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Yeah. The baking soda and salt water mixture. I don't know how or why but it works really well


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
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"OCF Canuck"
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Its non acidic and helps sooth and heal and mimics your natural body fluids.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Finished my radiation treatments. I have not lost my sense of taste and my oncologist said I would have that it won't be something I lose as the radiation keeps working.
Today was my first day without having to go to a treatment during the week. I had a paycheck at work to pick up so I had my mom drive me to pick it up and my co workers were just as cold and calus as ever. I was completely ignored by 1 of my co workers and not even asked how I was by the others.
I'm hoping in the coming weeks I can talk again without being in pain. The tip of my tongue feels raw and almost like its cut most of the time.
How long before your pain level decreased?


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Geez you have some wonderful co-workers there. I do know that some people are profoundly uncomfortable with those of us who have a serious illness and some say some really stupid things. But for everyone to ignore you seems a bit odd to me.

Everyone is different with radiation pain. I was told that a few weeks after treatment was over I'd start to feel better. It was about 3 months for me! I was ready to cash it in. But I finally started coming around and have no pain anymore. Nothing is truly normal but it's good enough. You didn't lose your sense of taste. I lost mostly "sweet" taste but can taste salt fine. Mostly things are bland.

Keep hanging in there and let time help you.


Diagnosed in March 2011. Treatment ended May 28, 2011. Back of tongue cancer with one lymph node(stage 4). Feeding tube 5 - 2011, to 9 - 2011. Some saliva and taste. Eating most foods; meat, fish and dry foods not so well. Swallowing pretty normal otherwise. Doing well now. The future? Who knows.
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Oh gosh! 3 months! How did you survive?! Were you able to speak?

Has anyone else experienced the tip of the tongue thing?


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John,

I hope what I am about to say isn't what you experience BUT most of us don't even "walk out of our tunnel" so to speak until 2 to 3 weeks post TX and that's when we finally think we will start to get better. Even then we will have a few good days followed by some bad days and I mean BAD DAYS but over time the good days win out over the bad days. Your body has been poisoned and radiated with some of us taken to the brink of death so on average our recovery from this ordeal can take every bit of 2 years. I was weak as a kitten for a good 4 months post Tx. I didn't gain a pound my first year post Tx and I was consuming at least 3000 cals a day so that tells you how much energy your body needs to heal itself. My taste and saliva came back in spurts at 4 months, 5 months, 15 months (the biggest improvement) and 24 months (the last remembered improvement). My first year was pretty dark but the 2nd year was pretty much returning everything to normal.

Please don't expect too much right now. Your body will recovery when it does. I just don't want you to get frustrated thinking that now the rad is over things will pop back to pre Tx normal. Ain't gonna happen...you will reach a new normal over the next 2 years and hopefully it will be close to your old normal.

Re your co workers. Probably scared that it could happen to them. Creaps for sure but that's the only thing I can think of.


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.
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I would echo what David has said. I am nearly three years out and I still have eating issues. Also, speech issues at times. Yes. It is frustrating at times, especially on social occasions that involve food. (and in our society what social occasion doesn't involve food). You will find your new normal, however, and things will gradually get better. It won't happen overnight, but it will happen. Your co-workers do sound like a bunch of jerks, but i agree that fear might play a large part in their behavior. My friends and associates have been great, but I do imagine that since I do look pretty good, they often think that I should have put everything all behind me. To be perfectly fair, I have to admit that I didn't know anything about oral cancer until I got it, and had no idea what the treatment and recovery was like.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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Thank you. I'm beginning to notice some differences already believe it or not. My appetite has returned. It's faint but there. And I now know what you guys mean by good days and bad days. Yesterday a bad day hit me out of no where. My tongue was in excruciating pain. Today was much better but yesterday came on so fast I was scared that it would happen again I didn't go out today.
I don't care about eating. I want to talk without being in pain and in those moments when my tongue is completely numb I have no speech problem. I didn't after surgery either. If I can talk and sing again a liquid diet is fine by me.

On a more positive note I had an angel sent to me today. I posted in the pet section on Craigslist talking about my situation and asking for help in providing supplies for my beloved hamster babies. A woman answered it today. She brought me a huge bag of bedding, food, and treats. It really eased my worries.


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I have mucositis. When that clears I don't see how I'll have any trouble eating or talking.


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Just remember that dry mouth follows the mucositis...not to be the bearer of bad news. Just to have you aware of it. That made it hard for Kevin to talk for any extended periods of time. He also has a bit of trouble singing, but it depends on the day.


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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