Squamous Cell Carcinoma Tonsil
Follow the advice, take care of your teeth, skin and your general self mentally and physically be positive this too will pass... I welcome any comments on food that is O K while just being bland (eating for texture and smell at this point)...completed 27 of 33 IMRT sessions as of Friday 10th of Feb.
Dealing with throat and mouth dryness by using a humidifier, rinsing mouth and biotene products as well as lots of H2O. Since using the humidfier I wake up a lot less dry and less often to get a drink. The biggest side effect that is a pain is the loss of taste. Any ideas would be welcomed. Most stuff tasting bland, even though the treatment is primarily affecting just the right side of my oral cavity and neck.
Comments
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Unfortunately it may get
Unfortunately it may get worse before it gets better. I found the last week of rads to be the begining of the worst couple of months. Taste and lack of saliva are the two big changes after the soreness goes away. At four months I can taste most things but it is not as intense. Saliva is pretty good and I don't drink any water during the night and some mornings I actually have a minicule amount of saliva in my month. Funny after going through all of this how we notice things like that.0 -
Taste
I finished 39/39 rad treatemnts along with weekly carboplatin on Dec 30 2011...still using the biotene products and lots of H2O. I probably lost most of my taste 3 weeks into the rad treatments, that being said I continued to eat whether I could taste or not. I found that any red meats , sweets were a major no-no. Now a bit over a month later I'm getting some taste back, my rad doc said it could take up to 3 months or longer, I can taste most veggies and fouhnd out this week I can taste smooth jiff peanut butter..yeah. Each day I try something different. I think we are all different , but I truly miss eating fruit , and hope that in time those taste buds return.
Beat wishes in your treatment,
Linda0 -
Welcome...
Man, you are doing well if that's all you got going on after 4+ weeks of rads, and you can still eat real food.
SImilar Dx, (minus the scallop diving (though I love scallops))... Dx for tonsils cancer back in Jan2009... STGIII SCC HPV+ Right Tonsil and a lymphnode.
Nine weeks of chemo in three weeks cycles (Cisplatin, Taxoter and 5FU). Then an additional seven weeks of concuuretn weekly chemo (Carboplatin) and 35 ailys head shots with the rads.
Around where you are I swapped over from solid foods (no PEG), to just Ensure Plus, water and a few sliced peaches in light syrup (mainly to keep the swallow muscles workinh).
Of course that was all inbetween some liquid pain meds (hydrocodon) and followed up with a ground up Percocet for the pain to come...plenty of water during the feedings also.
I did lose nearly all taste and saliva for several weeks after Tx, but eventually got all the taste back, and nearly all saliva (just lacking at sleep mainly).
As for the rinses during the period you are in. I mainly rinsed with a small amout of baking soda and hydrogen peroxide in some water...swich a spit several mouth fulls.
Best,
John0 -
Who knows
Your story is encouraging in that it demonstrates that the effect of rads is variable on the human organism. Sounds like you are doing quite well. It is true the last week can change things considerably, but maybe not.
I had 35 rad sessions for BOT cancer in 1998, and like you I didn't really turn a hair. Mouth was dry, and taste went away, but I had no mouth sores. My skin didn't seem to care at all, and I worked all the way through.
I'm in treatment again right now. Done with 25 out of 34 sessions for a recurrance on my soft palate. Mouth is pretty sore this time. Skin is doing fine (even after a total of 60 sessions!), taste is low but not yet absent. And I still have saliva, which is pretty wierd because it really was dry the first time.
Count your lucky stars, man. I do when I look around and see how hard this is on some people. I'm among the blessed.
Best to you, fellow traveler.
Pat0 -
Pat - Salivalongtermsurvivor said:Who knows
Your story is encouraging in that it demonstrates that the effect of rads is variable on the human organism. Sounds like you are doing quite well. It is true the last week can change things considerably, but maybe not.
I had 35 rad sessions for BOT cancer in 1998, and like you I didn't really turn a hair. Mouth was dry, and taste went away, but I had no mouth sores. My skin didn't seem to care at all, and I worked all the way through.
I'm in treatment again right now. Done with 25 out of 34 sessions for a recurrance on my soft palate. Mouth is pretty sore this time. Skin is doing fine (even after a total of 60 sessions!), taste is low but not yet absent. And I still have saliva, which is pretty wierd because it really was dry the first time.
Count your lucky stars, man. I do when I look around and see how hard this is on some people. I'm among the blessed.
Best to you, fellow traveler.
Pat
Maybe those taste buds and salivary glands are weathered at this stage...you put them through the test the first time....they aren't given it up this time.
Keep up the good fight, never give in...
Fellow Star Gazer,
John0 -
You knowSkiffin16 said:Pat - Saliva
Maybe those taste buds and salivary glands are weathered at this stage...you put them through the test the first time....they aren't given it up this time.
Keep up the good fight, never give in...
Fellow Star Gazer,
John
That's exactly what the oncologist said to me recently. My response was, so long as that's everything EXCEPT the cancer, that's fine by me:)0 -
Finished Treatmentosmotar said:Taste
I finished 39/39 rad treatemnts along with weekly carboplatin on Dec 30 2011...still using the biotene products and lots of H2O. I probably lost most of my taste 3 weeks into the rad treatments, that being said I continued to eat whether I could taste or not. I found that any red meats , sweets were a major no-no. Now a bit over a month later I'm getting some taste back, my rad doc said it could take up to 3 months or longer, I can taste most veggies and fouhnd out this week I can taste smooth jiff peanut butter..yeah. Each day I try something different. I think we are all different , but I truly miss eating fruit , and hope that in time those taste buds return.
Beat wishes in your treatment,
Linda
Finished Treatment 17th of Feb. Today is Monday 20th still not many foods taste great but they are discernible. Mood is somewhat up and down, had not noted that as a symptom before. THANKS for your input and you are n my prayers.0 -
Finished Treatment 17th ofSkiffin16 said:Welcome...
Man, you are doing well if that's all you got going on after 4+ weeks of rads, and you can still eat real food.
SImilar Dx, (minus the scallop diving (though I love scallops))... Dx for tonsils cancer back in Jan2009... STGIII SCC HPV+ Right Tonsil and a lymphnode.
Nine weeks of chemo in three weeks cycles (Cisplatin, Taxoter and 5FU). Then an additional seven weeks of concuuretn weekly chemo (Carboplatin) and 35 ailys head shots with the rads.
Around where you are I swapped over from solid foods (no PEG), to just Ensure Plus, water and a few sliced peaches in light syrup (mainly to keep the swallow muscles workinh).
Of course that was all inbetween some liquid pain meds (hydrocodon) and followed up with a ground up Percocet for the pain to come...plenty of water during the feedings also.
I did lose nearly all taste and saliva for several weeks after Tx, but eventually got all the taste back, and nearly all saliva (just lacking at sleep mainly).
As for the rinses during the period you are in. I mainly rinsed with a small amout of baking soda and hydrogen peroxide in some water...swich a spit several mouth fulls.
Best,
John
Finished Treatment 17th of Feb. Today is Monday 20th still not many foods taste great but they are discernible. Mood is somewhat up and down, had not noted that as a symptom before. Thanks for the idea on pain pills using them as needed, you are n my prayers.0 -
Survivorlongtermsurvivor said:Who knows
Your story is encouraging in that it demonstrates that the effect of rads is variable on the human organism. Sounds like you are doing quite well. It is true the last week can change things considerably, but maybe not.
I had 35 rad sessions for BOT cancer in 1998, and like you I didn't really turn a hair. Mouth was dry, and taste went away, but I had no mouth sores. My skin didn't seem to care at all, and I worked all the way through.
I'm in treatment again right now. Done with 25 out of 34 sessions for a recurrance on my soft palate. Mouth is pretty sore this time. Skin is doing fine (even after a total of 60 sessions!), taste is low but not yet absent. And I still have saliva, which is pretty wierd because it really was dry the first time.
Count your lucky stars, man. I do when I look around and see how hard this is on some people. I'm among the blessed.
Best to you, fellow traveler.
Pat
Pat, we are truly blessed, I note others that are suffering many more severe side effects than I. Finished Treatment 17th of Feb. Today is Monday 20th still not many foods taste great but they are discernible. Mood is somewhat up and down, had not noted that as a symptom before. THANKS for your input and you are n my prayers hoping and praying this goes well for you this time. Brothers are forever Robert0 -
some recovery thoughtsHugheyRB said:Survivor
Pat, we are truly blessed, I note others that are suffering many more severe side effects than I. Finished Treatment 17th of Feb. Today is Monday 20th still not many foods taste great but they are discernible. Mood is somewhat up and down, had not noted that as a symptom before. THANKS for your input and you are n my prayers hoping and praying this goes well for you this time. Brothers are forever Robert
I am sending you a PM. Congrats on finishing the course of treatment. You get an A+ brother.
Pat0 -
CopngratsHugheyRB said:Survivor
Pat, we are truly blessed, I note others that are suffering many more severe side effects than I. Finished Treatment 17th of Feb. Today is Monday 20th still not many foods taste great but they are discernible. Mood is somewhat up and down, had not noted that as a symptom before. THANKS for your input and you are n my prayers hoping and praying this goes well for you this time. Brothers are forever Robert
Congrats on finishing your treatments , mine ended Dec 30, 2011. Now just waiting to go for my first follow-up PET, now that both the chemo oncologist and radiation oncologist have talked, it is scheduled for the end of March. Many foods still don't have any flavor to me, but I try something new each day, last week I was able to taste peanut butter, today I tried a dill pickle and could taste that. Most veggies are good for me...but like everything else, I take it a day at a time.
Best of the best
Linda0 -
Ups and DownsHugheyRB said:Finished Treatment 17th of
Finished Treatment 17th of Feb. Today is Monday 20th still not many foods taste great but they are discernible. Mood is somewhat up and down, had not noted that as a symptom before. Thanks for the idea on pain pills using them as needed, you are n my prayers.
I think it's very normal right now for the moods...
It's kind of a scary place for you right now, or was for me. You go from being the center of attention for many weeks.
Everything is all about you, someone in your life everyday fighting for your survival.
Then all of a sudden you have finished treatment, and you are kind of cut loose. Your contact goes into a 6 - 8 week visits for scopes and scans (or at least for me).
It's very scary, not having any real confirmation if treatment was successful as of yet.
I can only offer to try to still maintain your recovery. Try to start getting back into some normalacy. Take walks and get some exercise, and trust and have faith.
You have been trough a war, it takes a little while to get your head straight. I'm sure in a few months when you get your scans odds are you are well on your way to many years of life and survivorship.
Thoughts & Prayers,
John0 -
One day at a timeosmotar said:Copngrats
Congrats on finishing your treatments , mine ended Dec 30, 2011. Now just waiting to go for my first follow-up PET, now that both the chemo oncologist and radiation oncologist have talked, it is scheduled for the end of March. Many foods still don't have any flavor to me, but I try something new each day, last week I was able to taste peanut butter, today I tried a dill pickle and could taste that. Most veggies are good for me...but like everything else, I take it a day at a time.
Best of the best
Linda
You are so right. Had first beer post treatment Friday and it was great.0 -
One day at a timeosmotar said:Copngrats
Congrats on finishing your treatments , mine ended Dec 30, 2011. Now just waiting to go for my first follow-up PET, now that both the chemo oncologist and radiation oncologist have talked, it is scheduled for the end of March. Many foods still don't have any flavor to me, but I try something new each day, last week I was able to taste peanut butter, today I tried a dill pickle and could taste that. Most veggies are good for me...but like everything else, I take it a day at a time.
Best of the best
Linda
You are so right. Had first beer post treatment Friday and it was great.0
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