
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Allan Offline OP
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Thanks for the support i am on morphine patches for the pain and swill my mouth out with cordesol mouth wash several times a day to try to get rid of the bad taste tryed to eat some mushroom soup today and it tasted disgusting and after 5 or 6 swallows my throat got very sore i had to stop i suppose its normal that nothing tastes like you remember , i will keep trying thanks for the support , cheers Allan


age 52 heavy drinker and heavy smoker stage 111 squamous cell at base of tongue trying to give them all up ,8 lot of cetuximab and 35 lots of radiation , gave up smoking at the start of treatment. only drink now in moderation
#61272 07-10-2007 08:09 AM
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You should be turning the corner now. I had the same issue the worst was the 2-3 weeks after the treatment stopped. Then it gradually got better. About 4 weeks after I started to begin to feel normal and some taste started coming back and I could start eating much better.


SCC R-Tonsil T2 NO MO Dec 2003. Completed IMRT Radiation only to tonsils(72Gy) and neck(55Gy)March 04. Detected at age 50.
#61273 07-10-2007 02:17 PM
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my dr explained stopping treatment to me as being similar to stopping a freight train. We want it to screach to a halt, but the radiation continues to do cellular damage for weeks after you stop receiving treatments. I wanted so badly to feel better when it stopped and I just kept getting worse. In fact, the few months just after treatment were actually the toughest of them all for me physically, and mentally. Nobody prepared me for this emotionally and depression followed which didn't help at all. But eventually things get better, taste returns, sores heal, strength and stamina return, sex drive returns, saliva production improves, mucus decreases and thins, smiles multiply...just be patient and hang in there. I stopped treatments in mid june and in my head I set July 4 as my day to be back on my feet. In reality it was Christmas time or more before I was gaining weight and feeling decent...

#61274 07-12-2007 04:58 AM
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Thanks for all the replies. Thanks for sharing. Reassurance is a great thing. My husband still has his sore throat and things still taste strange.
Carol Ann..


Carol CG to Husband age 60 Stage IV SCC right tonsil T4AN2B tx rad x 35 chemo x 2 Currently after treatment no sign of cancer in throat. (all clear to date)

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