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Susan t #129002 02-02-2011 03:56 PM
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Congrats on finishing radiation! Now let the healing begin!!! To heal faster make sure you have a high protein diet. I add high protein powder to my feeding formula. You can also get some unflavored kind and add it to whatever you are able to drink. Keep rinsing your mouth a few times per day with a mixture of 16oz warm water, 2 tsp baking soda and 2 tsp salt. This will help heal the mouth sores. It can take up to a few weeks for them to heal. Taste will take longer, it can take up to 2 years for a full recovery. In about 2 months you should start to taste again.

Wishing you a speedy recovery.


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
ChristineB #129016 02-02-2011 06:39 PM
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Thank you. 2 yes for full recovery wow that's long. How and what did you taste first? Thanks for sly you Input.


Have been undergoing biopsies since 2008 until last October it can back cancerous tumor 2c on right side of tongue. Had surgery to remove and also neck dissection. That was Nov. 8th. After that extensive dental work an now Currently undergoing radiation on my second week.
Susan t #129033 02-03-2011 06:39 AM
Joined: Sep 2006
Posts: 8,311
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Remember each of us can be different but for me even though I was never a big sweets eater in my adult life I never really lost my sweet taste. Everything else but not sweet. My dry mouth and taste seemed to improve together. I didn't really notice an improvement until my 4th month post, then the 5th, a really big improvement in the 15th month and then another small plus in my 24th month. At first I noticed that I could taste things with my first bite and then blah after that. That slowly improved until I could taste each bite but again be patient as your damaged cells often do take a couple of years to reach maximum recovery. Fruits (other than bananas) took the longest to come back and I used to eat fruits every day. Go figure! Drinking carbonated drinks bothered me the most for the longest time but I hardly ever drank them pre Tx so I didn't care. Beer which I did enjoy pre Tx took at least a year to taste normal.

I estimate I am back to 95% pre Tx normal in both taste and DM.

Again this was just me.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #129129 02-04-2011 08:38 PM
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My RO told me I would start getting some taste back after six weeks, but that the first tastes to return would be sour and bitter. I finished radiation 1/13. I am 3 1/2 weeks out and within the last week have had a vague hint of taste when eating an orange freeze milkshake and again when eating a chocolate peanut M & M. With the chocolate,, I found that what I tasted was not sweet but bitter. There are other things (mainly meats) that I don't feel like I taste, but at the same time I no longer feel like I am eating cardboard when I do try to eat them. The sores in my mouth healed last week, but my tongue is still really sensitive and just having food move around in my mouth is uncomfortable. It does get old not being able to taste things normally, but hopefully "this too shall pass!"


Susan
Age 51, married with four kids age 11-18, 9/1/2010, Bx: high grade mucoepidermoid CA left sublingual gland.
10/8/2010, wide excision left floor of mouth, modified radical node dissection left neck.
T1N0M0. IMRT started 11/22.
Never smoked, light social drinker
Also happen to be ICU RN
Joined: Jul 2009
Posts: 1,409
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Susan, as David says, we're all different. I too never lost my taste for sweets. But then, I've always been a sugarholic alas.

I have a feeling you'll see a gradual return to being able to taste most things. Emphasis on the gradual. I'm about 20 months out and some things still taste a bit odd. Water sometimes has a metallic taste, for instance. But other than things like vinegar and spicy foods (both of which I've always loved) I'm basically back to eating everything, even if the taste is still dulled.

Hang in there - it's going to get better!


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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
David2 #129143 02-05-2011 04:00 PM
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Hi Susan,

I did not get my taste back until around 3months after treatment and it was only minimal. Now 5 months after tx, i still have not regain all of it. I can taste the first few mouthfuls and then it disappears. I still cant taste sweet things, but i eat ice creams all the time (i dont understand why either davidcpa). Eating only became comfortable just very recently, i was still getting water blisters everytime i ate. Its a slow process, be patient and itll be back before you know it.

Minh


35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
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