Recovery post radiation - Squamous Cell Carcinoma - tongue
Comments
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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.0 -
I too had SCC on the left
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.0 -
HPVSkiffin16 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
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.0 -
Diet & FoodsCastle Roads said: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.
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.0 -
Swallowing and tastedavkel said:I too had SCC on the left
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.
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.0 -
It Is What It Is....ag0176 said:HPV
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.
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.
JG0 -
DietCastle Roads said: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.
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.0 -
Acupuncture to Preserve Salivary Gland Function
Two months ago, I finished 8 weeks of treatment (daily radiation and weekly Erbitux) for Stage 4 non HPV, non smoker base of tongue cancer. At the time, it was recommended I try acupuncture to preserve my salivary gland function. The cancer center offered to pay most of the cost. Several studies have been done that show a beneficial effect, so I agreed. It appears to have worked. It also seems to have helped preserve most of my sense of taste. I still have a sore throat and am on pain killers. It was comforting to read your stories and to know I'm not alone in my impatience to feel normal. I' m grateful just to be alive and able to swallow, talk, and eat a little.
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Welcome to the CSN and H&N GroupMrsBD said:Acupuncture to Preserve Salivary Gland Function
Two months ago, I finished 8 weeks of treatment (daily radiation and weekly Erbitux) for Stage 4 non HPV, non smoker base of tongue cancer. At the time, it was recommended I try acupuncture to preserve my salivary gland function. The cancer center offered to pay most of the cost. Several studies have been done that show a beneficial effect, so I agreed. It appears to have worked. It also seems to have helped preserve most of my sense of taste. I still have a sore throat and am on pain killers. It was comforting to read your stories and to know I'm not alone in my impatience to feel normal. I' m grateful just to be alive and able to swallow, talk, and eat a little.
It would be better to start a new thread as this one is from 2012 and most wont look at or read it.
Go to the top of the posts and cilck on Start New Post: http://csn.cancer.org/node/add/forum/164 Or Click the link
Glad it helped you.
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Acupuncture for Taste RecoveryMrsBD said:Acupuncture to Preserve Salivary Gland Function
Two months ago, I finished 8 weeks of treatment (daily radiation and weekly Erbitux) for Stage 4 non HPV, non smoker base of tongue cancer. At the time, it was recommended I try acupuncture to preserve my salivary gland function. The cancer center offered to pay most of the cost. Several studies have been done that show a beneficial effect, so I agreed. It appears to have worked. It also seems to have helped preserve most of my sense of taste. I still have a sore throat and am on pain killers. It was comforting to read your stories and to know I'm not alone in my impatience to feel normal. I' m grateful just to be alive and able to swallow, talk, and eat a little.
Hi All,
I am very encouraged by the input from MrsBD.
It has been over 3 years for my diagnosis and treatment. (Details are all there in initial postings.)
I have been having a strange 3-4 month cycle of heightened sensitivity to all things oral. Speaking loud, even on phone, hurts the tongue
3 Years later I can summarise my current status as:
1) Tongue is very sensitive to heat & cold, granular foods & spices.
2) Some foods - Grams, Mong Beans, Basmati rice dessicate the oral cavity and are difficult to chew, almost unpalatable. While others - Urad lentils, Okra, Taro/Eddoe are very palatable.
3) Sour foods are not welcome, and "Hot" foods are an absolute no. The sense of sweet is very reduced, and is almoost nil by the 3rd/4th morsel.
4) Teeth develped micro-cracks, and had to undergo extended dental treatment.
5) Developed Hypothyroidism. On daily tablet of Thyronorm now. Also marginal on Diabetes.
6) Have been visiting my doc regularly every 3 months. He can not explain my tongue/taste condition, and offers any advice. Feels no signs of recurrence. No medication.
Otherwise I am physically as fit as I was before my diagnosis.
I would like to know more about the Acupuncture treatment that MrsBD underwent.
And please do share your experience.
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Looking for Similar Situations for Advice
I loved finding this, these posts are so positive and really giving me hope! You really have to be careful what you pay attention to on the internet, it can be disheartening. My fiancee and I found out halfway through my current pregnancy that he has stage IV HPV tongue cancer with lymph nodes in neck.. He's only 38 and extremely healthy.
I'm trying to find someone with a similar situation to him as I am so uncertain at the moment as to where this will end up. We got many opinions and some of them left me in teats. His tumor went from barely noticeable to three weeks later after biopsy filling his whole tongue/mouth and needing a feeding tube before treatmeny even began. He was in the hospital twice before treatment as he cound't breathe or eat it was so huge and swollen. I do not want him to have to have surgery as it will be debilatiting, total glossectomy and neck. which he of course turned down as first treatment. he is 5.5 weeks through radiation and chemo, looks terrible. He has not been able to talk at all for months between the size/swelling of the tumor and now the effects of the radiation.
It is so hard sitting by and watching him get sicker and sicker,and we have no way of knowing if anything is working or not until long after this is over. It's miserable
Wondering if anyone can shed some light on their similar experience so that I know what he's going through and can maybe hear of some success with chemoradiation with a locally advanced stage 4.. or someone who had a similar experience with a tumor .. I am trying to be positive but don't see this working and as I mentioend, the surgery that would follow would basically ruin his life.
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Start a new link
jessicaj, It would be best if you started a new link. This is an old one from 2012 and while some people will read right through it and finally find you post I think a lot won't.
This advice courtesy of wmc:
It would be better to start a new thread as this one is from 2012 and most wont look at or read it.
Go to the top of the posts and cilck on Start New Post: http://csn.cancer.org/node/add/forum/164 Or Click the link
This is a wonderful site, full of wonderful people who will be great sources of avice and comfort. Especially read the through the Superthread.
regards,
Bill
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I had stage 4 tonsil cancerjessicaj said:Looking for Similar Situations for Advice
I loved finding this, these posts are so positive and really giving me hope! You really have to be careful what you pay attention to on the internet, it can be disheartening. My fiancee and I found out halfway through my current pregnancy that he has stage IV HPV tongue cancer with lymph nodes in neck.. He's only 38 and extremely healthy.
I'm trying to find someone with a similar situation to him as I am so uncertain at the moment as to where this will end up. We got many opinions and some of them left me in teats. His tumor went from barely noticeable to three weeks later after biopsy filling his whole tongue/mouth and needing a feeding tube before treatmeny even began. He was in the hospital twice before treatment as he cound't breathe or eat it was so huge and swollen. I do not want him to have to have surgery as it will be debilatiting, total glossectomy and neck. which he of course turned down as first treatment. he is 5.5 weeks through radiation and chemo, looks terrible. He has not been able to talk at all for months between the size/swelling of the tumor and now the effects of the radiation.
It is so hard sitting by and watching him get sicker and sicker,and we have no way of knowing if anything is working or not until long after this is over. It's miserable
Wondering if anyone can shed some light on their similar experience so that I know what he's going through and can maybe hear of some success with chemoradiation with a locally advanced stage 4.. or someone who had a similar experience with a tumor .. I am trying to be positive but don't see this working and as I mentioend, the surgery that would follow would basically ruin his life.
I had stage 4 tonsil cancer that infected parts of my tongue and lymph nodes. I did chemo/radiation without surgery and so far it appears successful as I have one clean scan and about to go int for my second in a month. I am 5 months out of treatment. They essentially told me I would have chemo and radiation regardless of whether or not I had surgery because it had spread so much. So I chose to avoid surgery unless absolutely necessary. Good luck
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HPVSkiffin16 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,
JohnI have Stage IV tonsil cancer (metastized to 2 lymph nodes) and HPV positive. I've been with my husband 34 years *married 32 years) and we have been monogamous. I have no idea where this came from!!
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