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Recovery post radiation - Squamous Cell Carcinoma - tongue

ag0176
Posts: 14
Joined: Jul 2012

I was diagnosed with Squamous Cell Carcinoma of the tongue on Apr 19, 2012, after Excision biopsy Conducted on Apr 14. Carcinoma was identified as Stage 1, T2, confined to Left margin of the Tongue.

Underwent Brachytherapy in 5 sessions of 4Gy each, followed by 25 sessions of 2 Gy each Rapid Arc IGRT + IMRT on the Varian Machine from Apr 8 to Jun 13 2012.

I have lost most sensation of taste, and am having difficulty chewing, swallowing and am confined to taking totally bland semi-solids without any salt even.

I am interested in learning about experiences on recovery of those who underwent similar treatment.

phrannie51's picture
phrannie51
Posts: 3672
Joined: Mar 2012

have 35 radiation treatments for SCC of the naso-pharnyx, as well as 3 chemo treatments (Cisplatin), with 3 chemo treatments to go. I finish radiation about the same time you did (June 15th). I have no taste yet, and am also on a bland, mostly liquid diet. Salt would be pretty "hot" for our mouths at this juncture, I'm afraid. My mouth is way to dry to eat much even in the way of soft food, except maybe soup.

I think the "pleasure" of eating is something we're just going to have to wait for...we're healing everyday, and there is simply no way to hurry that up except to keep pumping protein into our systems, and drinking water....all the things we had to do when we were going thru treatment.

p

ag0176
Posts: 14
Joined: Jul 2012

Thanks for your prompt response. Please do keep in touch with "developments". I am now able to speak a few words without hurting. What about you?
Yes I am not able to eat any salt. My mouth was very dry too. I have started using a mouth-wash "SALEVA" which is apparently helping me, and I have started getting some saliva, although still very thick.

longtermsurvivor's picture
longtermsurvivor
Posts: 1780
Joined: Mar 2010

although you wont find many here who are as lucky as you. This board is frequented by a bunch of people who had more advanced disease to start with, and because ofnthat the average treatment here goes beyond what you have gone through. Because of your early stage, you were able to get thenfirst 20 grey of your rads by a tightly local delivery system. Only 50Gy of your rads were more generalized. Because of this, the odds of your regaining taste fully, and to have normalmsalivation is almost assured. Good for you. Having saidnthat, the symptoms you currently have are unpredictablemin duration.

I have actually been radiated twice, by way of illustration. The first time was 70Gy for BOT SCC. My sense of taste took about four years to normalize. This latest timemImreceived 68Gy for SCC of the soft palate. My tastenwas almost normal a month after rads completed. Others will be alongnshortly to regale you with their tales of recovery.

welcome

Pat

ag0176
Posts: 14
Joined: Jul 2012

Thanks for your very analytical and logical way of responding. Not many take the trouble. I do agree with you that we perhaps caught the Demon in the very beginning, and that should increase the probability and hasten near full-recovery for me.
At the least that is what I am hoping and wishing for.

Thanks

Best of luck with your treatment

Anupam Gupta

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

While I didn't have exactly the same as you...I was STGIII SCC Tonsils. I did have a load of chemo and seven weeks of that consisted of daily Rads (IMRT) at around 6000 - 7000cGy, Rads I guess...that equates to 60 - 70Gy, not sure..

Treatment ended Jun2009...at the time I lost all saliva and taste.

Mine returned slowly, weeks and months, not daily/weekly changes.

I had a good portion of both back within 6 - 12 months, but it took nearly two years to get everything back. I'm at around 100% on taste and 95% on saliva.

Here's a link to tons of good info, contributed by the many here;

SuperThread

Hang in there it gets better....you should start noticing subtle improvements before long.

Best,
John

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Base of tongue stage III - I now have full taste back I believe (though no spicy foods for me yet) and I do have to chew well and take small bites.

My last radiation was 6 months ago.

You will be good!! :)

Best,

Tim

ag0176
Posts: 14
Joined: Jul 2012

Thanks for your very encouraging experience report. I hope I am as lucky as you are in recovering taste and saliva.

Let me explore the link and get back to you.
Thanks once again.

ag0176
Posts: 14
Joined: Jul 2012

Vow, your recovery gives me hope and confidence. Thanks for the very encouraging post, and also for the useful link.

Best of luck

Anupam Gupta

MarineE5
Posts: 748
Joined: Dec 2005

AG and P,

Just a little reminder. After we finish our last treatments, we continue to "Cook" from the radiation treatments and the side affects are worse at the 1st and 2nd weeks out. We start to recover anywhere from 4-8 weeks out. Things will slowly get better.

We also have some swallowing issues due to our passageway getting narrow from the throat swelling inside, again from the radiation.

My Best to You and Everyone Here

ag0176
Posts: 14
Joined: Jul 2012

Thanks for your very encouraging post.
Somehow I feel some recovery has begun within 3 weeks. I hope I get to 95% within a short span, 6-8 months.

Thanks once again.

Anupam Gupta

CivilMatt's picture
CivilMatt
Posts: 2907
Joined: May 2012

Hi ag0176,

I had a section of lower left tongue and one (3 cm) lymph node excised from my neck (left side), then to guarantee membership in this club I elected for 35 radiation treatments with a side order of Erbitux. Even though I had a PEG, I drank 1 meal a day and never quit swallowing.

Taste buds split during week three of radiation treatments; they didn’t even leave a note or anything telling me when they would return. Now, at 14 weeks post there are truly signs of life. I don’t want to jinx this phenomenon, but I am starting to taste and not think everything to eat is disgusting. Today, I actually ate 4 little broiled shrimp, a few bites of ham and half an ear of corn on the cob and it wasn’t too bad. I was tempted to eat more corn but lack of spit stopped that. It took two glasses of water to eat today but I can live with that.

I truly thought my days of pigging out; or a more refined way of saying it, enjoying a meal were over. Now, I have to adjust my attitude, give myself a pat on the back and be happy for positive progress.

Your condition sounds pretty good, keep up the recovery.

Best,

Matt

ag0176
Posts: 14
Joined: Jul 2012

Something tells me you will have a near full recovery in not too long a time. Just keep on reminding yourself that this WILL HAPPEN.
I am an engineer, but I do believe in the immense power of our body to heal itself, given that our mind keeps a full control over it. And in that ATTITUDE helps.
So just keep your hope level very high.

Thanks for posting a response.

ag0176
Posts: 14
Joined: Jul 2012

I am having strange tastes.
Even plain water tastes acidic and offensive, and hurts. To make it palatable I have to either add
1)a pinch of salt & bit of baking Soda, or,
2) a teaspoon full of flavored sugar syrup.
Also I find that water even with above additions at room temperature hurts, and must be heated to about 5F above room temp to be acceptable.

I'd like to learn about your experiences on this. Also, whether normal taste would return, and how soon.

Thanks

Sam999
Posts: 305
Joined: Mar 2012

I am 10 days out of radiation and tastewise things have not chnged. For me taste buds were gone in third week. Water taste bad in the beginning but i kept drink**** it so now seems okay.

For most people milk seems to work the best. You can use any milk. I use watered down yougurt ( butter milk).

This is a tough journey, we all will support each other on the way.

Sam

ag0176
Posts: 14
Joined: Jul 2012

Sam,

Thanks for your suggestion regarding Milk & watered down yogurt. In India, we regularly use milked down yogurt, using milk for thinning yogurt in place of water. I shall try both, and even try a new cocktail of both milk and water added to yogurt.

My Carcinoma had originated from taste buds area itself, so maybe I am in for a longer period of recovery.

The most painful period was 4~6 weeks AFTER last radiation. So hang in there. I tried using 2 lollies:
1) Transmucosal Oral Fentanyl Citrate - for general pain relief
2) Lidocaine - for local naesthesia - to help take in any food

Both were really helpful.

I also used CAPHOSOL mouth wash, during the period when the oral ulcers were at the peak. It is expensive, but provides relief. Maybe not value for money, but sure helpful.

The most helpful were:
1) Gargles with a Glass of Luke warm Water with a pinch of Salt + half teaspoon of Baking Soda - could even swallow it in small gulps
2) 4mg Dexamehasone tablet crushed and powdered and mixed with Boro-Glycerine applied with a cotton swab aver the whole tongue, upper and lower palates, and inside of both lips

Hope this all is helpful.

Paintslinger's picture
Paintslinger
Posts: 70
Joined: Jun 2012

AG,
Relax, what you're experiencing is perfectly normal given what you've just been through (your treatment, etc.). I was diagnosed with HPV+SCC of the base of the tongue. Midway through my 7 week treatment (which also included chemo: 3 rounds of cis-platin), EVERYTHING tasted like wet cardboard. I'm about 7 months post-treatment and everything (with regard to taste) is coming back except the "sweet": completely gone. I'm hoping that it comes back.
I was commenting on another thread that it is amazing how different many foods taste if you are unable to register the "sweet" aspect of their flavor. Very strange. Take heart that it will get better for you, it just takes time for your body to heal. I've got some advice (which I was also discussing on a different thread earlier): Find a buffet-style restaurant and sample different things to see what foods are actually palatable for you.
Water tasted weird to me as well, but it didn't burn. You might want to ask one of your doctors about that.
Take care and good luck,
Paul

ag0176
Posts: 14
Joined: Jul 2012

How could you have contracted HPV?

I dont smoke, drink rarely, do not have a chewing habit. Infact, I have a fetish for oral hygiene, and have used a wide variety of oral devices & washes to keep my mouth really clean.

And even then I get SDquamous Cell carcinoma of the tongue? What could be the possible triggers? Could it be HPV, but from where could I contract it?

Your experience could help me solve the riddle, and take precautions for future.

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

WOW....

You need to bone up concerning HPV and H&N Cancer....

Right now it's close to the leading cause of H&N Cancer. It's to the point they figure in the next few years it's going to overtake tobacco derived H&N Cancer.

There have also been articles recently stating that nearly 80% of everyone under 40 have had HPV one time or another during their life.

There are no definitive answers on how it's contracted (that I've seen)...though the thought or at least one thought is through oral sex.

I believe that's why they feel most younger people have contracted it. Different views, attitudes and acceptance of sexaul practices than an older generation.

Plus they aren't sure (again from my understanding) of how long it can lie in the body dormant or what exactly triggers it to develope into cancer.

Myself for instance...if it were indeed from sexaul behaviors. I nor my wife have been with anyone else for over 20+ years.

I also have never used tobacco, don't drink that much and other than having cancer was in pretty good health.

My STGIII Tonsil Cancer was HPV+....

So it would have had to lie dormant for 20 some years.

Of course stress, etc...can lead to a compromised immune system, and that'ss the thought of when it takes hold.

Our bodies are exposed to all kinds of deadly disease and germs routinely. Usually we are healthy and have strong immune systems, flushing the bad stuff out...sometimes we don't.

Best,
John

Sam999
Posts: 305
Joined: Mar 2012

They can run a test on your existing slides for diagonisis and tell if it was HPV positive or not. They ran it for me andw it turned out HPV negative. But this is a very important information that you should find out.

Sam

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Yes they can test the tissues from biopsy..not sure that it really changes anything though.

It is what it is, and treatment will more than likley be the same regardless. Other than studies suggest that HPV derived cancers tend to respond well to treatment.

More than likely the HPV that caused (or might have caused) the cancer will be cleared as a result of the treatment.

JG

ag0176
Posts: 14
Joined: Jul 2012

I wonder how can I rule out HPV at this point of time, and what added benefit or security does it provide against recurrence.

I only have slides of me excision Biopsy, and all the path labs that I contacted today here in New Delhi were unable to check those for HPV. I wonder if there are any labs in US which could use these slides and check for HPV. I'd appreciate any help on that.

I am at a total loss to comprehend as to how I could have contracted HPV, if at all. I have been monogamous all my life, and so is the case with my spouse, and we have never indulged in any unnatural sex.

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Rule it out as for what, originally contracting it....what does it matter.

As for recurrence are you talking HPV or cancer...either way, I don't think there are any measures you can take to assure a non-recurrence of either.

Also concerning original contraction....I presume you are saying that both you and your wife never had sexual relations with any other partners period....?

But, there is no evidense that HPV is only or definitively only contracted sexaully...they don't have anything that I'm aware of on how it's contracted specifically and any single source.

As for "unnatural sex"....there is thought that just kissing could contribute to spread of HPV.

Personally, I wouldn't dwell on it...it is what it is...or was.

Your priorities should be recovery and minimalization of future risks..in my opinion.

JG

Castle Roads
Posts: 1
Joined: Jul 2012

Hi There,

I finished 36 radiation (IMRT)treatments and 7 chemo sessions for my base of tongue cancer
and one lymph node on Feb 28 this year. Was a hell of a ride but got through well by forcing myself to eat no matter what the pain. Fried eggs, tapioca, mashed potatoes & gravy, fresh fruit smoothies with yogurt & protein powder (and Superfood.. see below ) all got down eventually. Took a long time to eat a meal and had to keep re-warming the plate but just stuck with small slow bits. I supplemented with the stomach tube. I too lost taste but about 75% has returned 4 months later. You just hunker down and do one day at a time and don't dwell on the blandness. Concentrate on the swallowing of food and exercise the jaw regular. That for me was the priority. Sometimes the pain made it difficult and almost impossible but I used to think of the injured soldiers in Iraq and what they must go through and that gave me the motivation to put it down! Don't feel sorry or helpless. Take it on and push ahead, but one day at a time. Don't dwell on the future.
I am gennerally a healthy eater and in good shape so that helped a lot, but I swear by a supplement that I used all through treatment and not once did my blood counts drop. Dr. Shulze's Super Food Powder. I used it prior to treatment and still use it every day.We all concluded the Superfood was a huge part of keeping me extra healthy through treatment. Minimal Mucositis, no mouth sores, and my neck healed in no time. Try it for a month and don't eat junk food.Exercise and keep forcing food down. You have to replenish your system and give it the good food and nutrients so it can heal.

Keep at it. It only gets better.

ag0176
Posts: 14
Joined: Jul 2012

I appreciate your detailed description and advice.

Luckily I did not have to go through Chemo. Unfortunately, my mouth ulcers were very intense and painful, and Morphine and its derivatives caused severe nausea. So I had to make do with Tromadol & Diclofenac.

Due to the extreme sensitivity of tongue's ulcers, even plain water caused shooting spikes of pain. Anything having slightest granularity was an absolute no-no. This restricted my total food intake and I lost nearly 13 kilos of weight. So much so that I had to be on IVs for 5 days as a precaution.
Even now, after almost a month of the last radiation I have a very minimal sense of taste, everything tastes a bit sour. Soda-BiCarb helps me gulp down other liquids. And everything has to be a bit warmer than room temperature.

I'll try to locate Dr Shulze's Super Food Powder as suggested by you.

ag0176
Posts: 14
Joined: Jul 2012

My daughter contrived a new recipe of a "SOUP" which I find very palatable, and full of balanced nutrition. It revived me. Here is the recipe:

The "soup" is made of:
Vegetables saute'd in butter - Broccoli, Cauliflower, Carrots, Potato, Peas,
Broth made of - Oats, Cream, Processed Cheese
All mixed together, cooked and Pureed in a blender.

I am Vegetarian, so no chicken or eggs. But one could easily add Egg drop, or even Chicken stock.

davkel's picture
davkel
Posts: 20
Joined: Apr 2012

I too had SCC on the left side (stage 4), my taste went away when the radiation and chemo started. My treatments were finished Feb 10, 2012. I already have my taste back but still can't swallow. Make sure you try to swallow something each and every day to keep it working. I didn't and am paying the price for that now. Things taste great but I can't get any solids down and only limited amount of liquid. Thrush in my mouth seems to be interfering with my swallowing. Everything else in my throat and mouth feels fine...no pain, just can't get anything done my esophagus. The Doc's say time will solve this but i'm having one helluva time being patient. Hang in there and good luck and God bless.

ag0176
Posts: 14
Joined: Jul 2012

My last Radiation was on 13th of June.
I am not able to manipulate food in my mouth by my tongue. Therefore no solids, or semi-solids requiring chewing. To prevent weakening of Jaw muscles I am doing exercises. But, still haven't got to the stage of swallowing. Hopefully soon I shall be able to chew.

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