Tongue & Throat Cancer
Comments
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Foodnicki74 said:Staying Positive
Hi Cathy
Thank you so much for your response. I am glad that your boyfriend is getting better. He is definitely in my prayers! Now i know exactly why they call this a battle, it is not just the disease itself, it is the battle to stay positive and strong... my dad is in good spirits.. i think the hard part is because he cant actually talk and tell us that, so we just purchased him an erase board! lol.. i actually got a chance to chat with SASH a little bit yesterday too, his story is amazing too..
We are all staying positive for my dad, although at times we have those breakdowns, but I will tell you that I have never looked foward to Summer so much in my life! This snow is just cold and depressing.... my mom stays strong, well in front of me.. he goes in Tuesday for the Trach and PEG, and the surgeon will take a closer look again with a scope, also at that time he will have some teeth pulled.. i have a very good feeling about the outcome of this ordeal and have strong faith that he will pull through like a champ!
thank you again, and as always each and every person going through this, patient and caregiver, will be in my prayers..
take care, nicki
Hello, my name is Rick and I am a 10 year tongue cancer survivor. Total glasectomy (removal of the tongue), bi-laterial neck disection plus all the other procedures and treatments that go with that. Getting the necessary calories and protiens are extremely important so I will share what I eat daily. 3 cans of Boost or Ensure,you can use the Plus versions of Boost or Ensure if you need the extra cals. or protien, 4-6 tlbs. of Peanut butter witch does make it thick but I thin that out with Soy Milk then I blend that with an immersion blender as I cannot have any solids at all. I have found that dairy products caused my mucis to become very thick, so I stoped useing milk and Ice Cream in my mixture.This makes about 1 1/2 quarts of food for me. PB was first invented to help elderly paitents to get all the calories and protiens they needed.I am now in very good health and haven't had the need of Drs. for 4 years now. I hope this will help and Thanks for listening. I have been through the worst case scenario for tongue cancer so if my experiances can help anyone just ask.
Rick0 -
Some of what Tim went throughnicki74 said:Staying Positive
Hi Cathy
Thank you so much for your response. I am glad that your boyfriend is getting better. He is definitely in my prayers! Now i know exactly why they call this a battle, it is not just the disease itself, it is the battle to stay positive and strong... my dad is in good spirits.. i think the hard part is because he cant actually talk and tell us that, so we just purchased him an erase board! lol.. i actually got a chance to chat with SASH a little bit yesterday too, his story is amazing too..
We are all staying positive for my dad, although at times we have those breakdowns, but I will tell you that I have never looked foward to Summer so much in my life! This snow is just cold and depressing.... my mom stays strong, well in front of me.. he goes in Tuesday for the Trach and PEG, and the surgeon will take a closer look again with a scope, also at that time he will have some teeth pulled.. i have a very good feeling about the outcome of this ordeal and have strong faith that he will pull through like a champ!
thank you again, and as always each and every person going through this, patient and caregiver, will be in my prayers..
take care, nicki
Hi Nicki
SASH helped me as well, awesome! Everyone here is really great.
Tim's talking got worse and worse until he started treatment, then it got a little better, not much. After treatment was over, it got worse again but since he has gotten over the worst of the pain his speech is slowly returning to were I can understand him.
Tim's last two treatments, were the day the second snow storm hit VA and he was bound and determined to get to the hospital for treatment, and he did! I'm ready for warmer weather as well.
Tim and I knew that there is alot of negative things w/cancer. We just took it one day at a time and didn't think about the bad things coming, we just dealt with them on a day to day basis. His doctor was brutally honest about pain and such and Tim appreciated it, he gave him timelines on pain and radiation burns and such, I can't say everything happened on that timeline and your dad won't be the same as everyone else.
Keep breathing - Cathy0 -
thank you again Cathy and hiRackem said:Food
Hello, my name is Rick and I am a 10 year tongue cancer survivor. Total glasectomy (removal of the tongue), bi-laterial neck disection plus all the other procedures and treatments that go with that. Getting the necessary calories and protiens are extremely important so I will share what I eat daily. 3 cans of Boost or Ensure,you can use the Plus versions of Boost or Ensure if you need the extra cals. or protien, 4-6 tlbs. of Peanut butter witch does make it thick but I thin that out with Soy Milk then I blend that with an immersion blender as I cannot have any solids at all. I have found that dairy products caused my mucis to become very thick, so I stoped useing milk and Ice Cream in my mixture.This makes about 1 1/2 quarts of food for me. PB was first invented to help elderly paitents to get all the calories and protiens they needed.I am now in very good health and haven't had the need of Drs. for 4 years now. I hope this will help and Thanks for listening. I have been through the worst case scenario for tongue cancer so if my experiances can help anyone just ask.
Rick
thank you again Cathy and hi rick,
Rick I do have a few questions, if you dont mind... My father has already lost about 30lbs, and will start his induction chemo in about a week or two after he goes in for the trach, PEG tube, and removal of 9 teeth.. he has been unable to eat because of the tumor in his mouth being so painful, so do you suggest he adds the PB to his shakes? we need to put some weight on him.. he decided to not do the removal of the tongue, voicebox and jaw, because the doctor's told him that the cure rate with the surgery was 60% and for chemo/radiation 50%, so for 10% he opted for the chemo/radiation, actually we all decided as a family.. is there anything else you could recommend for weight gain?
thank you and congrats on 10 years!
nicki0 -
Hi Nickinicki74 said:hi, my father was recently
hi, my father was recently diagnosed with tongue cancer, stage iv.. he goes in next tuesday so the surgeon can put a scope in to get a better look to make sure we havent missed anything, and i pray that we didnt..at that time they will put in a trach and feeding tube.. he is 56 yrs old.. he has already lost about 30lbs, because the tumor under his tongue has been so painful that he could not eat solids, just basically yogurts, protein shakes and drinks... i want to keep him and my mom, and of course myself positive.. does anyone have any thoughts?
about a week after this first stay, he will then go in 5 days a week for 7 weeks for treatment.. the oncologist also said something about starting the induction chemo while he was in the hospital... is anyone also familiar with the induction chemo?
thank you so much for your time.. this website has been great!
Nicki,
Glad you made your way to this website - I can't tell you how helpful the folks here have been for me.
I had induction chemo (3 rounds) from November to January, and started chemo-radiation January 25. Several others here have had induction chemo, too. If you have any questions, feel free to ask. I did not stay in the hospital for any of my treatment regimen (but was hospitalized for 9 days in December). Chemo experiences vary from person to person - even when they're on the same treatment plan. For the induction chemo phase, I went in and spent a day getting chemo through an IV, then went home, and got another chemo IV that was hooked up to a drug in a fanny pack with a pump that pumped the chemo drug into me wherever I was for 5 days. Then 21 days after the first day, I started the cycle again.
It's good you're gathering info now. Read all you can here, and ask questions - there's a lot of experience here.
Good luck,
- Pam0 -
Peanut Butternicki74 said:thank you again Cathy and hi
thank you again Cathy and hi rick,
Rick I do have a few questions, if you dont mind... My father has already lost about 30lbs, and will start his induction chemo in about a week or two after he goes in for the trach, PEG tube, and removal of 9 teeth.. he has been unable to eat because of the tumor in his mouth being so painful, so do you suggest he adds the PB to his shakes? we need to put some weight on him.. he decided to not do the removal of the tongue, voicebox and jaw, because the doctor's told him that the cure rate with the surgery was 60% and for chemo/radiation 50%, so for 10% he opted for the chemo/radiation, actually we all decided as a family.. is there anything else you could recommend for weight gain?
thank you and congrats on 10 years!
nicki
Hey Nicki, If your father can swallow well enough I think adding PB to his "shakes" would help with his weight. 1 serving of PB (2 tlbs.) has 190 calories and 6 grams of protien. I put at least 6 tlbs. in my (food) everyday. He may also like the taste of the PB specially in a chocolate shake kinda like a Peanut Butter Cup. I had tried the weight gain powders you can buy at the health food store but that did not seem to mix up as well as I liked, you could try those but they can be expensive. I developed my (food) mixture to be cost effective because I am on a fixed income and have to watch my pennys. I hope this has helped.0 -
Update-TrachPam M said:Hi Nicki
Nicki,
Glad you made your way to this website - I can't tell you how helpful the folks here have been for me.
I had induction chemo (3 rounds) from November to January, and started chemo-radiation January 25. Several others here have had induction chemo, too. If you have any questions, feel free to ask. I did not stay in the hospital for any of my treatment regimen (but was hospitalized for 9 days in December). Chemo experiences vary from person to person - even when they're on the same treatment plan. For the induction chemo phase, I went in and spent a day getting chemo through an IV, then went home, and got another chemo IV that was hooked up to a drug in a fanny pack with a pump that pumped the chemo drug into me wherever I was for 5 days. Then 21 days after the first day, I started the cycle again.
It's good you're gathering info now. Read all you can here, and ask questions - there's a lot of experience here.
Good luck,
- Pam
Hello everyone.. well my father had his surgery yesterday, they put in the trach, feeding tube and pulled about 10 teeth.. he is still in ICU today, but i will tell you all that when i first seen him after surgery, he looked great! better than he has looked in quite awhile.. the trach i think is the hardest part.. has anyone had experience with this?
he will hopefully get his own room today, and get home by Friday.. even with that morphine button, and other meds, my dad still knows what is going on! he is already my hero..
he has a follow-up appointment with the dentist next friday, and from there they will decide when to start the induction chemo.. yay!
the surgery took about 5 hrs, and last the part of it was the surgeon going in with a scope, to do a biopsy of tumor, and also to make sure that it did not spread down his throat and/or to his lungs.. i am very happy to report that it did not spread! thanks to all of you on this board, i am in very good spirits, and i do believe that he will pull through all of this!
i will keep you all posted!
in my prayers..
nicki0 -
Hang In Therecatya88 said:Tim - out of hospital
Good to hear from you Kent.
Tim was released Monday with liquid morphine and pain patches.
He is doing better with the pain and the mucus. He is working from home, but was very tired this morning, probably because he did too much yesterday.
Has a appointment today with the onocologist and we have a support mtg tonight. When I saw the oncologist in the hospital, she said they wouldn't be able to tell anything until he heals, about 6 weeks out. His ENT appointment is March 9th and radiologist late March early April.
He's doing well with the tube feedings, still trying to take liquids.
Radiation burns on his neck are almost gone.
Now that the worst pain is over, Tim is doing better mentally, as you know, that first week of pain is the worst but, he survived. Getting back to his home helped alot.
Thanks again Kent, we believe - Cathy
As a caregiver to my husband, I can tell you that things will change for the better. Bob went thru 35 rads to the base of the tongue and Erbitux once a week. Once he finished treatment it wasn't much longer than 3-4 weeks that he had his feeding tube pulled. He has had his first PET scan which was an A+ and will have a second one the end of April. He is eating everything and hungry. Soda and sweets are not good, but his taste for most food is improving. We are currently vacationing on St. Simons Island, GA until mid April and are playing golf, walking, and biking. So BELIEVE!!!!
Phyllis0 -
2/3 of my tongue remaining after surgeryhawk711 said:Head and neck conference
HI Cathy
I was wondering if you went to the conference to hear the H & N survivors speak? We'd all like to hear if there were any good tips or ideas that you picked up.
I wish Tim the best in his recovery and cure. I too am just about to begin the treatments of radiation and chemo for 6 weeks.
I am learning alot about the process from my Dr's and all the comments from friends on this site.
I am adding all the great folks on this site to my prayers daily.
Steve
Hi hawk711:
I've been scrolling through the various comments here searching for someone whose situation is similar to mine. I really haven't found anyone. Maybe you can help me or turn me on to someplace I might go online to find out what to do. What I mean is that five years ago I first was diagnosed with cancer of my tongue and went through a couple months of chemotherapy and radiation treatments. I was OK till late 2008 when it was discovered that the cancer cells were in my tongue once again. In January last year I had surgery during which they removed about 1/3 of my tongue. They severed a major nerve having to do with my left shoulder. I am unable to eat or drink and speaking is very difficult. I guess the main problem (assuming I will never eat or drink again other than by pouring "adult nutritional beverage" into my feeding tube) is that there is a lot of mucus always in my mouth and it's become impossible to spit it out or swallow it. Over the months this lump of mucus has moved further down from its original location in my mouth and into the middle of my throat. I wonder if you know or if anybody you know knows how to make this mucus go away or how to deal with hygiene in this area. I cannot swallow or gargle. Spitting is only barely possible, usually after I have first sipped a small amount of water.
I know that my situation is more or less unique. When I talk to my physicians they seem to regard me as a one of a kind human. (They don't seem to have experience with anyone who is in my situation). I'm sending this message to you as a kind of SOS.
Any guidance you might have would be gladly received. This is a big understatement.
Thank you,
Lee Schmidt,
Abiquiu, New Mexico0 -
Tim's recoverynicki74 said:Update-Trach
Hello everyone.. well my father had his surgery yesterday, they put in the trach, feeding tube and pulled about 10 teeth.. he is still in ICU today, but i will tell you all that when i first seen him after surgery, he looked great! better than he has looked in quite awhile.. the trach i think is the hardest part.. has anyone had experience with this?
he will hopefully get his own room today, and get home by Friday.. even with that morphine button, and other meds, my dad still knows what is going on! he is already my hero..
he has a follow-up appointment with the dentist next friday, and from there they will decide when to start the induction chemo.. yay!
the surgery took about 5 hrs, and last the part of it was the surgeon going in with a scope, to do a biopsy of tumor, and also to make sure that it did not spread down his throat and/or to his lungs.. i am very happy to report that it did not spread! thanks to all of you on this board, i am in very good spirits, and i do believe that he will pull through all of this!
i will keep you all posted!
in my prayers..
nicki
Hi everyone
March 9th will be one month since Tim finished treatment. I'm happy to report the mucus has subsided.
However, he is extremely fatigued. I know it's only been about a month and he has many, many months before he will even begin to feel up and about. He did get two bags of blood in the hospital when he was in for pain management.
I'd like to hear other stories on this and how long it took others. I know everyone is different, I would just like to know.
His pain still comes and goes but is getting below a 5 on a scale of 1 to 10.
He is still doing 6 cans a day and has yet to gain any weight with all that, I assume because his body is working hard to heal itself after the radiation/chemo treatments.
Nicki - That's good news on your father!
Thinking of all - Cathy0 -
updatecatya88 said:Tim's recovery
Hi everyone
March 9th will be one month since Tim finished treatment. I'm happy to report the mucus has subsided.
However, he is extremely fatigued. I know it's only been about a month and he has many, many months before he will even begin to feel up and about. He did get two bags of blood in the hospital when he was in for pain management.
I'd like to hear other stories on this and how long it took others. I know everyone is different, I would just like to know.
His pain still comes and goes but is getting below a 5 on a scale of 1 to 10.
He is still doing 6 cans a day and has yet to gain any weight with all that, I assume because his body is working hard to heal itself after the radiation/chemo treatments.
Nicki - That's good news on your father!
Thinking of all - Cathy
hello all, i am so happy to hear that Tim is finally getting some sort of relief! pain below a 5, sounds like a definite improvement!
my dad comes home today! i think the hardest part is helping my mom with the flushing of the trach.. she is soo overwhelmed right now, and scared... but i know she will be amazing.. he finally starts his induction chemo on or about monday, march 15, i am so excited for the actual treatments to start..
after having his teeth pulled, he no longer is complaining of any pain under his tongue, so he is going from oxycotin to tylenol, i just cannot believe it! so i am sure the teeth were applying a lot of pressure on the tumor.. i am glad to see him have some relief of pain before the actual treatments begin...
all of you are in my prayers, and i am so grateful for this website!
xoxo
nicki0 -
hyperbaricnicki74 said:update
hello all, i am so happy to hear that Tim is finally getting some sort of relief! pain below a 5, sounds like a definite improvement!
my dad comes home today! i think the hardest part is helping my mom with the flushing of the trach.. she is soo overwhelmed right now, and scared... but i know she will be amazing.. he finally starts his induction chemo on or about monday, march 15, i am so excited for the actual treatments to start..
after having his teeth pulled, he no longer is complaining of any pain under his tongue, so he is going from oxycotin to tylenol, i just cannot believe it! so i am sure the teeth were applying a lot of pressure on the tumor.. i am glad to see him have some relief of pain before the actual treatments begin...
all of you are in my prayers, and i am so grateful for this website!
xoxo
nicki
hello again, i know some of you, i think SASH said that you had teeth pulled before you started treatments? i just came across a post under head and neck cancers/dental problems referring to something called hyperbaric treatment, now my dad just had teeth pulled and this is the first time i have heard of this, should i be concerned that he did not have this done before having teeth pulled?
thanks again!
nicki0 -
Teethnicki74 said:hyperbaric
hello again, i know some of you, i think SASH said that you had teeth pulled before you started treatments? i just came across a post under head and neck cancers/dental problems referring to something called hyperbaric treatment, now my dad just had teeth pulled and this is the first time i have heard of this, should i be concerned that he did not have this done before having teeth pulled?
thanks again!
nicki
Hi Nicki
Good news on your dad. Flushing won't be a problem, it was overwhelming for me also but now it's second hand.
Tim didn't have any teeth pulled but had a cleaning and got some flouride trays he uses everyday. Radiation is hard on the teeth. At the support group they recommended finding a dentist who specializes in Cancer.
We found some gel and liquid for Tim to use in his mouth to keep it moist, it was from Biotene, one lady said she liked Oasis dry mouth products better.
Still fighting the fatigue. He's starting to do better with liquids water/tea/coffee but nothing thick like shakes or yogurts.
Talking is a little better.
Until next time, take care - Cathy0 -
Trach carenicki74 said:Update-Trach
Hello everyone.. well my father had his surgery yesterday, they put in the trach, feeding tube and pulled about 10 teeth.. he is still in ICU today, but i will tell you all that when i first seen him after surgery, he looked great! better than he has looked in quite awhile.. the trach i think is the hardest part.. has anyone had experience with this?
he will hopefully get his own room today, and get home by Friday.. even with that morphine button, and other meds, my dad still knows what is going on! he is already my hero..
he has a follow-up appointment with the dentist next friday, and from there they will decide when to start the induction chemo.. yay!
the surgery took about 5 hrs, and last the part of it was the surgeon going in with a scope, to do a biopsy of tumor, and also to make sure that it did not spread down his throat and/or to his lungs.. i am very happy to report that it did not spread! thanks to all of you on this board, i am in very good spirits, and i do believe that he will pull through all of this!
i will keep you all posted!
in my prayers..
nicki
My husband has end stage laryngeal cancer. Had a trach put in September too help him breathe. He can get some words out by putting his finger over the trach. Passy muir valve did not work for him. When he first got the trach we used to suction, it worked for a while, we don't do it any more. He just coughs mucus out continuously and it wears him out. Very frustrating. He uses a nebulizer/humidifier with trach mask at night. The compressor noise is very annoying and I can take only so much, so I get up @ 4 am. and go to the couch. Make sure the area around the trach is kept clean, use hydrogen peroxide/water to clean it. Make sure the trach ties are clean and dry. Also, you can re- use the inner cannulas.(the disposable ones) I just soak them in hydrogen peroxide, then rinse with warm water. Saves some money, as they are not cheap. Hope this helps some. We just live each day the best we can. My husband does not talk about how he feels or what he thinks. This is most frustrating and sad for me. I need to know what's going on. I don't want him to be in pain and it just breaks my heart to see him as he is, slowly dying. I have to hide my tears, don't want to upset him. I'll get through this somehow. Sorry, I needed to vent a little. Hang in there, thinking of you.0 -
No Shame in Ventingjunklady said:Trach care
My husband has end stage laryngeal cancer. Had a trach put in September too help him breathe. He can get some words out by putting his finger over the trach. Passy muir valve did not work for him. When he first got the trach we used to suction, it worked for a while, we don't do it any more. He just coughs mucus out continuously and it wears him out. Very frustrating. He uses a nebulizer/humidifier with trach mask at night. The compressor noise is very annoying and I can take only so much, so I get up @ 4 am. and go to the couch. Make sure the area around the trach is kept clean, use hydrogen peroxide/water to clean it. Make sure the trach ties are clean and dry. Also, you can re- use the inner cannulas.(the disposable ones) I just soak them in hydrogen peroxide, then rinse with warm water. Saves some money, as they are not cheap. Hope this helps some. We just live each day the best we can. My husband does not talk about how he feels or what he thinks. This is most frustrating and sad for me. I need to know what's going on. I don't want him to be in pain and it just breaks my heart to see him as he is, slowly dying. I have to hide my tears, don't want to upset him. I'll get through this somehow. Sorry, I needed to vent a little. Hang in there, thinking of you.
Junklady,
We all need to vent - you certainly seem to have more cause than most. Very sorry you are losing your husband.
Glad to see that even in your pain, you are still helping others. It really makes a difference. Hang in there.0 -
God bless you, Junklady ...junklady said:Trach care
My husband has end stage laryngeal cancer. Had a trach put in September too help him breathe. He can get some words out by putting his finger over the trach. Passy muir valve did not work for him. When he first got the trach we used to suction, it worked for a while, we don't do it any more. He just coughs mucus out continuously and it wears him out. Very frustrating. He uses a nebulizer/humidifier with trach mask at night. The compressor noise is very annoying and I can take only so much, so I get up @ 4 am. and go to the couch. Make sure the area around the trach is kept clean, use hydrogen peroxide/water to clean it. Make sure the trach ties are clean and dry. Also, you can re- use the inner cannulas.(the disposable ones) I just soak them in hydrogen peroxide, then rinse with warm water. Saves some money, as they are not cheap. Hope this helps some. We just live each day the best we can. My husband does not talk about how he feels or what he thinks. This is most frustrating and sad for me. I need to know what's going on. I don't want him to be in pain and it just breaks my heart to see him as he is, slowly dying. I have to hide my tears, don't want to upset him. I'll get through this somehow. Sorry, I needed to vent a little. Hang in there, thinking of you.
... and your husband.
Thus far (17 months out of treatment) I'm cancer free, and I tend to breeze along, thinking everything's OK. But now and then I get reminders that things can go wrong in a heartbeat, and it's reminders like yours that help me become grounded and to remember what's important in life.
Thank you for that.
--Jim in Delaware0 -
In my prayers Junkladydelnative said:God bless you, Junklady ...
... and your husband.
Thus far (17 months out of treatment) I'm cancer free, and I tend to breeze along, thinking everything's OK. But now and then I get reminders that things can go wrong in a heartbeat, and it's reminders like yours that help me become grounded and to remember what's important in life.
Thank you for that.
--Jim in Delaware
Thank you for your response, and please understand venting is healthy, you should not hold all those emotions inside.. you and your husband are in my prayers.. he is lucky to have you..0 -
Junkladynicki74 said:In my prayers Junklady
Thank you for your response, and please understand venting is healthy, you should not hold all those emotions inside.. you and your husband are in my prayers.. he is lucky to have you..
You and your husband are in my prayers and please know, you are not alone, we are all here for you.
Much love - Cathy0 -
Update on Timcatya88 said:Junklady
You and your husband are in my prayers and please know, you are not alone, we are all here for you.
Much love - Cathy
Hello everyone
Tim is slowly recovering. The mucas is all gone. The pain has subsided substantially. He has a little taste and then it goes metalic. He is starting to swallow mushy foods and still doing his cans. His fatigue still comes and goes.
He see's his radiologist next week and they will then set a date for his PET scan and see what that shows as far as surgery.
Hope everyone is well - Cathy0 -
Good to hearcatya88 said:Update on Tim
Hello everyone
Tim is slowly recovering. The mucas is all gone. The pain has subsided substantially. He has a little taste and then it goes metalic. He is starting to swallow mushy foods and still doing his cans. His fatigue still comes and goes.
He see's his radiologist next week and they will then set a date for his PET scan and see what that shows as far as surgery.
Hope everyone is well - Cathy
Cathy- sounds good. The Pet will very likely be a non-event, so don't sweat it. Too early for anything to be taken seriuously. Has he tried pancakes? Good stuff.
kcass0 -
Good to hear from you KentKent Cass said:Good to hear
Cathy- sounds good. The Pet will very likely be a non-event, so don't sweat it. Too early for anything to be taken seriuously. Has he tried pancakes? Good stuff.
kcass
Yesterday Tim had a piece of ham and cheese for lunch and two small servings of mac and cheese for dinner. He tried some bread but that didn't go well, even though it was moist, it was still too dry.
More later - Cathy0
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