Recovery post radiation - Squamous Cell Carcinoma - tongue

ag0176
ag0176 Member Posts: 16
in Head and Neck Cancer #1
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.
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Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    I didn't have surgery....but did
    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
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
    welcome to the club
    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
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    Welcome AG...
    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
    Tim6003 Member Posts: 1,514 Member
    #5
    Skiffin16 said:

    Welcome AG...
    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

    Hi AG
    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
  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #6
    A side note
    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
    ag0176 Member Posts: 16
    #7
    phrannie51 said:

    I didn't have surgery....but did
    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

    Speech after radiation
    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.
  • ag0176
    ag0176 Member Posts: 16
    #8
    Skiffin16 said:

    Welcome AG...
    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

    Thanks for your very
    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.
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #9
    some taste
    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
    ag0176 Member Posts: 16
    #10
    MarineE5 said:

    A side note
    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

    A side note
    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
  • ag0176
    ag0176 Member Posts: 16
    #11
    CivilMatt said:

    some taste
    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

    some taste
    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
    ag0176 Member Posts: 16
    #12
    longtermsurvivor said:

    welcome to the club
    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

    welcome to the club
    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
  • ag0176
    ag0176 Member Posts: 16
    #13
    Skiffin16 said:

    Welcome AG...
    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

    Welcome AG...
    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
  • ag0176
    ag0176 Member Posts: 16
    #14
    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
    Sam999 Member Posts: 319 Member
    #15
    ag0176 said:

    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

    I am 10 days out of
    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 drinkimg 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
  • Paintslinger
    Paintslinger Member Posts: 70
    #16
    ag0176 said:

    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

    taste
    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
    ag0176 Member Posts: 16
    #17
    Sam999 said:

    I am 10 days out of
    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 drinkimg 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

    Suggestions on fluids
    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.
  • ag0176
    ag0176 Member Posts: 16
    #18
    Paintslinger said:

    taste
    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

    HPV + SCC
    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
    Skiffin16 Member Posts: 8,305 Member
    #19
    ag0176 said:

    HPV + SCC
    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.

    HPV + SCC
    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
    Sam999 Member Posts: 319 Member
    #20
    Skiffin16 said:

    HPV + SCC
    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

    They can run a test on your
    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
    Skiffin16 Member Posts: 8,305 Member
    #21
    Sam999 said:

    They can run a test on your
    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

    Biopsy Tissue...
    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

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