Tongue & Throat Cancer

damocles

nicki74 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,
I am a 9 year
Hi Nicki,
I am a 9 year stage III tonsil cancer survivor. Hyperbaric Oxygen treatment is used to help promote healing in an area that has previously been directly irradiated. It entail being put in a chamber of 100% oxygen for about 30 minutes, while having the chamber slowly pressured to about 3 times atmospheric presure, it is pain less and really helps..Before my throat irradiation the oral surgeon said that I would not need to have any teeth removed based on the radiation dosage and treatment plan. I belive that in a lot of cases teeth do have to be removed before radiation. This helps reduce the chances of osteonecrosis( dead bone) in the jaw..Even though the jaw itself may not receive direct radiation, all the blood vessels supplying blood to the the jaw/teeth are effected, the vessels become more narrow and hardened due to the radiation.. Due to th lack of saliva for the past nine years, my teeth have deteriated badly, and I am now having to have some removed and healing has been okay so far without the help of Hyperbaric Oxygen treatment..Hope this might help you better understand about having the teeth pulled before the radiation, it is strictly a judgement call on behalf of the oral surgeon...

damocles

nicki74 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

Tonsil Cancer
Hi Everyone,
I'm new here, and wanted express my experience with Stage III Tonsil cancer that might give some insight to others, I am a 9 years survivor this October. There is something I want to say here that is very important for everyone who is going to have or has a needle port placed under the skin in their chest for the purpose of better facilitating chemo injection everyday, the ports are great, since they don't have to dig around with a needle looking for a vein in your arm. But this happened to me, the port stopped working near the end of treatment, though the nurses tried hard to get it to work, it never did..One nurse said to me, this is not too unusual we have people come in with ports in all kinds of conditions, so the Surgeon who implanted it never never checked up on me, and the nurses I guess never reported it to anyone..So the chemo was finished using the veins in my arms...Now here's the kicker...It turned out that the reason the port stopped working, is because the cathther from the port(5 inches long) to the subclavian vein under the collarbone broke loose from the port, and to make a long story short, it was later found stuck in my heart, after being discovered by a Radiologist doing a routine chest X-ray, Cardiologist tried to retrieve it, but could not do so safely, saw another Cardiologist, and hes said the only way to remove it was with open heart surgery, and that could be dangerous.. I researched it some myself, and though they say it is extremely rare,it apparantly happens frequently enough that they have a name for it, it called "Pinch off Syndrome" Anyway, it is still stuck in my heart, one end in the upper chamber of the heart, and the other end in the lower chamber of the heart, with the valve opening and closing on it with each beat of the heart...Sorry this story turned out so long, but wanted to make everyone aware of this rare possiblity, and if your port stops working, make them x-ray it immdiately..

Kent Cass

catya88 said:

Good to hear from you Kent
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 - Cathy

Salad
Yes, I remember the mac and cheese. One step at a time, Cathy, and trial and error. Again, pancakes were the first step for me.

Cathy- praise to you, girl. As you may have noted, the C and treatment does bring times of trial to those directly involved, and the relationship. Tim most certainly does have a soulmate with you, and that is so- gets no grander than that, here on Earth, Cathy. You are most praiseworthy. History, in our lives, is what we experience with the C. Tim is very fortunate to have one such as you by his side, Cathy.

Believe

kcass

catya88

Kent Cass said:

Salad
Yes, I remember the mac and cheese. One step at a time, Cathy, and trial and error. Again, pancakes were the first step for me.

Cathy- praise to you, girl. As you may have noted, the C and treatment does bring times of trial to those directly involved, and the relationship. Tim most certainly does have a soulmate with you, and that is so- gets no grander than that, here on Earth, Cathy. You are most praiseworthy. History, in our lives, is what we experience with the C. Tim is very fortunate to have one such as you by his side, Cathy.

Believe

kcass

Thanks
Kent, you're such a sweetheart.

I didn't have much time last reply. Since the mac and cheese, he has also had some eggs, meatloaf, noodles, peas and cheesecake. Bread is still hard, needs to be wet down with gravy or sauce.

Seems like this (eating orally) happened so suddenly yet, I know there is still surgery, although we won't know that for a while.

He sees the radiologist and oncologist today. There is a support meeting tonight that we will attend.

Everything seems better. His talking is much improved, he says he is tasting a little more each day and the pain is really down. His dry mouth is so, so but I found pure honey drops that he can use to help with that.

He's still working half days but said he will try a full day tomorrow. The only thing I'm not happy about is he wants to travel for work next month, 3 trips! I'll try to talk some sense into him but doubt I'll have much luck, oh well...............

More tomorrow after I hear what the doctors said.

Kent, are you cancer free? Remind me again what you cancer was.

Much love to all - Cathy

handl1983

Pam 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

Hi Everyone!
I am new to
Hi Everyone!

I am new to this sight and after reading alot of your posts, I dont see the same treatment for alot of you folks that my husband has had. He was diagnosed with stage IV SCC in April of '09. His main oncologist suggested a three part treatment. First- induction chemo (which almost killed him) then surgery to remove the lump and right tonsil, then 7 weeks of radiation at 25 minutes per day. Everything that could have gone wrong, has. He has an incredible amount of ear pain because of the surgery and radiation. He has lost 30lbs and cant seem to gain it back, probably because there is a hole in his small pallate which makes food or drink come out his nose! (We laugh, but its really embarassing) He also had six more chemo treatments along with the radiation, and,oh yes, I forgot- they pulled his teeth out before radiation which held up the treatment for six weeks. He then had a CAT & PET scan done in February only to reveal that it had travelled into his lung. Surgery to remove 1/4 of his right lung was done on March 5th. He has recovered from that pretty well, but the swallowing and ear pain are terrible. I hate to see him like this and I cant even imagine how you people find the strength to keep going! His next CAT & PET scans are May 5th and he has told me if it has shown up anywhere else, he doesnt think he can fight anymore. I am a pretty strong person and have, by the grace of God, gotten this far, but sometimes I feel like I am alone in this, so it was great to find this sight. If anyone has any pointers or advice for us- I would truly appreciate it. Thanks for reading my post. I will try to keep you all in my prayers, because I know where you are all coming from. God Bless, and thanks again. Looking forward to hearing from you.

handl1983

HANG TOUGH!
When my husband was diagnosed, I remember sitting in the Dr's office, very calmly asking what stage the cancer was. He told us "stage IV" It was pretty scary, but then he went on to say how many great treatments are out there now. It has been a very long,hard year for us, and I wont lie to you-it will not be fun! The best advice I can offer you as a care giver is that you are your own advocate. Do not settle for something if you feel it isnt right- ask questions!!!! That is why the Dr's are there! The Dr's, P.A.'s and nurses do this every day and sometimes they forget we are new to this, and don't understand what they are talking about! Ask them to dummy it up for you!! My heart and prayers go out to you! I see that you began this in December- how is everything going now? I wish I had known about this sight before now, as I am sure it would have helped immensely!! May God be with you during this time!!!
lori

Kent Cass

catya88 said:

Thanks
Kent, you're such a sweetheart.

I didn't have much time last reply. Since the mac and cheese, he has also had some eggs, meatloaf, noodles, peas and cheesecake. Bread is still hard, needs to be wet down with gravy or sauce.

Seems like this (eating orally) happened so suddenly yet, I know there is still surgery, although we won't know that for a while.

He sees the radiologist and oncologist today. There is a support meeting tonight that we will attend.

Everything seems better. His talking is much improved, he says he is tasting a little more each day and the pain is really down. His dry mouth is so, so but I found pure honey drops that he can use to help with that.

He's still working half days but said he will try a full day tomorrow. The only thing I'm not happy about is he wants to travel for work next month, 3 trips! I'll try to talk some sense into him but doubt I'll have much luck, oh well...............

More tomorrow after I hear what the doctors said.

Kent, are you cancer free? Remind me again what you cancer was.

Much love to all - Cathy

Nasopharyngeal
That's my C, Cathy, and I sure am hoping I'm C-free. My next Pet/Ct is April 8th.

I really am impressed with how Tim's doing. Hope he knows how lucky he is to have you. How did it go with the Onco and Rad? Please let us know, Cathy.

kcass

Pumakitty

handl1983 said:

HANG TOUGH!
When my husband was diagnosed, I remember sitting in the Dr's office, very calmly asking what stage the cancer was. He told us "stage IV" It was pretty scary, but then he went on to say how many great treatments are out there now. It has been a very long,hard year for us, and I wont lie to you-it will not be fun! The best advice I can offer you as a care giver is that you are your own advocate. Do not settle for something if you feel it isnt right- ask questions!!!! That is why the Dr's are there! The Dr's, P.A.'s and nurses do this every day and sometimes they forget we are new to this, and don't understand what they are talking about! Ask them to dummy it up for you!! My heart and prayers go out to you! I see that you began this in December- how is everything going now? I wish I had known about this sight before now, as I am sure it would have helped immensely!! May God be with you during this time!!!
lori

Just found out
I just found out my dad has IV tongue cancer. Is has spread to one lympe node in his neck. The Dr. said he would need radiation and Chemo. I think it will start around April 12th. I have found reading the posts very helpful.

Pumakitty

handl1983 said:

HANG TOUGH!
When my husband was diagnosed, I remember sitting in the Dr's office, very calmly asking what stage the cancer was. He told us "stage IV" It was pretty scary, but then he went on to say how many great treatments are out there now. It has been a very long,hard year for us, and I wont lie to you-it will not be fun! The best advice I can offer you as a care giver is that you are your own advocate. Do not settle for something if you feel it isnt right- ask questions!!!! That is why the Dr's are there! The Dr's, P.A.'s and nurses do this every day and sometimes they forget we are new to this, and don't understand what they are talking about! Ask them to dummy it up for you!! My heart and prayers go out to you! I see that you began this in December- how is everything going now? I wish I had known about this sight before now, as I am sure it would have helped immensely!! May God be with you during this time!!!
lori

Just found out
I just found out my dad has IV tongue cancer. Is has spread to one lympe node in his neck. The Dr. said he would need radiation and Chemo. I think it will start around April 12th. I have found reading the posts very helpful.

Pumakitty

handl1983 said:

HANG TOUGH!
When my husband was diagnosed, I remember sitting in the Dr's office, very calmly asking what stage the cancer was. He told us "stage IV" It was pretty scary, but then he went on to say how many great treatments are out there now. It has been a very long,hard year for us, and I wont lie to you-it will not be fun! The best advice I can offer you as a care giver is that you are your own advocate. Do not settle for something if you feel it isnt right- ask questions!!!! That is why the Dr's are there! The Dr's, P.A.'s and nurses do this every day and sometimes they forget we are new to this, and don't understand what they are talking about! Ask them to dummy it up for you!! My heart and prayers go out to you! I see that you began this in December- how is everything going now? I wish I had known about this sight before now, as I am sure it would have helped immensely!! May God be with you during this time!!!
lori

Just found out
I just found out my dad has IV tongue cancer. Is has spread to one lympe node in his neck. The Dr. said he would need radiation and Chemo. I think it will start around April 12th. I have found reading the posts very helpful.

Pumakitty

handl1983 said:

HANG TOUGH!
When my husband was diagnosed, I remember sitting in the Dr's office, very calmly asking what stage the cancer was. He told us "stage IV" It was pretty scary, but then he went on to say how many great treatments are out there now. It has been a very long,hard year for us, and I wont lie to you-it will not be fun! The best advice I can offer you as a care giver is that you are your own advocate. Do not settle for something if you feel it isnt right- ask questions!!!! That is why the Dr's are there! The Dr's, P.A.'s and nurses do this every day and sometimes they forget we are new to this, and don't understand what they are talking about! Ask them to dummy it up for you!! My heart and prayers go out to you! I see that you began this in December- how is everything going now? I wish I had known about this sight before now, as I am sure it would have helped immensely!! May God be with you during this time!!!
lori

Just found out
I just found out my dad has IV tongue cancer. Is has spread to one lympe node in his neck. The Dr. said he would need radiation and Chemo. I think it will start around April 12th. I have found reading the posts very helpful.

stevenl

Pumakitty said:

Just found out
I just found out my dad has IV tongue cancer. Is has spread to one lympe node in his neck. The Dr. said he would need radiation and Chemo. I think it will start around April 12th. I have found reading the posts very helpful.

stage IV
Hi Puma,

Glad to see you found your way here. There is a lot of good help and answers here. Sorry
your father has been diagnosed with this. I was dx Jan.15 with SCC stage IV,with right tonsil as the primary. I have 8 radiation treatments left and I am doing pretty well.
Just want you and him to know you are not alone. If you have questions ask them and the people here will help you. There are folks here that have had the same dx and are survivors.

Best Wishes,
Steve

Pumakitty

stevenl said:

stage IV
Hi Puma,

Glad to see you found your way here. There is a lot of good help and answers here. Sorry
your father has been diagnosed with this. I was dx Jan.15 with SCC stage IV,with right tonsil as the primary. I have 8 radiation treatments left and I am doing pretty well.
Just want you and him to know you are not alone. If you have questions ask them and the people here will help you. There are folks here that have had the same dx and are survivors.

Best Wishes,
Steve

Thank you
Steve,

Thank you for your message. It is all really scary right now. Did you have sugery to remove the lympe node. I am really worried that the outcome will not be good. When we asked the Ear, Nose and Throat Dr. he acted like it was not good. Have the radiation treatments been rough and did you get a feeding tube. Sorry to ask so many questions.

Kathy

nicki74

Pumakitty said:

Thank you
Steve,

Thank you for your message. It is all really scary right now. Did you have sugery to remove the lympe node. I am really worried that the outcome will not be good. When we asked the Ear, Nose and Throat Dr. he acted like it was not good. Have the radiation treatments been rough and did you get a feeding tube. Sorry to ask so many questions.

Kathy

Puma
hi, my father was diagnosed with stage iv of tongue cancer on february 1 of this year.. he got a second opinion and met with a team of doctors at Rush on february 17.. so far he has had teeth pulled, feeding tube and trach put in, and had one round of induction chemo and will go in for another the day after Easter, so this coming up Monday! my father looks great and he said he has has never felt better.. as im sure you know, it can be very painful for them to talk and eat, i assume your father lost weight? this is a great website! be positive.. with all the treatments available now, Cancer is no longer a death sentence, as someone once said, i believe on this website.. just be there for your father, keep him positive, it is going to be a journey, but well worth it.. please keep us posted.. we are all here for you.. take care and in my prayers..

Pumakitty

nicki74 said:

Puma
hi, my father was diagnosed with stage iv of tongue cancer on february 1 of this year.. he got a second opinion and met with a team of doctors at Rush on february 17.. so far he has had teeth pulled, feeding tube and trach put in, and had one round of induction chemo and will go in for another the day after Easter, so this coming up Monday! my father looks great and he said he has has never felt better.. as im sure you know, it can be very painful for them to talk and eat, i assume your father lost weight? this is a great website! be positive.. with all the treatments available now, Cancer is no longer a death sentence, as someone once said, i believe on this website.. just be there for your father, keep him positive, it is going to be a journey, but well worth it.. please keep us posted.. we are all here for you.. take care and in my prayers..

Thank you
My dad has had some trouble with eating, but since changing his diet it has been better. I do not know yet what his treatment plan will be. My mone worry is being able to care for him and work at the same time. My mom is healthy, but it would be to much for her to care for him and she can not drive. How much radiation does your dad need and how much chemo? Did he have surgery? Why did they do a trach?

nicki74

Pumakitty said:

Thank you
My dad has had some trouble with eating, but since changing his diet it has been better. I do not know yet what his treatment plan will be. My mone worry is being able to care for him and work at the same time. My mom is healthy, but it would be to much for her to care for him and she can not drive. How much radiation does your dad need and how much chemo? Did he have surgery? Why did they do a trach?

pumakitty
hi, my mom is the main caregiver for my dad, she didn't work, he was the only income for the two of them, eeek.. his treatment plan is two rounds of induction chemo, then 7 weeks/5 days a week chemo/rads and my mother does not drive, so getting them to the hospital during those 7 weeks will be interesting.. lol.. but i did call the American Cancer Society, and in some areas they do help patients with transportation to and from treatments... the doctors said that his tongue will swell up even more during radiation, so the trach was just for precaution... please ask me any questions and i can help you out as much as i can.. he did not want the surgery, that was also an option.. they would have to remove all of his tongue, voicebox and a good portion of his jaw.. so we opted for the chemo/rads... what city and state are you in and did your dad get a second opinion, is he working with a team of doctors?

nicki74

nicki74 said:

pumakitty
hi, my mom is the main caregiver for my dad, she didn't work, he was the only income for the two of them, eeek.. his treatment plan is two rounds of induction chemo, then 7 weeks/5 days a week chemo/rads and my mother does not drive, so getting them to the hospital during those 7 weeks will be interesting.. lol.. but i did call the American Cancer Society, and in some areas they do help patients with transportation to and from treatments... the doctors said that his tongue will swell up even more during radiation, so the trach was just for precaution... please ask me any questions and i can help you out as much as i can.. he did not want the surgery, that was also an option.. they would have to remove all of his tongue, voicebox and a good portion of his jaw.. so we opted for the chemo/rads... what city and state are you in and did your dad get a second opinion, is he working with a team of doctors?

update
hello all, well my dad goes in for his second round of induction chemo tomorrow, he will be in the hospital for approximately five days.. he did pretty well with the first round, although i will say that he has been pretty tired the last few days, but that could also be from maybe trying to do so much since the weather was so nice.. well again, id like to thank everyone for all the support and information that i have obtained from this site.. i will keep you posted..

please keep my dad in your prayers and i hope everyone had a great Easter!

catya88

nicki74 said:

update
hello all, well my dad goes in for his second round of induction chemo tomorrow, he will be in the hospital for approximately five days.. he did pretty well with the first round, although i will say that he has been pretty tired the last few days, but that could also be from maybe trying to do so much since the weather was so nice.. well again, id like to thank everyone for all the support and information that i have obtained from this site.. i will keep you posted..

please keep my dad in your prayers and i hope everyone had a great Easter!

Update on Tim
Tim continues to do well eating. He's dissapointed he hasn't gained much weight back but he's eating as much as his stomach will allow. He still does one can in the morning.

Kent, his visit with the radiologist went wonderful, the doctor was so giddy after looking at his throat, he told Tim, you were such a mess when you got here, I can not believe how clean your throat is! Still, his PET Scan is April 12 and then follow up with the ENT an radiologist the following week. I know we still have more road to journey down.

His fatigue comes and goes but he's upset that he doesn't seem to have much energy, any thoughts on that? Anyone??

PumaKitty, my boyfriend was diagnosed back in December with stage iv BOT and throat cancer. Read everything you can and ask lots of questions with this group, they have been so helpful and supportive to me. Thanks to this group, I knew about the magic mouthwash before Tim needed it and I knew about the mucas, yuck! The papya juice really helped with that. TIm's worst pain didn't hit until 3 days after treatment but remember, everyone is different.

Nicki good to hear about your dad. As you've read Tim is up and down with fatigue and he's finished treatment!

Love to all - Cathy

Pumakitty

nicki74 said:

pumakitty
hi, my mom is the main caregiver for my dad, she didn't work, he was the only income for the two of them, eeek.. his treatment plan is two rounds of induction chemo, then 7 weeks/5 days a week chemo/rads and my mother does not drive, so getting them to the hospital during those 7 weeks will be interesting.. lol.. but i did call the American Cancer Society, and in some areas they do help patients with transportation to and from treatments... the doctors said that his tongue will swell up even more during radiation, so the trach was just for precaution... please ask me any questions and i can help you out as much as i can.. he did not want the surgery, that was also an option.. they would have to remove all of his tongue, voicebox and a good portion of his jaw.. so we opted for the chemo/rads... what city and state are you in and did your dad get a second opinion, is he working with a team of doctors?

NICKI74
Hi,

We are in the Winchester, VA area. We are only about 15 minutes from the hospitol. My mine concern is not so much taking him to the treatments, but leaving them to go to work at night. I am not sure how much both physically and mentally my mom can take. I know that I can take some time off work to care for him, but it is limited to 12 weeks. My dad did not want to do the surgery and if he did he would still have to do the chemo and rads after. How much did they tell you about how bad the side effects would be. And when they would start. They have never mentioned induction chemo to us at this point. Why do they do this.

Pumakitty

catya88 said:

Update on Tim
Tim continues to do well eating. He's dissapointed he hasn't gained much weight back but he's eating as much as his stomach will allow. He still does one can in the morning.

Kent, his visit with the radiologist went wonderful, the doctor was so giddy after looking at his throat, he told Tim, you were such a mess when you got here, I can not believe how clean your throat is! Still, his PET Scan is April 12 and then follow up with the ENT an radiologist the following week. I know we still have more road to journey down.

His fatigue comes and goes but he's upset that he doesn't seem to have much energy, any thoughts on that? Anyone??

PumaKitty, my boyfriend was diagnosed back in December with stage iv BOT and throat cancer. Read everything you can and ask lots of questions with this group, they have been so helpful and supportive to me. Thanks to this group, I knew about the magic mouthwash before Tim needed it and I knew about the mucas, yuck! The papya juice really helped with that. TIm's worst pain didn't hit until 3 days after treatment but remember, everyone is different.

Nicki good to hear about your dad. As you've read Tim is up and down with fatigue and he's finished treatment!

Love to all - Cathy

Cathy
I am glad to hear the Tim is doing better. Did Tim need a lot of care during his treatment. The reason I am asking is trying to determine if I will need to be home with him through the whole treatment time or if I can still go to work at night. My dad is already using the mouth wash. I can not remember how much Chemo and Rad did Tim have. How much pain medication did he need?