head and neck cancer stage 4

itybitty1
itybitty1 Member Posts: 12
edited March 2014 in Head and Neck Cancer #1
Is there any one here that can give me some insight as to what they are about to do to me. I see the main dr on June 2nd for a consultation. which will be exactly 2 months sense I found out that I had cancer under the tongue( exactly in the middle of my tongue) is where the tumor is. One dr already did a biopsy, and thats when I found out that it was in the 4th stage. Why are they taking so long. I have a swollen gland on the left side of my neck, this really worries the heck out of me plus 4th stage.
I just wish I had someone that has this that can at least give me idea. Thanks itybitty1
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Comments

  • wboaz
    wboaz Member Posts: 48
    Well, my cancer was of the tonsil but I also had a large lymph gland tumor in the neck. I don't remember everything but here is part of an emailI sent a couple years back when the treatment was happening.

    "In September I thought I was getting swollen glands in my neck with the germ-balls returning to school. After three weeks I hadn't gotten sick and the glands hadn't gone down. I went in to my PCP and he referred me to an Ear Nose Throat guy who didn't know what it was either but had a CT scan done and then a needle biopsy. Let me tell you, a needle stuck into your neck right next to your jugular vein isn't very comfortable. Anyway, the result wasn't positive for cancer but as I had a 4CM x 2.5 CM mass next to my carotid artery I was referred to a surgeon. The surgeon removed both my tonsils (the most pain ever in my life) and did a dissection of my left nect to remove the lymph glands there. I came back positive for Cancer of the Tonsil. While technicaly Stage 4 my prognosis is pretty good. The other way of classifying this was T-1,L-2,M-0 or 1 tumor and 2 lymph glands as positive.

    Anyway, I am now going through radiation treatments to my neck and chest daily, chemo weekly and have had several other little procedures. The radiation has killed all of my taste buds (except some bitter) so everything tastes terrible. That plus my throat being very sore got me to go in and have a G-tube installed on Tuesday so that once the Home health care services folks feel like coming over and bringing me my food I will be able to feed foor and meds directly into my stomach without having to swallow."

    My advise a couple years later. Go see your dentist and get a complete cleaning and any outstanding work completed. I haven't lost any teeth through this whole thing but many people do. Let everyone know that you want to save your teeth if possible. Also, get some flouride rinse from your dentist. The stuff they give you to rinse with after a cleaning. Rinse with it after every tooth brushing. Also, get the softest toothbrush you can find and some Biotene toothpaste and mouthwash.

    Get your stomach tube put in as soon as possible. I waited until I was several weeks into the treatment as I thought I could swallow past any pain. Pain wasn't the problem, the terrible bitter taste that everything had made it impossible for me to eat food. I lost 20 pounds in 2 weeks.

    The radiation will cause a lot of pain. Watch out about the Hydrocodone though, it has a lot of tylenol in it which can damage your liver. Once you start to get close to the maximum dose of 5 grams per day of tylenol ask to switch over to oxycodone (the liquid) you can inject it into your stomach tube and it works very well. It is very addictive though so be prepared to wean yourself off of it at the end (about a month after the radiation ends).

    I hope this helps.
  • BugHunter
    BugHunter Member Posts: 152
    First thing I would tell you......RELAX. This is what it is but staging in H&N cancer is tumor size related, not the instant death sentence you are fearing. My tumor was 6cm and wrapped around my carotid.(main was Rt tonsil). I had 8 weeks of chemo two weeks off followed by 6.5 weeks of chemo/radiation. I am 14 months post treatment and life is slowly getting back to "normal"

    Hope all goes well, let us know!
    BILL
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    I don't blame you a bit (:)) for being worried. All it takes is an announcement of cancer and we pretty much go into shock, don't we? When you add that Stage IV diagnosis, it is like they turned up the amperage a bit, and rightfully so.

    I am a head/neck cancer survivor, one who had a soreness on his tongue that lead to replacement of half the tongue with muscle and tissue from the left arm. That does not mean that this will happen to you.

    Often, doctors examine what is happening and decide that they do not need to do all of that. I have met very few people who have gone that whole nine yards. Many times, radiation and/or chemotherapy are determined to be the best course of action, and they work a great deal of the time without major surgery, or doctors wouldn't recommend that course of action.

    As alluded to by other respondents, head and neck cancer is NOT a death sentence, although it can be if you do not take it seriously, obviously. On the other hand, the Stage IV designation DOES mean more than tumor size, as I'm sure you've been advised.

    In my case, I had the tumor on the tongue, and when they biopsied they found more in the lymph nodes in my neck. Sounds like you are in a similar boat. Mine was Stage III, perhaps because the tumor was just a tad smaller? Who knows? In any event, I OPTED for the removal, because I wanted to be rid of the stuff forever. Today, I am not so sure all of the time that this was the best answer, but most of the time, I am comfortable with it. You can read about my shenanigans on my web page on this site. It will save me (and the world) from listening to me again (:)) and might give you some idea of what may lie ahead.

    For sure, you know that you can count on the people in here to provide support. You know, more importantly, that is a beatable thing. There are some challenges, but you are up for them.

    I happen to enjoy life and consider the cancer to be an annoyance. It is a great annoyance at times, but an annoyance nonetheless. If I can live through mosquitoes in the summer, I can live through this as well.

    You can too!

    Take care,

    Joe
  • victor53
    victor53 Member Posts: 97
    I too have been passed over for 2 months.
    Get to a dentist fast so he can see what teeth need to come out and clean and fix what he can save. And he can send you to an oral surgeon if nessisary explain your urgency to secretaries who try to give you appointments a month later.
    What test have they done? you should have had a ctscan and a chest xray and a pet scan.
    Ask for copies of all your records and scans.
    Get a second opinion or they are called reviews by a cancer center. I called Mass general on a moday and got a second opinion review in front of several doctors on a friday 4 days later.
    I still hadnt gotten my first opinion from my doctors in 7 weeks.
    When i realized how i was just being left to fall thru the cracks. I started showing up with a question everyday at their office. Started that 1 week ago now im getting what i asked for in fact they are rushing me. I was a non confrontational guy who had to learn fast how to the SQUEEKLY WHEEL.
    Have they dicideed on a treatment plan yet?
    Given you any kind of time frame.?

    Where are you from?
    Are you being seen at a hospital cancer center?
    Have you talked to a hospital social worker?
    I just went thru this now they are rushing me starting this coming tues.
    Best of luck Victor Brown
  • wboaz
    wboaz Member Posts: 48
    victor53 said:

    I too have been passed over for 2 months.
    Get to a dentist fast so he can see what teeth need to come out and clean and fix what he can save. And he can send you to an oral surgeon if nessisary explain your urgency to secretaries who try to give you appointments a month later.
    What test have they done? you should have had a ctscan and a chest xray and a pet scan.
    Ask for copies of all your records and scans.
    Get a second opinion or they are called reviews by a cancer center. I called Mass general on a moday and got a second opinion review in front of several doctors on a friday 4 days later.
    I still hadnt gotten my first opinion from my doctors in 7 weeks.
    When i realized how i was just being left to fall thru the cracks. I started showing up with a question everyday at their office. Started that 1 week ago now im getting what i asked for in fact they are rushing me. I was a non confrontational guy who had to learn fast how to the SQUEEKLY WHEEL.
    Have they dicideed on a treatment plan yet?
    Given you any kind of time frame.?

    Where are you from?
    Are you being seen at a hospital cancer center?
    Have you talked to a hospital social worker?
    I just went thru this now they are rushing me starting this coming tues.
    Best of luck Victor Brown

    Yes Victor is right you have to ask lots of questions. Write down questions as soon as you thing of them and take the list of questions with you. Take another person with you to every doctor visit. A spouse or good friend that can sit with you through exams and can also listen to answers with you. It is a ton to absorb and having a second person to listen and ask questions is a big help. Ask for everything you want, the worst they can say is no. Suggest things you have read about or heard from others, they may not of heard of it before. Again, the worst they can say is no, and maybe a good reason or explanation will follow.

    They will say "Come back in a week for results" but ask for the next day. Many appointments will be scheduled out a week or so but asking for sooner can't hurt.

    Good luck.
  • Mary53
    Mary53 Member Posts: 7
    wboaz said:

    Yes Victor is right you have to ask lots of questions. Write down questions as soon as you thing of them and take the list of questions with you. Take another person with you to every doctor visit. A spouse or good friend that can sit with you through exams and can also listen to answers with you. It is a ton to absorb and having a second person to listen and ask questions is a big help. Ask for everything you want, the worst they can say is no. Suggest things you have read about or heard from others, they may not of heard of it before. Again, the worst they can say is no, and maybe a good reason or explanation will follow.

    They will say "Come back in a week for results" but ask for the next day. Many appointments will be scheduled out a week or so but asking for sooner can't hurt.

    Good luck.

    I had cancer at the base of my tongue. The tumor was large and they wouldn't operate because I could lose my voicebox. I was treated with chemo every 3 weeks (3 times) and 35 rounds of radiation. I am an 8 month cancer survivor.
  • itybitty1
    itybitty1 Member Posts: 12
    wboaz said:

    Well, my cancer was of the tonsil but I also had a large lymph gland tumor in the neck. I don't remember everything but here is part of an emailI sent a couple years back when the treatment was happening.

    "In September I thought I was getting swollen glands in my neck with the germ-balls returning to school. After three weeks I hadn't gotten sick and the glands hadn't gone down. I went in to my PCP and he referred me to an Ear Nose Throat guy who didn't know what it was either but had a CT scan done and then a needle biopsy. Let me tell you, a needle stuck into your neck right next to your jugular vein isn't very comfortable. Anyway, the result wasn't positive for cancer but as I had a 4CM x 2.5 CM mass next to my carotid artery I was referred to a surgeon. The surgeon removed both my tonsils (the most pain ever in my life) and did a dissection of my left nect to remove the lymph glands there. I came back positive for Cancer of the Tonsil. While technicaly Stage 4 my prognosis is pretty good. The other way of classifying this was T-1,L-2,M-0 or 1 tumor and 2 lymph glands as positive.

    Anyway, I am now going through radiation treatments to my neck and chest daily, chemo weekly and have had several other little procedures. The radiation has killed all of my taste buds (except some bitter) so everything tastes terrible. That plus my throat being very sore got me to go in and have a G-tube installed on Tuesday so that once the Home health care services folks feel like coming over and bringing me my food I will be able to feed foor and meds directly into my stomach without having to swallow."

    My advise a couple years later. Go see your dentist and get a complete cleaning and any outstanding work completed. I haven't lost any teeth through this whole thing but many people do. Let everyone know that you want to save your teeth if possible. Also, get some flouride rinse from your dentist. The stuff they give you to rinse with after a cleaning. Rinse with it after every tooth brushing. Also, get the softest toothbrush you can find and some Biotene toothpaste and mouthwash.

    Get your stomach tube put in as soon as possible. I waited until I was several weeks into the treatment as I thought I could swallow past any pain. Pain wasn't the problem, the terrible bitter taste that everything had made it impossible for me to eat food. I lost 20 pounds in 2 weeks.

    The radiation will cause a lot of pain. Watch out about the Hydrocodone though, it has a lot of tylenol in it which can damage your liver. Once you start to get close to the maximum dose of 5 grams per day of tylenol ask to switch over to oxycodone (the liquid) you can inject it into your stomach tube and it works very well. It is very addictive though so be prepared to wean yourself off of it at the end (about a month after the radiation ends).

    I hope this helps.

    Thanks alot for it sure sounds to me like God was surely with you after being told it was not cancer and then running into just the opposite.I will keep it in mind to have a tube put in. I think they will do this right off any how because I am only 120lbs 5'4" I really can not afford to lose any weight. I have you in my prayers and I really want to thank you for sharing with me. You have been through so much I am 60 years old and I'm guessing that you may be in college and have your whole life ahead of you god bless.itybitty1
  • itybitty1
    itybitty1 Member Posts: 12
    victor53 said:

    I too have been passed over for 2 months.
    Get to a dentist fast so he can see what teeth need to come out and clean and fix what he can save. And he can send you to an oral surgeon if nessisary explain your urgency to secretaries who try to give you appointments a month later.
    What test have they done? you should have had a ctscan and a chest xray and a pet scan.
    Ask for copies of all your records and scans.
    Get a second opinion or they are called reviews by a cancer center. I called Mass general on a moday and got a second opinion review in front of several doctors on a friday 4 days later.
    I still hadnt gotten my first opinion from my doctors in 7 weeks.
    When i realized how i was just being left to fall thru the cracks. I started showing up with a question everyday at their office. Started that 1 week ago now im getting what i asked for in fact they are rushing me. I was a non confrontational guy who had to learn fast how to the SQUEEKLY WHEEL.
    Have they dicideed on a treatment plan yet?
    Given you any kind of time frame.?

    Where are you from?
    Are you being seen at a hospital cancer center?
    Have you talked to a hospital social worker?
    I just went thru this now they are rushing me starting this coming tues.
    Best of luck Victor Brown

    Victor, It will be 2months on June2nd,When I go to Seattle WA because Portland,OR would not take my medical seems funny that I know people with my insurance that got in. Oh well, I saw the Dr that found the cancer, he did a biopsy right the mintue that I meet him and I thank god he did. Well I had been researching and saw this same dr again on may 21st and I think I asked too many questions or I hurt his feelings because The Dr I am seeing in Seattle I don't know him so I did a web search he has only been a dr for 2years. I metioned this to the other dr , and he said oh he has only been a DR a year longer than me. Talk about putting your foot in your mouth. Here I was thanking him for having found this cancer and then said something like that, I hadn't even bothered to check him out. Oh well when I went to leave he didn't have me make an appointment just wants me to keep in touch call him and let him know how things are going. Thought I would just mention this since I wouldn't hurt any one for all the money in the world. Thanks for your help I will keep in touch. I feel very fortunate to be able to share with you and wboz, and mary. You are all very strong people. I do know how it feels to be pushed around and made to feel like oh this isn't nothing, we might get it all and might not. I was wordering about one thing though. I have run into some of the most nasty receptionist in my life that work for drs that handle cancer patients. Has any one had the same happen to them. too bad they treat you nasty for no reason they don't belong working in this type of office. Oh well!! just a thought thanks again will keep in touch. Oh we live in washington.
  • itybitty1
    itybitty1 Member Posts: 12
    BugHunter said:

    First thing I would tell you......RELAX. This is what it is but staging in H&N cancer is tumor size related, not the instant death sentence you are fearing. My tumor was 6cm and wrapped around my carotid.(main was Rt tonsil). I had 8 weeks of chemo two weeks off followed by 6.5 weeks of chemo/radiation. I am 14 months post treatment and life is slowly getting back to "normal"

    Hope all goes well, let us know!
    BILL

    Bill my cancer is right under the tongue exactly in the middle where the saliva glands are they are already talking a lot of facial reconstruction after surgery because they think it is in the gums all the way around to the jaw bone on the left side and skin crafting so far I have not run into any one that had to get plastic surgery after the cancer is taken care of. Keep my fingers crossed and any way thank God if they manage to stop the cancer. I have a large lymp node in my neck and a mass around my tonsils all on the left side. I think the lymp node has it at bay untill they cut me. I am not all nerved up at the prospect but every day counts the mintue that they took the biopsy of the tumor under my tongue we all know that.I really feel lucky under the circumstances that it is treatable and so many of you have bravely gone through one hell of a lot of pain another thing, God gave us an incrediable mind where after the pain is gone we really don't remember just how bad it was or most of our pain.I'm sorry I didn't get back to you sooner as I had so many people answer me and I want to answer all as I got them. How are you doing with yours at the 14th month. I really wish you the best I thank you for sharing with me I know all of these head and neck cancer seem to affect everyone differently. I didn't even know about such a cancer untill I was diag. Why don't they talk more about it? Talk and later and thanks,itybitty1
  • itybitty1
    itybitty1 Member Posts: 12
    Mary53 said:

    I had cancer at the base of my tongue. The tumor was large and they wouldn't operate because I could lose my voicebox. I was treated with chemo every 3 weeks (3 times) and 35 rounds of radiation. I am an 8 month cancer survivor.

    Thanks for answering Mary. Where is the base of your tongue? I just keep saying in the front under my tongue exactly in the middle between the two saliva glands? Is the base in the back of the mouth? I will keep in touch. Hope that you are doing well and thank you so much for sharing. I go to seattle next monday and then I hope that I have a date to start so I can fight this thing too. Thanks I will answer you anytime, if you feel like talking I know my spouse loves me but he can not talk objectively, and It helps to speak with people that have the same thing and share as you go along. Thanks again,itbitty1
  • itybitty1
    itybitty1 Member Posts: 12

    I don't blame you a bit (:)) for being worried. All it takes is an announcement of cancer and we pretty much go into shock, don't we? When you add that Stage IV diagnosis, it is like they turned up the amperage a bit, and rightfully so.

    I am a head/neck cancer survivor, one who had a soreness on his tongue that lead to replacement of half the tongue with muscle and tissue from the left arm. That does not mean that this will happen to you.

    Often, doctors examine what is happening and decide that they do not need to do all of that. I have met very few people who have gone that whole nine yards. Many times, radiation and/or chemotherapy are determined to be the best course of action, and they work a great deal of the time without major surgery, or doctors wouldn't recommend that course of action.

    As alluded to by other respondents, head and neck cancer is NOT a death sentence, although it can be if you do not take it seriously, obviously. On the other hand, the Stage IV designation DOES mean more than tumor size, as I'm sure you've been advised.

    In my case, I had the tumor on the tongue, and when they biopsied they found more in the lymph nodes in my neck. Sounds like you are in a similar boat. Mine was Stage III, perhaps because the tumor was just a tad smaller? Who knows? In any event, I OPTED for the removal, because I wanted to be rid of the stuff forever. Today, I am not so sure all of the time that this was the best answer, but most of the time, I am comfortable with it. You can read about my shenanigans on my web page on this site. It will save me (and the world) from listening to me again (:)) and might give you some idea of what may lie ahead.

    For sure, you know that you can count on the people in here to provide support. You know, more importantly, that is a beatable thing. There are some challenges, but you are up for them.

    I happen to enjoy life and consider the cancer to be an annoyance. It is a great annoyance at times, but an annoyance nonetheless. If I can live through mosquitoes in the summer, I can live through this as well.

    You can too!

    Take care,

    Joe

    Boy thanks so much Joe you truly have been put through the ringer. You also reinforced my belief in the bodys ability to heal. I may also go through skin graft on my hip and bone reconstruction. I told my husband that I was going to make little harem mask to hide my jaw until I was through chemo/radiation soo)) I don't scare the kids half to death. I was really touched by your letter alot of people couldn't make it. They may not do all of it to me, I will know more when I come back from seattle and then I will write more and I want to send this and take time to go into your site I hope you are well. Thanks again itybitty1
  • wboaz
    wboaz Member Posts: 48
    itybitty1 said:

    Victor, It will be 2months on June2nd,When I go to Seattle WA because Portland,OR would not take my medical seems funny that I know people with my insurance that got in. Oh well, I saw the Dr that found the cancer, he did a biopsy right the mintue that I meet him and I thank god he did. Well I had been researching and saw this same dr again on may 21st and I think I asked too many questions or I hurt his feelings because The Dr I am seeing in Seattle I don't know him so I did a web search he has only been a dr for 2years. I metioned this to the other dr , and he said oh he has only been a DR a year longer than me. Talk about putting your foot in your mouth. Here I was thanking him for having found this cancer and then said something like that, I hadn't even bothered to check him out. Oh well when I went to leave he didn't have me make an appointment just wants me to keep in touch call him and let him know how things are going. Thought I would just mention this since I wouldn't hurt any one for all the money in the world. Thanks for your help I will keep in touch. I feel very fortunate to be able to share with you and wboz, and mary. You are all very strong people. I do know how it feels to be pushed around and made to feel like oh this isn't nothing, we might get it all and might not. I was wordering about one thing though. I have run into some of the most nasty receptionist in my life that work for drs that handle cancer patients. Has any one had the same happen to them. too bad they treat you nasty for no reason they don't belong working in this type of office. Oh well!! just a thought thanks again will keep in touch. Oh we live in washington.

    Call OHSU in Portland and see if they will take your insurance. If so, see if you can get in to see Dr. Peter Andersen, 503.494.5355. He is the head of the Head & Neck sugery area there. A very nice guy and his staff was always great to me as well.

    Oh, I turn 50 this year and that will be 3 years from my diagnosis. :)
  • Mary53
    Mary53 Member Posts: 7
    itybitty1 said:

    Thanks for answering Mary. Where is the base of your tongue? I just keep saying in the front under my tongue exactly in the middle between the two saliva glands? Is the base in the back of the mouth? I will keep in touch. Hope that you are doing well and thank you so much for sharing. I go to seattle next monday and then I hope that I have a date to start so I can fight this thing too. Thanks I will answer you anytime, if you feel like talking I know my spouse loves me but he can not talk objectively, and It helps to speak with people that have the same thing and share as you go along. Thanks again,itbitty1

    The very back of your tongue is called the base and is near your voice box, yes at the back.....mine was to the right side. It had one lymph node strangled and the other node had cancer.I pray all will go well for you.Take it a day at a time and try to keep a positive attitude no matter what and you will get through.God Bless.
  • Mary53
    Mary53 Member Posts: 7
    itybitty1 said:

    Victor, It will be 2months on June2nd,When I go to Seattle WA because Portland,OR would not take my medical seems funny that I know people with my insurance that got in. Oh well, I saw the Dr that found the cancer, he did a biopsy right the mintue that I meet him and I thank god he did. Well I had been researching and saw this same dr again on may 21st and I think I asked too many questions or I hurt his feelings because The Dr I am seeing in Seattle I don't know him so I did a web search he has only been a dr for 2years. I metioned this to the other dr , and he said oh he has only been a DR a year longer than me. Talk about putting your foot in your mouth. Here I was thanking him for having found this cancer and then said something like that, I hadn't even bothered to check him out. Oh well when I went to leave he didn't have me make an appointment just wants me to keep in touch call him and let him know how things are going. Thought I would just mention this since I wouldn't hurt any one for all the money in the world. Thanks for your help I will keep in touch. I feel very fortunate to be able to share with you and wboz, and mary. You are all very strong people. I do know how it feels to be pushed around and made to feel like oh this isn't nothing, we might get it all and might not. I was wordering about one thing though. I have run into some of the most nasty receptionist in my life that work for drs that handle cancer patients. Has any one had the same happen to them. too bad they treat you nasty for no reason they don't belong working in this type of office. Oh well!! just a thought thanks again will keep in touch. Oh we live in washington.

    My experience with the cancer receptionists,nurses and Drs were all very positive...they were very caring and thoughtful and this really helps when your feeling very bad.They were even concerned for my husband who took my diagnosis very hard but was the best care giver I could have ever had.I hope you start getting some nice recptionists,nurses and Drs. to see you through.
  • DocSwill
    DocSwill Member Posts: 1
    I am a stage 4 tongue cancer survivor (squamous carcinoma of the left later side) I began this ordeal in Dec of 06. Surgery, Radiation, and Chemo in 07. Still on a feeding tube. I speak well but can't eat solids yet, but I'm currently back at MD Anderson having an adjustment that might change that.

    My advice would be: the quicker you jump on this the better. Be Proactive. I came all the way from CA to MDAnderson to find the BEST treatment for me. Do your research find the best doctors you feel the most comfortable with and don't sit around. The longer you wait the more it's still growing.

    I've been through hell and back and still kickin. Stay strong and keep a clear head.

    I maintain a blog of all my experiences you might want to check it out if you have time: http://beyondtheglassdoor.blogspot.com/

    I'm not a Doctor it's just a screen name BTW. I wish you the best. If I can answer any questions to help let me know.

    Peace B
  • jesus gaspar
    jesus gaspar Member Posts: 2
    Mary53 said:

    I had cancer at the base of my tongue. The tumor was large and they wouldn't operate because I could lose my voicebox. I was treated with chemo every 3 weeks (3 times) and 35 rounds of radiation. I am an 8 month cancer survivor.

    Have you been able to eat yet! Had cancer at base of tongue
    Does anyone know how long it will take for me to be able to eat and drink without the Peg Tube? My last radiation was on 31 May 2008. I do have my taste buds, but no saliva! I wonder If I lost my saliva glands?

    Are you able to eat or drink without the peg tube??
  • train-nut
    train-nut Member Posts: 101

    Have you been able to eat yet! Had cancer at base of tongue
    Does anyone know how long it will take for me to be able to eat and drink without the Peg Tube? My last radiation was on 31 May 2008. I do have my taste buds, but no saliva! I wonder If I lost my saliva glands?

    Are you able to eat or drink without the peg tube??

    PEG Tube
    Hello Jesus. We should get together and do a little trading...most of my saliva has returned but most of my taste buds are gone. Regarding your question...there is a wide range...you are 10 or so weeks post-treatment...drink as much as you can...suggest you try moist semi-solid foods...I had good success with dipping food in liquids; cake donuts in coffee, soft cookies without nuts in milk. Experiment: jelly sandwiches (without the crust), angel hair pasta, scrambled eggs, whatever interests you. Wean yourself off the tube over a period of time. The clinic or hospital you had your treatment at probably has a nutionist who can help. Listen to your body. I wish you good eaating and good health. Rich
  • Everyones Angel
    Everyones Angel Member Posts: 1
    God bless to all my husband
    God bless to all my husband has H&N stage 4, Got through that and got 100% cancerfree, then is now diagnosd with spinal met, cancer moved to bas of the skull so we are in round 2 of Radiation and chemo. He is very ill.
  • stevelfun
    stevelfun Member Posts: 17

    God bless to all my husband
    God bless to all my husband has H&N stage 4, Got through that and got 100% cancerfree, then is now diagnosd with spinal met, cancer moved to bas of the skull so we are in round 2 of Radiation and chemo. He is very ill.

    To everyone....
    I too was 'stage IV'...

    Interesting - I did research in every facet of my cancer 'journey'.

    My cancer - was stage IV primarily due to the 'size' of the cancer in my tongue, base of tongue, throat. Each cancer within a certain 'group' is staged differently. For example, Head and Neck cancers are staged differently than lymphomas which are different than colon cancers, etc...

    My heart goes out to you all (esp. EveryonesAngel and her husband).

    I was 'fortunate' in that the cancer was in very few lymph nodes microscopicly. Basically, I am hopeful that it did not spread. It, so far, does not look like it has spread.

    My PET scans came back looking good. However, a recent CT scan had some things on it they want to follow up on in 3 to 6 months. These things are things that they believe to be common problems with others that have been through my treatments and nothing to worry about. Scarring of the lungs from radiation, etc... The follow up scans will hopefully bear this out.

    Again, my thoughts a prayers with all.

    Keep the faith and hang tough.

    Best,
    Steve
  • Mary53
    Mary53 Member Posts: 7

    Have you been able to eat yet! Had cancer at base of tongue
    Does anyone know how long it will take for me to be able to eat and drink without the Peg Tube? My last radiation was on 31 May 2008. I do have my taste buds, but no saliva! I wonder If I lost my saliva glands?

    Are you able to eat or drink without the peg tube??

    Have you been able to eat
    It has been a year for me jesus gaspar and I still have the peg and can get very little bits of water,yogurt or things down. They are now talking about stretching my esophogus.