Taste Buds - when will they return!?

24

Comments

  • mentn
    mentn Member Posts: 4
    I had SCC right tonsil 30
    I had SCC right tonsil 30 IMRT with Radiation at MD Anderson. Lost taste after about 20 treatments took about six weeks for taste to start coming back> Sweets were the last tast
    to come back at about 18 months I finally tasted Chocolate still not the same but bearable. Chinese food got me through
    the hard times especially the spicy. Another thing right after treatment that was great were
    smoothies with extra protien. Sugar free chewing gum helped to keep my mouth moist and
    provided a good flavor. I am now 3 years out and having a great time. I went from 210 to 185
    durring treatment but am now back to 215 I was a diet I will never forget/
  • grahammj13
    grahammj13 Member Posts: 1
    mentn said:

    I had SCC right tonsil 30
    I had SCC right tonsil 30 IMRT with Radiation at MD Anderson. Lost taste after about 20 treatments took about six weeks for taste to start coming back> Sweets were the last tast
    to come back at about 18 months I finally tasted Chocolate still not the same but bearable. Chinese food got me through
    the hard times especially the spicy. Another thing right after treatment that was great were
    smoothies with extra protien. Sugar free chewing gum helped to keep my mouth moist and
    provided a good flavor. I am now 3 years out and having a great time. I went from 210 to 185
    durring treatment but am now back to 215 I was a diet I will never forget/

    just wondering
    I had scc in my left tonsil and had 30 imrt treatments. I went from 164lbs to 125lbs. I have been done with treatment for just over two months and am still having a hard time eating most solid food. At this point I have resorted to high calorie protein drink mix. I guess the worst part is no saliva to keep throat moist and to aid in swallowing, and this is really affecting my quality of life. Does saliva and taste come back? And to what extent have you experienced this recovery. I know everyone is different but at this point any news in this area wll be appreciated.

    mjg
  • SASH
    SASH Member Posts: 421 Member

    just wondering
    I had scc in my left tonsil and had 30 imrt treatments. I went from 164lbs to 125lbs. I have been done with treatment for just over two months and am still having a hard time eating most solid food. At this point I have resorted to high calorie protein drink mix. I guess the worst part is no saliva to keep throat moist and to aid in swallowing, and this is really affecting my quality of life. Does saliva and taste come back? And to what extent have you experienced this recovery. I know everyone is different but at this point any news in this area wll be appreciated.

    mjg

    Taste and Saliva
    Taste should be back eventually, saliva is individual and how damaged the salivary glands got with the radiation.

    I still have very limited saliva so I am constantly with a water bottle to help with the dry mouth and eating.
  • JGE
    JGE Member Posts: 51

    just wondering
    I had scc in my left tonsil and had 30 imrt treatments. I went from 164lbs to 125lbs. I have been done with treatment for just over two months and am still having a hard time eating most solid food. At this point I have resorted to high calorie protein drink mix. I guess the worst part is no saliva to keep throat moist and to aid in swallowing, and this is really affecting my quality of life. Does saliva and taste come back? And to what extent have you experienced this recovery. I know everyone is different but at this point any news in this area wll be appreciated.

    mjg

    Taste / Saliva
    Long time lurker, 1st time poster. 41 YOA, Left Base of Tongue, 2 lymph nodes, 30 IMRT, 3 doses of Chemo (high doses of each) Last treatment 11/15/2009.

    The taste will get better. At 4 mos I would say I have about 75-80%. At 2 mos I had about 40-45% and I thought i would never be able to live that way. At the end of treatment, I had no taste at all. I will say it again, it will get better. One friend at 8 mos is about 85%. His friend at 1 yr + says he is almost 100% but likes different things than he did before. Also, your saliva used to "rinse" the flavors around your mouth and the enzymes in your spit started breaking down the food right away which helped bring out the flavors. We no longer have that.

    As far as saliva goes, this definitely varies much more than the taste thing. First of all it depends on the type of radiation someone gets. IMRT allows the doctor to "aim" the radiation much better than other types of radiation. Years ago they just nuked everything all around the target area. Besides IMRT, it depends how much effort the radiologist takes to try and spare you some salivary gland function. They are trying to balance between insuring they get all the cancer and leaving you with some spit for quality of life.

    For me, my saliva has gotten better than it was 2 mos ago. I would say that I have gone from about 25% to about 35% even tho the radiologist said it was damaged and wouldnt get any better. The ENT on the other hand said it would get better but would take a year. A fellow I have come to know that is beyond 1 year says that his did get better as time went on and is actually "pretty good". Another guy I know at 8 mos seems to be worse than mine. Really varies.

    I can tell you this. A couple months ago I didnt think I would ever be able to live with the sore throat, the dry mouth and especially the lack of taste! All of these things have gotten dramatically better and the taste is tolerable for sure even if it doesnt get any better (which I hope it does). The sore throat is all but gone unless I eat a big dry meal. The saliva is probably the biggest issue that will most likely remain for the rest of my/our life.

    Milk is better than water with food because it is thicker
    Biotene toothpaste and mouthwash is good (no "foaming agents")
    Biotene GEL gets me thru the night without water
    Lots of sauces and condiments with food
    Less bread and crackers
    Some say Zinc supplements help with taste buds
    Less talking helps keep the moisture in your mouth
    Breath thru your nose as much as possible
    Gum with Xylitol helps when excercising or breathing heavily
    Humidifier in your room every night
    Chap stick for dry lips due to dry mouth

    Hope this helps!
  • Bobert
    Bobert Member Posts: 4
    JGE said:

    Taste / Saliva
    Long time lurker, 1st time poster. 41 YOA, Left Base of Tongue, 2 lymph nodes, 30 IMRT, 3 doses of Chemo (high doses of each) Last treatment 11/15/2009.

    The taste will get better. At 4 mos I would say I have about 75-80%. At 2 mos I had about 40-45% and I thought i would never be able to live that way. At the end of treatment, I had no taste at all. I will say it again, it will get better. One friend at 8 mos is about 85%. His friend at 1 yr + says he is almost 100% but likes different things than he did before. Also, your saliva used to "rinse" the flavors around your mouth and the enzymes in your spit started breaking down the food right away which helped bring out the flavors. We no longer have that.

    As far as saliva goes, this definitely varies much more than the taste thing. First of all it depends on the type of radiation someone gets. IMRT allows the doctor to "aim" the radiation much better than other types of radiation. Years ago they just nuked everything all around the target area. Besides IMRT, it depends how much effort the radiologist takes to try and spare you some salivary gland function. They are trying to balance between insuring they get all the cancer and leaving you with some spit for quality of life.

    For me, my saliva has gotten better than it was 2 mos ago. I would say that I have gone from about 25% to about 35% even tho the radiologist said it was damaged and wouldnt get any better. The ENT on the other hand said it would get better but would take a year. A fellow I have come to know that is beyond 1 year says that his did get better as time went on and is actually "pretty good". Another guy I know at 8 mos seems to be worse than mine. Really varies.

    I can tell you this. A couple months ago I didnt think I would ever be able to live with the sore throat, the dry mouth and especially the lack of taste! All of these things have gotten dramatically better and the taste is tolerable for sure even if it doesnt get any better (which I hope it does). The sore throat is all but gone unless I eat a big dry meal. The saliva is probably the biggest issue that will most likely remain for the rest of my/our life.

    Milk is better than water with food because it is thicker
    Biotene toothpaste and mouthwash is good (no "foaming agents")
    Biotene GEL gets me thru the night without water
    Lots of sauces and condiments with food
    Less bread and crackers
    Some say Zinc supplements help with taste buds
    Less talking helps keep the moisture in your mouth
    Breath thru your nose as much as possible
    Gum with Xylitol helps when excercising or breathing heavily
    Humidifier in your room every night
    Chap stick for dry lips due to dry mouth

    Hope this helps!

    taste Buds
    I just finished 7 weeks of rad. and Chemo. for SCC tonsil & neck. 8 days ago. My saliva productions isn't bad at this point. The lack of taste is killing me, worst thing you could do to a Italian guy. I find myself watching the food network and planning what I'm going to eat once food doesn't taste bad. I even e-mailed Jack in the box to see if I could find the old secret sauce from back in the day, boy do I need to get a life. Gald to be returning to work next week. Sounds like 4-6 weeks is the best case, hope so drinking nothing but ensure, milk, apple juice & gatoraid is getting old. I went from 247 lbs to 203 lbs at 6'4" I look way to skinny. Gald to be done, but this sucks.
  • SASH
    SASH Member Posts: 421 Member
    Bobert said:

    taste Buds
    I just finished 7 weeks of rad. and Chemo. for SCC tonsil & neck. 8 days ago. My saliva productions isn't bad at this point. The lack of taste is killing me, worst thing you could do to a Italian guy. I find myself watching the food network and planning what I'm going to eat once food doesn't taste bad. I even e-mailed Jack in the box to see if I could find the old secret sauce from back in the day, boy do I need to get a life. Gald to be returning to work next week. Sounds like 4-6 weeks is the best case, hope so drinking nothing but ensure, milk, apple juice & gatoraid is getting old. I went from 247 lbs to 203 lbs at 6'4" I look way to skinny. Gald to be done, but this sucks.

    FoodTV
    Bobert,

    I too watched FoodTV and made a list of all the foods I wanted to eat once I was able and even had a never ending grocery list of foods I wanted again.

    While you have lost weight, that is nothing compared to me. I went from 230 to 135 during treatments. I am just under 6'2" and one of my doctors said it looked like I just escaped from a concentration camp.

    It does get better as I now eat almost anything I want. I would suggest talking to a speech pathologist who specializes in swallowing so they can make sure the foods you want to eat will flow properly down your esophagus. I once in a while I still get food caught in my throat and have to manually remove the food. This can be very scary not only for yourself, but also for others around you if you start having problems breathing.
  • Justalady60
    Justalady60 Member Posts: 3
    taste
    I guess every case is different and every patient different, I do NOT have saliva or taste other than salty or sour. My smell is still very accute though. I wish I did not have any taste because then it may be easier. Without saliva however, you do not have the enzymes to release the flavor from food. I no longer have a feeding tube after over a year and half, but am now drinking Scandishakes! That is what keeps me alive!
  • RoseEm
    RoseEm Member Posts: 32

    taste
    I guess every case is different and every patient different, I do NOT have saliva or taste other than salty or sour. My smell is still very accute though. I wish I did not have any taste because then it may be easier. Without saliva however, you do not have the enzymes to release the flavor from food. I no longer have a feeding tube after over a year and half, but am now drinking Scandishakes! That is what keeps me alive!

    Mine changed - it's been 15 months since last rad
    My taste hasn't come back, but I think the combo of my radiation and chemo just permanently fried my tongue. Things I used to love - especially melons, strawberries are just not close to tasting the same. I also pretty much exist on Scandishakes, Ensure - but do enjoy some "real" foods. I'm a little different, though, in that there was a lot of damage to throat muscles, epiglottis (sp?), etc. I have many "forbidden" foods, which makes it slim pickings. "Eating" to me is the same as "time to take your medicine." I've gotten used to it. Kind of like giving up smoking or caffeine...tough for a while, then it just becomes my "new normal."

    I know lots of people whose taste came back completely within a couple of years.
  • wboaz
    wboaz Member Posts: 48
    RoseEm said:

    Mine changed - it's been 15 months since last rad
    My taste hasn't come back, but I think the combo of my radiation and chemo just permanently fried my tongue. Things I used to love - especially melons, strawberries are just not close to tasting the same. I also pretty much exist on Scandishakes, Ensure - but do enjoy some "real" foods. I'm a little different, though, in that there was a lot of damage to throat muscles, epiglottis (sp?), etc. I have many "forbidden" foods, which makes it slim pickings. "Eating" to me is the same as "time to take your medicine." I've gotten used to it. Kind of like giving up smoking or caffeine...tough for a while, then it just becomes my "new normal."

    I know lots of people whose taste came back completely within a couple of years.

    Taste is a constantly changing thing
    I am over 3 years past treatment and my taste is either still changing or my brain is compensating. Sweet was the most affected taste so it has been the slowest coming back. I have learned to accept what tastes have come back and adjust. Like you strawberries haven't come back to sweet. They were like lemons at first and chocolate was very bitter. You just have to be patient and keep trying things again after a few more months.
  • CherokeeChick
    CherokeeChick Member Posts: 1
    taste buds
    As I was reading down thru these posts I actually smiled to know that there are other cancer patients out there that are goin thru EXCATLY what my dad has. he was diagnosed with squamous cell cancer (tongue cancer) december 4,2009. My dad being 51 has NEVER NEVER NEVER been sick in his life, he quit smoking 30+ years ago and quit chewing april of 2009,come may 2009 he had a sore throat. finally talked his stubborn butt into goin to the family doctor in august,she diagnosed him with strep throat from august-october,when i went to the same dr in october for my bronchitis i told her he was not doin better, that is when she "referred" him to a head/neck specialist. That is when the CTscan showed a 3cm mass on the left side of his tongue..toward the back. He got a port and a feeding tube late December. Come January 25th he had his first Chemo and radiation and he went 5 days a week for radiation and had 3 chemo treatments. He has lost his taste buds and just decided he dont want to eat within the last week. He has lost about 20 lbs since December. His radiation dr felt his throat a few weeks ago and says the mass is SHRINKING (THANK GOD) but still wants him to have a few more radiation. as of april 12th we should be completely done!!! I was just curious as to what he should do about taste buds? and i am prayin for the all the cancer patients on here that i have read about. Cancer is the most scariest thing in the world and even my dad said he wouldnt wish it upon his worst enemy!!
    take care and i hope to hear more from everyone on here!!!
  • thegirlfriend
    thegirlfriend Member Posts: 142

    taste buds
    As I was reading down thru these posts I actually smiled to know that there are other cancer patients out there that are goin thru EXCATLY what my dad has. he was diagnosed with squamous cell cancer (tongue cancer) december 4,2009. My dad being 51 has NEVER NEVER NEVER been sick in his life, he quit smoking 30+ years ago and quit chewing april of 2009,come may 2009 he had a sore throat. finally talked his stubborn butt into goin to the family doctor in august,she diagnosed him with strep throat from august-october,when i went to the same dr in october for my bronchitis i told her he was not doin better, that is when she "referred" him to a head/neck specialist. That is when the CTscan showed a 3cm mass on the left side of his tongue..toward the back. He got a port and a feeding tube late December. Come January 25th he had his first Chemo and radiation and he went 5 days a week for radiation and had 3 chemo treatments. He has lost his taste buds and just decided he dont want to eat within the last week. He has lost about 20 lbs since December. His radiation dr felt his throat a few weeks ago and says the mass is SHRINKING (THANK GOD) but still wants him to have a few more radiation. as of april 12th we should be completely done!!! I was just curious as to what he should do about taste buds? and i am prayin for the all the cancer patients on here that i have read about. Cancer is the most scariest thing in the world and even my dad said he wouldnt wish it upon his worst enemy!!
    take care and i hope to hear more from everyone on here!!!

    taste
    Im sure your dad feels that anything he puts in his mouth is similiar in feeling to
    snacking on cement, cardboard, and other such things. My boyfriend has been out of treatment, lets see, on Friday it will be 22 weeks. He has a little bit of taste, but within 30 seconds of chewing or trying to suck on the flavor of something, it turns into, cardboard or sand in texture.
    Its amazing what the radiation zaps do to a tumor. I remember his tumor getting treated and within 3 days, it had shrunk by 1/3!! So yes it is the best we have, but it also kills alot of taste ability and saliva. For many as you can read, it returns almost all the way or all the way. Everyone is different. Your dad MUST keep up whatever he must, to keep getting nutrients. If he loses too much weight they may stick him in the hospital. Dehydration is a biggie. After fat loss, then you lose muscle mass. But I know he just doesnt feel like eating because the treatment has just wrecked the joy of eating as well as the ability to properly eat. This is temporary as I am being reassured on this board.

    These last 2 weeks may be the hardest on your dad as they are for many. Tell him to look for the light at the end of this tunnel. Its there. Then he can concentrate on recovery.

    best of luck cherokee
  • dennis318
    dennis318 Member Posts: 349 Member
    SASH said:

    FoodTV
    Bobert,

    I too watched FoodTV and made a list of all the foods I wanted to eat once I was able and even had a never ending grocery list of foods I wanted again.

    While you have lost weight, that is nothing compared to me. I went from 230 to 135 during treatments. I am just under 6'2" and one of my doctors said it looked like I just escaped from a concentration camp.

    It does get better as I now eat almost anything I want. I would suggest talking to a speech pathologist who specializes in swallowing so they can make sure the foods you want to eat will flow properly down your esophagus. I once in a while I still get food caught in my throat and have to manually remove the food. This can be very scary not only for yourself, but also for others around you if you start having problems breathing.

    same boat
    i gained weight before my treatment and started at 202-lbs...i weighed in yesterday at 150lb, my taste buds have started to come back, but have to revert to hydrocodones to eat, my throat cancer was hit with 7 weeks of radiation and 3 chemos, i have managed to eat as much and rev up the program, I'm tired of trying...now, trying to cut down on drugs, they provided a crutch, but increased to help me, i never took anytime off, my throat was hit hard with radiation, i come here for stress relief and mental reliess, i come home drained, tired, depressed, i quit taking the drugs, sat in the front lawn after mowing my lawn and cried, Dr. tells me 4 weeks out, what am I expecting here, the same old raspy voice, the smell the comes from the phlem and erupts throught out the day, the soremess, does it stop? having to carry paper cup in the car so when i spit foam, i don't gagg,trash canes throug out the house, i have to spit in, we where all stricken in a different way, but i can't get a real answer. it could take months?, Years? I wish anyone a the best when you have a postitve, and a sign of hope, but whens it going to end, when can i have my voice back???, PLEASE
  • dennis318
    dennis318 Member Posts: 349 Member

    taste
    Im sure your dad feels that anything he puts in his mouth is similiar in feeling to
    snacking on cement, cardboard, and other such things. My boyfriend has been out of treatment, lets see, on Friday it will be 22 weeks. He has a little bit of taste, but within 30 seconds of chewing or trying to suck on the flavor of something, it turns into, cardboard or sand in texture.
    Its amazing what the radiation zaps do to a tumor. I remember his tumor getting treated and within 3 days, it had shrunk by 1/3!! So yes it is the best we have, but it also kills alot of taste ability and saliva. For many as you can read, it returns almost all the way or all the way. Everyone is different. Your dad MUST keep up whatever he must, to keep getting nutrients. If he loses too much weight they may stick him in the hospital. Dehydration is a biggie. After fat loss, then you lose muscle mass. But I know he just doesnt feel like eating because the treatment has just wrecked the joy of eating as well as the ability to properly eat. This is temporary as I am being reassured on this board.

    These last 2 weeks may be the hardest on your dad as they are for many. Tell him to look for the light at the end of this tunnel. Its there. Then he can concentrate on recovery.

    best of luck cherokee

    hey girlfriend
    i hit bottom and lost my muscle tone 202 to 150, the drs continues to tell me eat 5 meals a day, I'm having trouble with 3, throat hurts, on hydrocones, now trying to back off, impossible, come home exhausted from work, sit down cry, I have no voice, a whisper, and ears sore, get up and try to pull yourself together. Does this end, i can taste, but no voice, everyone tells me patience, radiation ended january 26th, the doctor i saw last week states 4 mores weeks out due to the harsness of chemo, do they now or is this a i hope is gets better, lets give it 4 more weeks, does anyone no???? the smell from the phlem burping up, or is it meds, no answers, just guesses, anyone at all, give me something to hang too. thanks. Dennis
  • Scambuster
    Scambuster Member Posts: 973
    dennis318 said:

    hey girlfriend
    i hit bottom and lost my muscle tone 202 to 150, the drs continues to tell me eat 5 meals a day, I'm having trouble with 3, throat hurts, on hydrocones, now trying to back off, impossible, come home exhausted from work, sit down cry, I have no voice, a whisper, and ears sore, get up and try to pull yourself together. Does this end, i can taste, but no voice, everyone tells me patience, radiation ended january 26th, the doctor i saw last week states 4 mores weeks out due to the harsness of chemo, do they now or is this a i hope is gets better, lets give it 4 more weeks, does anyone no???? the smell from the phlem burping up, or is it meds, no answers, just guesses, anyone at all, give me something to hang too. thanks. Dennis

    Docs Opinion
    Hi Again Dennis.

    I was sort of where you are and know it is not a good place. While I haven't a conclusive nor definite answer to your questions, I can share my story.

    Post treatment about 2 weeks out, I was still living through my PEG and in bad shape. What turned me around was getting prescribed new medications. I was on Morphine and Vicodin for the pain, couldn't really eat, no taste, heavy mucous and very very depressed. I could see no end to the suffering and it disturbed me to the core. I couldn't work. I couldn't even leave the apartment.

    I was actually admitted back into hospital for about a week. The Onco Docs and nurses who knew me well almost shat themselves when they saw me and the condition I was in. They sent for the shrink. He was nice guy and quickly established I was very depressed. No surprise in hindsight though. At the time I had no idea.

    They put me on a mood stabilizer, an antidepressant, and an anti-anxiety pill + Lyrica which is mainly for pain. I had my first night sleep in nearly 4 months. I immediately settled down and felt better and saw a glimmer at the end of a very long tunnel. It still took a while before I ate and I still struggle with food, but when the other things in life start to improve around you, then you place less emphasis on the crappy things so in a way, while everything now is probably crappy, you will start to identify some things improve.

    That could be your energy, your sleep, the pain, the reduced mucus, your voice, your appetite or just walking out into a sunny morning and enjoying a sit in the garden.

    My good periods at the start were going to Starbucks with my Laptop and reading a book and slowly slurping down a Hazelnut Toffee Shake. Not the best health wise but it was something I could get down and gave me some calories. i downloaded and read Lance Armstrong's book called "It's not about the bike". I recommend it. I looked FWD to my couple of hours there with a 15 minute walk either to and from (I actually detest Starbucks but they have nice comfortable chairs and WiFi). I noticed each week that I moved a bit easier and stayed longer, and even ordered a second beverage.

    I must emphasize how the importance of getting good sleep was for my recovery. Most of the 4 pills I took each night helped the sleep. I still don't know how I went from Morphine and Vicodin to these other meds without any need for pain killers. I still take the meds but have reduced the doses and am slowly weaning off them all.

    I finished treatment early october. By early Feb i was back at work full time and now I feel great. I swim laps and do light work outs and have great energy. I take a bunch or supplements and watch my diet. While I don't enjoy food in the same way, i find things that suit me and get along fine. I was also about 210lbs and now am a trim 165. Not much gain but I feel fine and now will work on rebuilding the lost muscle.

    i also told myself over and over every day ("I am getting better..I am getting better....I am getting better...") Your mind need to be convinced and it can help your body take on the signal.

    You will get through this Dennis, Have faith and I hate to say it, but patience. Work on the small things but please talk to your Docs about feeling so low as they can probably help you out.

    Hang in there.
    Scambuster
  • thegirlfriend
    thegirlfriend Member Posts: 142

    Docs Opinion
    Hi Again Dennis.

    I was sort of where you are and know it is not a good place. While I haven't a conclusive nor definite answer to your questions, I can share my story.

    Post treatment about 2 weeks out, I was still living through my PEG and in bad shape. What turned me around was getting prescribed new medications. I was on Morphine and Vicodin for the pain, couldn't really eat, no taste, heavy mucous and very very depressed. I could see no end to the suffering and it disturbed me to the core. I couldn't work. I couldn't even leave the apartment.

    I was actually admitted back into hospital for about a week. The Onco Docs and nurses who knew me well almost shat themselves when they saw me and the condition I was in. They sent for the shrink. He was nice guy and quickly established I was very depressed. No surprise in hindsight though. At the time I had no idea.

    They put me on a mood stabilizer, an antidepressant, and an anti-anxiety pill + Lyrica which is mainly for pain. I had my first night sleep in nearly 4 months. I immediately settled down and felt better and saw a glimmer at the end of a very long tunnel. It still took a while before I ate and I still struggle with food, but when the other things in life start to improve around you, then you place less emphasis on the crappy things so in a way, while everything now is probably crappy, you will start to identify some things improve.

    That could be your energy, your sleep, the pain, the reduced mucus, your voice, your appetite or just walking out into a sunny morning and enjoying a sit in the garden.

    My good periods at the start were going to Starbucks with my Laptop and reading a book and slowly slurping down a Hazelnut Toffee Shake. Not the best health wise but it was something I could get down and gave me some calories. i downloaded and read Lance Armstrong's book called "It's not about the bike". I recommend it. I looked FWD to my couple of hours there with a 15 minute walk either to and from (I actually detest Starbucks but they have nice comfortable chairs and WiFi). I noticed each week that I moved a bit easier and stayed longer, and even ordered a second beverage.

    I must emphasize how the importance of getting good sleep was for my recovery. Most of the 4 pills I took each night helped the sleep. I still don't know how I went from Morphine and Vicodin to these other meds without any need for pain killers. I still take the meds but have reduced the doses and am slowly weaning off them all.

    I finished treatment early october. By early Feb i was back at work full time and now I feel great. I swim laps and do light work outs and have great energy. I take a bunch or supplements and watch my diet. While I don't enjoy food in the same way, i find things that suit me and get along fine. I was also about 210lbs and now am a trim 165. Not much gain but I feel fine and now will work on rebuilding the lost muscle.

    i also told myself over and over every day ("I am getting better..I am getting better....I am getting better...") Your mind need to be convinced and it can help your body take on the signal.

    You will get through this Dennis, Have faith and I hate to say it, but patience. Work on the small things but please talk to your Docs about feeling so low as they can probably help you out.

    Hang in there.
    Scambuster

    wow
    very inspiring. glad you shared that....
    im going to make a list of the things that
    have improved from 22 weeks ago for my boyfriend
    so he might see a little differently.

    thanks,

    K
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member

    wow
    very inspiring. glad you shared that....
    im going to make a list of the things that
    have improved from 22 weeks ago for my boyfriend
    so he might see a little differently.

    thanks,

    K

    taste buds return?
    Unfortunately, they have not for me. But it's not all-bad. Sensations, good and bad, are the rule of the eating day for me. 17-months, now, with a year after the last rad. Something about Sprite/7Up is most excellent. A can of Roadhouse Chili for lunch at work, eaten very slowly. That, too, is excellent. However, French dressing on chef-style salads- the most excellent. The chili and dressing may be extremes, but the taste sensations are okay with me. Nibbling on anything barbeque also is. Thing is- candy bars and less radical food stuffs- it's like there's no taste whatsoever.

    And a big ditto from me for Scambuster's post, Kathy. I might trump him on seniority, but he has been far more pro-active in letting it be real, and knowing what's what. His words are to be heeded by all...I was Morph and ice during weeks #2&3 and #5&6, with Vicodin always available, but never used when on the Morph. 1/2-tabs of Xanax did help with the attitude thing, but never asked my Dr. for a refill after the treatment was done. Did continue with the Vicodin, though, and they do play a part in the attitude thing. Hope may be the keyword. Simply put, the Morph scared me. It took me where I needed to go in the worst of times, but it was not a place I wanted to be- a place beyond my control. Morph did serve a critical role to the positive in my endurance w/treatment, but where it takes one is the exact opposite of why we go thru treatment- to live/survive. Maybe it is not enough to say that surviving the battle is cause enough to regard one's own life as worthwhile, but the battle, in itself, does tell us all that we cared enough about our life to fight and win that battle. And, when the dawn happens over the final battlefield, there comes a time for a reckoning with oneself. Yes- Strength and Honor during the battle, but what about the time after?

    The best answer to that little question can be found in how the experience changes one. In remembrance, and the mindset during the battle, there is most certainly a lost-type area after the celebration of victory has waned. The struggle continues with us all, in that things are not as they were before the C came into our lives; however, a void replaces the daily rads and often-Onco visits, and that void must be recognized for what it is. Resuming one's life in whatever capacity is it's own battle. We all know that as fact. And it is a large struggle. The best we can do is find the reasons to resume that life, latch onto those reasons, and live as the better people we are when we emerge from the battle with success. A minor battle replaces the larger one. And, though it can be just as difficult, perhaps due to the physical changes of post-treatment, the minor battle is the battle we fought the big fight for, and we must seek to make that big fight worthwhile. The seeking finds resolution within oneself, and one's Belief(s), role in life, etc. It is there to be had for all of us- WE ARE SURVIVORS. And, we are H&N- 99% of the world's people are "easy street", compared to where we been. Yeah...

    Scambuster, I take my hat off to you, Brother, for how real you are.

    Believe

    kcass
  • staceya
    staceya Member Posts: 720
    Kent Cass said:

    taste buds return?
    Unfortunately, they have not for me. But it's not all-bad. Sensations, good and bad, are the rule of the eating day for me. 17-months, now, with a year after the last rad. Something about Sprite/7Up is most excellent. A can of Roadhouse Chili for lunch at work, eaten very slowly. That, too, is excellent. However, French dressing on chef-style salads- the most excellent. The chili and dressing may be extremes, but the taste sensations are okay with me. Nibbling on anything barbeque also is. Thing is- candy bars and less radical food stuffs- it's like there's no taste whatsoever.

    And a big ditto from me for Scambuster's post, Kathy. I might trump him on seniority, but he has been far more pro-active in letting it be real, and knowing what's what. His words are to be heeded by all...I was Morph and ice during weeks #2&3 and #5&6, with Vicodin always available, but never used when on the Morph. 1/2-tabs of Xanax did help with the attitude thing, but never asked my Dr. for a refill after the treatment was done. Did continue with the Vicodin, though, and they do play a part in the attitude thing. Hope may be the keyword. Simply put, the Morph scared me. It took me where I needed to go in the worst of times, but it was not a place I wanted to be- a place beyond my control. Morph did serve a critical role to the positive in my endurance w/treatment, but where it takes one is the exact opposite of why we go thru treatment- to live/survive. Maybe it is not enough to say that surviving the battle is cause enough to regard one's own life as worthwhile, but the battle, in itself, does tell us all that we cared enough about our life to fight and win that battle. And, when the dawn happens over the final battlefield, there comes a time for a reckoning with oneself. Yes- Strength and Honor during the battle, but what about the time after?

    The best answer to that little question can be found in how the experience changes one. In remembrance, and the mindset during the battle, there is most certainly a lost-type area after the celebration of victory has waned. The struggle continues with us all, in that things are not as they were before the C came into our lives; however, a void replaces the daily rads and often-Onco visits, and that void must be recognized for what it is. Resuming one's life in whatever capacity is it's own battle. We all know that as fact. And it is a large struggle. The best we can do is find the reasons to resume that life, latch onto those reasons, and live as the better people we are when we emerge from the battle with success. A minor battle replaces the larger one. And, though it can be just as difficult, perhaps due to the physical changes of post-treatment, the minor battle is the battle we fought the big fight for, and we must seek to make that big fight worthwhile. The seeking finds resolution within oneself, and one's Belief(s), role in life, etc. It is there to be had for all of us- WE ARE SURVIVORS. And, we are H&N- 99% of the world's people are "easy street", compared to where we been. Yeah...

    Scambuster, I take my hat off to you, Brother, for how real you are.

    Believe

    kcass

    Taste
    What are scandishakes?
    About 75% of my taste and saliva is back after 3 weeks, but I had a much milder course than some of the other folks here, IMRT to mass (near tonsil) and lymph nodes. No chemo or dissection, surgery but the tumor was on a stalk, so it was more of a snip than a cut.
    I cannot tell if the amifostine was a factor,having no method of comparison, but I am happy about the tastebuds.

    I agree that sleep is very helpful on the healing. Except for jello (food of the gods at this moment) and boost,I can eat little bits before it either hurts too much or seems to clog up in a pile somewhere down my throat. It is funny that milk is better than water to help things go down, I've never drank so much milk in my life!

    My friend made me huge batches of high protein mashed potatoes (20 grams protein in 4 oz) She will give me the recipe tomorrow and I will post it.It was a life saver..there were only a few days when the potatoes were too scratchy.

    I am going to try some 7up. I am afraid of dressings..so many of them burn..but I look forward to salads in the future. I also was watching the food network and making lists of foods I want to eat when I can. Thanks all for sharing!
  • bp360
    bp360 Member Posts: 2
    Reggie13 said:

    Hi Ramseur7,
    I, too, was diagnosed with sqamous cell carcinoma of the base tongue in April of 2003. I had both chemo and radiation treatment for 7 weeks. My doctors said studies show that this is the best way to treat this. I did have a peg tube inserted and still have it. It's been almost 7 months since I completed my treatments. I still do not have any salivary glands or taste buds. The doctors said that they should come back but don't know when. My Faith is the only thing that keeps me going. I can relate to you in wishing that at least you had the taste buds. I, too, think I could tolerate things much better if I had them. I want to eat soooooooooooooooo bad. I know this is not the answer to your question but I just wanted you to know that someone else out there is going through exactly what you are. Sometimes it helps to know this. Please feel free to write me if you wish. With your permission, I will had you to my prayer list.
    Hang in there Buddy,
    Reggie
    (Reggie13 from CSN)

    Swallowing

    Hi Reggie - I hope this note find you well. I see its been 8 years since this post. Did your taste buds return to normal. Do you remember what foods tasted right/good first?  Did you need swallow therapy

    thanks

    bill

  • acedamama
    acedamama Member Posts: 12
    Ramseur7 said:

    I thank everyone who has responded to my message. Hopefully he will have taste buds soon. It is not that he has no taste buds...things just taste terrible. Everything tastes so bad to him that sometimes if he tries something, the gag reflex sets in. He is on Boost Plus shakes made with ice cream and whole milk. Occasionally he will eat/drink chicken broth, although it does not taste good. Just this week, water has been tasting metallic and yogurt tastes like aluminum foil. I hope he can taste steak and lobster! He would love that. How could your husband swallow the steak? Wasn't that hard? Oh yeah, his skin is looking good now. He used Biafine and Emu Oil.

    Can you give me an update?

    My hisband is 8 treatments into radiatin for SCC of the larynx and says everything tastes like garbage - even water. Can you tell me how long this will last? Thanks!

  • sonyk728
    sonyk728 Member Posts: 124
    It took me about 6 weeks post rads and chemo to the mouth

    Hang in there. That was the worst part of my treatment- not being able to taste stuff. If they could market that in a pill we would not have an obesity epidemic. I lived on whole milk and high fat shakes. 1 year later I have no desire for shakes or ice cream. Please hang in there, I know it's rough. Look forward to the day you can enjoy your favorite food!