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#182926 06-29-2014 09:21 AM
Joined: Jun 2014
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My dad finished his radiation 32 days ago and he doesn't feel any better. Mouth sores and tongue still sore. Anything but water in the mouth burns like acid. He has no energy at all. Feels like he's never going to get better. Is this normal?


robin
My dad age 62 lymphnodes in left cheek removed (two cancerous) chemo/radiation ended May 31, 2014
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Welcome Robin, It's pretty common to still have side effects at this early stage, but let the doctors know for a proper evaluation, and to rule out other possibilities, and treatment for such things as mucocitis, dry mourh, thrush or any bacterial or viral infection, nutrional counseling, etc. if needed, and probably is. I felt best around 3 months in some aspects, 6 months, a year and so on in intervals, and can take up to two years to recover, sometimes longer. I'm still recovering 4.5 years later. It's a marathon for sure, but things do get better, but not overnight.

Maybe try smart water, and avoid foods that are acidic, spicy, too hot, sharp textured as not to irritate the mouth, and eat softer foods. Sugar and milk even burned my mouth.

Good luck, and if you have any questions, ask.


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
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02/19 Finally Cancer Free Took 10 yrs






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Hi Robin - I also read about this question on the Introduce Yourself thread.

Let's try not to duplicate posts in different forums in the future. It generally doesn't help and it just eats up bandwidth.

Your dad is an interesting situation because he has already completed treatment, so either forum is appropriate.

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

Joined: Nov 2013
Posts: 104
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4-5 weeks out is about the worst for most people. At that point as a fairly fit younger man I was sick of being sick and it was taking an emotional toll. I could barely drink water and eat very soft foods.

I finished treatment jan 22 and in the last few weeks I can eat things without getting a sore throat afterwards.

I guess I'm saying it's slow going and he still has some hurdles, but it does get better.


Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
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If your father isnt getting in at least 2500 calories and 48-64 oz of water every single day it will make his recovery much slower than other patients. Oral cancer treatments are brutal to say the least. Your fathers intake must be consistent even though he doesnt feel well and his mouth is sore. Im a little surprised at 32 days post rads he hasnt improved even a tiny bit. I know its a long hard road but by now he should be seeing some improvements. Talk with his doc and check his intake. If he isnt hitting the above minimums then thats why he still isnt feeling any better.

Recovery can take a long time. Its a long slow process full of ups and downs with a few setbacks thrown in too. Its not easy but if his focus is on his intake he will start to feel better a little at a time. A complete recovery can take all of 2 years, especially the sense of taste. Most patients notice some small improvements at about 3-4 weeks post rads. About 6-10 weeks post rads most patients will begin to have some of their sense of taste return.

Hope he begins to feel better very soon. Best wishes!!!

List of Easy to Eat Foods


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

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