WILL I EVER EAT AGAIN????

survivor32t
survivor32t Member Posts: 14
edited March 2014 in Head and Neck Cancer #1
I have been reading so much on this wonderful website. I have been out of 8 weeks of radiation and 3 sessions of chemo for about 1 and 1/2 months now. I am so impatient and want to eat real food again. Does it really take a long time? I was treated for naso-phar. cancer. Right now I am living off of Ensure,water, and just recently a small amount of chicken broth. Mucus is terrible. Especially in the mornings when I wake up. Sometimes it gags me to the point I get sick on my stomach. Does anyone else have that problem also????
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Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #2
    I am not certain of the extent of naro-phar cancer. I had half my tongue replaced by part of my wrist...tongue and neck cancer, just about a year ago this month. (diagnose, matter of fact, just yesterday a year ago). You are already doing very well, with the chicken broth and the water, and, I assume, taking the ensure through your mouth. So I would say your prognosis for eating again, and eating what you want, is very good, indeed! The saliva thing (okay,mucus)is a bummer. It may never go away completely, but it does become very manageable. It does, mostly, go away. Early on, I couldn't even sleep for two hours at a time because of the waves of mucus...making it seem hard to breathe...but that is gone. I am not a doctor, but I would say you sound like you have a real good chance of getting through these inconveniences with flying colors. Better, in fact, than me. Hang in there. What they don't always make clear is that radiation and chemo can affect you long after the end of the sessions. A month and half is not unreasonable for some of those effects to be still occurring. If they will let you, one thing that worked for me pretty quickly was thin mashed potatos...like heaven when you haven't eaten...and then I would slowly add things to the potatoes to help them go down easier...but I do have a different situation...always check first. Yogurt...pudding...Anyway, it will all come back for you, it sounds like. Patience my friend! Best wishes.
  • survivor32t
    survivor32t Member Posts: 14
    #3
    soccerfreaks said:

    I am not certain of the extent of naro-phar cancer. I had half my tongue replaced by part of my wrist...tongue and neck cancer, just about a year ago this month. (diagnose, matter of fact, just yesterday a year ago). You are already doing very well, with the chicken broth and the water, and, I assume, taking the ensure through your mouth. So I would say your prognosis for eating again, and eating what you want, is very good, indeed! The saliva thing (okay,mucus)is a bummer. It may never go away completely, but it does become very manageable. It does, mostly, go away. Early on, I couldn't even sleep for two hours at a time because of the waves of mucus...making it seem hard to breathe...but that is gone. I am not a doctor, but I would say you sound like you have a real good chance of getting through these inconveniences with flying colors. Better, in fact, than me. Hang in there. What they don't always make clear is that radiation and chemo can affect you long after the end of the sessions. A month and half is not unreasonable for some of those effects to be still occurring. If they will let you, one thing that worked for me pretty quickly was thin mashed potatos...like heaven when you haven't eaten...and then I would slowly add things to the potatoes to help them go down easier...but I do have a different situation...always check first. Yogurt...pudding...Anyway, it will all come back for you, it sounds like. Patience my friend! Best wishes.

    Thank you so much. I am trying to be patient but sometimes it is hard. The mucos is worse than not being able to eat. My cancer did effect my tongue somewhat. It deviates to one side and my speech is off. But thank you for responding. Just reading about other people and what others have written on here it makes me really think. I am not as bad off as some. My prayers go out to everyone battleing any kind of cancer or disease. I am so glad this network is out for us to communicate and learn things. I have another question if anyone is able to answer...well..maybe two. Does anyone elses ears bother them from the chemo?? Mine make me feel like I am in a hole. And...does anyone still get sick to their stomache sometimes?? I will be fine all day and evening. But at night when I get ready to lay down, I get sick. Thank you and God Bless
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #4
    survivor32t said:

    Thank you so much. I am trying to be patient but sometimes it is hard. The mucos is worse than not being able to eat. My cancer did effect my tongue somewhat. It deviates to one side and my speech is off. But thank you for responding. Just reading about other people and what others have written on here it makes me really think. I am not as bad off as some. My prayers go out to everyone battleing any kind of cancer or disease. I am so glad this network is out for us to communicate and learn things. I have another question if anyone is able to answer...well..maybe two. Does anyone elses ears bother them from the chemo?? Mine make me feel like I am in a hole. And...does anyone still get sick to their stomache sometimes?? I will be fine all day and evening. But at night when I get ready to lay down, I get sick. Thank you and God Bless

    It's me again :)...don't about the ear ringing...and you don't give enough info re the chemo...but...the chemo is a cocktail that is different for everybody (or for every cancer, let's say)... mine, I didn't get it every day, but just every couple of weeks or so...but then it was in a bag the size of a football...and the next day I felt GREEEEAAAATTT!!! Because there was a steroid of some kind added. :). I was busy trying to do things around the house, almost bouncing off the walls...and THEN the steroids would wear off (about a day) and oh boy...three days of bona fide illness...so maybe there is some of that going on for you? Wish I could help. Again: be patient. That does go away.
  • survivor32t
    survivor32t Member Posts: 14
    #5
    soccerfreaks said:

    It's me again :)...don't about the ear ringing...and you don't give enough info re the chemo...but...the chemo is a cocktail that is different for everybody (or for every cancer, let's say)... mine, I didn't get it every day, but just every couple of weeks or so...but then it was in a bag the size of a football...and the next day I felt GREEEEAAAATTT!!! Because there was a steroid of some kind added. :). I was busy trying to do things around the house, almost bouncing off the walls...and THEN the steroids would wear off (about a day) and oh boy...three days of bona fide illness...so maybe there is some of that going on for you? Wish I could help. Again: be patient. That does go away.

    I went through 3 sessions of Cesplatin. The third session really did me in. My stomach is somewhat better now but I still get sick off and on sometimes. I had to take that steroid 1 month before my treatments started. It was wonderful. That was the only way I could keep any food down. My tumor sat on my brainstem pushing on my nausea nerve and I was sooooo very sick. Tomorrow 10/4/06, I go for a scan to see if I am in remission or not and I am so anxious and nervous...wish me luck because I do not know if I can take any bad news. Thank you again for writing and keep doing it. Thank you so much for the advice.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #6
    survivor32t said:

    I went through 3 sessions of Cesplatin. The third session really did me in. My stomach is somewhat better now but I still get sick off and on sometimes. I had to take that steroid 1 month before my treatments started. It was wonderful. That was the only way I could keep any food down. My tumor sat on my brainstem pushing on my nausea nerve and I was sooooo very sick. Tomorrow 10/4/06, I go for a scan to see if I am in remission or not and I am so anxious and nervous...wish me luck because I do not know if I can take any bad news. Thank you again for writing and keep doing it. Thank you so much for the advice.

    My best wishes are with you. A positive attitude is what you need. It is your best weapon against the disease. (Your doctors have all of the other weapons :))...I wish you the very best...walk tall, and be strong. Smile, laugh...you can make this a better place to live, all by yourself, for everyone you meet. And the world needs you. There is no reason on earth to be nervous...you are already a survivor...just insist that you will continue to be one. Take care, my friend.
  • survivor32t
    survivor32t Member Posts: 14
    #7
    soccerfreaks said:

    My best wishes are with you. A positive attitude is what you need. It is your best weapon against the disease. (Your doctors have all of the other weapons :))...I wish you the very best...walk tall, and be strong. Smile, laugh...you can make this a better place to live, all by yourself, for everyone you meet. And the world needs you. There is no reason on earth to be nervous...you are already a survivor...just insist that you will continue to be one. Take care, my friend.

    Yesterday I went through the dreded MRI.
    Today I got a call about the results. My tumor has shrunk and there are a few spots they want to monitor each month but it was fairly good news. I keep smiling no matter what and that gets me through every day. Thank you and my best wishes to everyone who has and will battle any type of cancer. Thank you for the encouragment and for replying. It really means alot.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #8
    survivor32t said:

    Yesterday I went through the dreded MRI.
    Today I got a call about the results. My tumor has shrunk and there are a few spots they want to monitor each month but it was fairly good news. I keep smiling no matter what and that gets me through every day. Thank you and my best wishes to everyone who has and will battle any type of cancer. Thank you for the encouragment and for replying. It really means alot.

    Awesome news! Congratulations. Keep smiling. Keep laughing! Keep living! Outstanding news!
  • rogerbfi
    rogerbfi Member Posts: 16
    #9
    Hi, my husband was diagnosed stage 4 advanced nasopharyngeal in October 2002. His treatment started in November, by Thanksgiving he could not eat anymore. After 3 times dehydrated in one week I insisted on feeding tube,Dec.21st. The mucous spit is huge! My husband had 38 radiation front back, both sides. Chemo at start in addition to rad. cisplatinum, but also Taxol, which I did not realize he was getting, and was alergic to. Almost killed him on Christmas Eve of that year. He has survived, and finally for about 2 months has not depended on a 90% liquid diet. ie ensure etc. He can eat foods that are wet, but not spicy in any way. Doctors tell us he has the worst effects of radiation treatment they have seen, so please don't think this is the norm. I have heard from many survivors of this and his is not the best experience to go by. We do however have some eating, nutrition advice. Yes, you will be able to eat,what, and how prepared is the question. My husband has been out of treatment from July 2003. He is permantently disabled as a result of the heavy radiation. Good luck in your search, this cancer did not seem so out there on top as it is now. I felt pretty helpless at the time.
  • thumper0001
    thumper0001 Member Posts: 7
    #10
    I had laryngeal ssc,T3, no lymph involvement. 35 radiation treatments, 1 shot centered on throat, 1 on each side, 3 chemo (cisplatin, 1 year chemo trial (xeloda tablet form). I finished treatment 06/05 and then started trial. For a couple of months eating was still a problem, started to get better after that, gradually. At about 4 months out began to have less swallowing problems. Today neck is still tight about where "Adams Apple" would be, this is scar tissue and I may loose a little of it but not much, eat about anything I want now. Always have drinks with me, especially when eating, have to be careful you don't try to swallow too much. Am out to 6 month check ups with rad Dr, 3 months with chemo Dr and 2 month scopes with ENT. Am going to be fitted Friday for hearing aids for both ears, hearing loss from chemo, this is not unusual, the numbness or tingling sensation in toes is beginning to fade as well. Mucus was a problem but it did get better. I now have sleep apnea from the radiation induced swelling in the throat, use a CPAP every night and do have a little problem with mucus build up in my throat in the mornings. At this point you are about 10 weeks out and that is when I began to notice subtle improvements. Keep a positive attitude, watch for any sign of depression and you will make it. I did, am back to work as the Facilities Superintendent of a 1 3/4 million square foot facility, usually run around the place about half the day. Not as good as I was a couple years ago but compared to a year ago am doing great. It gets better and if you are like me wondered if the treatments were going to get you instead of the cancer, it won't and you'll be pretty much yourself again.
    Good Luck
    Take Care,
    Dennis
  • survivor32t
    survivor32t Member Posts: 14
    #11
    rogerbfi said:

    Hi, my husband was diagnosed stage 4 advanced nasopharyngeal in October 2002. His treatment started in November, by Thanksgiving he could not eat anymore. After 3 times dehydrated in one week I insisted on feeding tube,Dec.21st. The mucous spit is huge! My husband had 38 radiation front back, both sides. Chemo at start in addition to rad. cisplatinum, but also Taxol, which I did not realize he was getting, and was alergic to. Almost killed him on Christmas Eve of that year. He has survived, and finally for about 2 months has not depended on a 90% liquid diet. ie ensure etc. He can eat foods that are wet, but not spicy in any way. Doctors tell us he has the worst effects of radiation treatment they have seen, so please don't think this is the norm. I have heard from many survivors of this and his is not the best experience to go by. We do however have some eating, nutrition advice. Yes, you will be able to eat,what, and how prepared is the question. My husband has been out of treatment from July 2003. He is permantently disabled as a result of the heavy radiation. Good luck in your search, this cancer did not seem so out there on top as it is now. I felt pretty helpless at the time.

    Thank you so much for sharing your experience. I am starting to slowly eat very little. One of two bites a day of something soft, such as noodles or mashed potatoes. I am sorry your husband is disabled. I am to a point because it took them 3 monthes just to diagnose me. I live in a very small town and the doctors here just had no idea. Each day I am trying to regain some of my strength and trying to eat. But radiation and chemo just messes your entire system up. Again thank you for responding and I will pray for you and your husband. It is so good that they have this network and people can share and interact with one another. Sometimes I feel so alone in this battle. But this sight lets me know that I am not. I wish they could just find a miracle cure for all types of cancer.
  • survivor32t
    survivor32t Member Posts: 14
    #12
    thumper0001 said:

    I had laryngeal ssc,T3, no lymph involvement. 35 radiation treatments, 1 shot centered on throat, 1 on each side, 3 chemo (cisplatin, 1 year chemo trial (xeloda tablet form). I finished treatment 06/05 and then started trial. For a couple of months eating was still a problem, started to get better after that, gradually. At about 4 months out began to have less swallowing problems. Today neck is still tight about where "Adams Apple" would be, this is scar tissue and I may loose a little of it but not much, eat about anything I want now. Always have drinks with me, especially when eating, have to be careful you don't try to swallow too much. Am out to 6 month check ups with rad Dr, 3 months with chemo Dr and 2 month scopes with ENT. Am going to be fitted Friday for hearing aids for both ears, hearing loss from chemo, this is not unusual, the numbness or tingling sensation in toes is beginning to fade as well. Mucus was a problem but it did get better. I now have sleep apnea from the radiation induced swelling in the throat, use a CPAP every night and do have a little problem with mucus build up in my throat in the mornings. At this point you are about 10 weeks out and that is when I began to notice subtle improvements. Keep a positive attitude, watch for any sign of depression and you will make it. I did, am back to work as the Facilities Superintendent of a 1 3/4 million square foot facility, usually run around the place about half the day. Not as good as I was a couple years ago but compared to a year ago am doing great. It gets better and if you are like me wondered if the treatments were going to get you instead of the cancer, it won't and you'll be pretty much yourself again.
    Good Luck
    Take Care,
    Dennis

    Thank you so much for responding with your story. It honestly gives me hope. I am starting to see some improvements. Not like I want them to be but at least it is something. Sometimes I do feel like I am getting depressed but my family , they are here and are a great support group and lift me back up. I am starting to eat very little. I am like a child having to learn how to eat all over again. Yes my ears are the same way. The said they may want to put tubes in but I would rather have the hearing aids. I have been poked on enough. So we will see how that goes. I am glad you are doing so much better. My job before I got sick , I was on my feet and very extremely active all the time. I was a Houseperson at a local hotel and was busy all the time. It is hard for me right now because I want to return to work so much. I really miss it. I hear people gripe and complain sometimes about having to work. I would much rather work than go through all this. Anyway I am rambling. You have given me inspiration and hope and it is greatly appreciated. Thank you and I will keep my spirits lifted and a smile on my face. Thank you.
  • Christmas
    Christmas Member Posts: 100
    #13
    survivor32t said:

    Thank you so much for responding with your story. It honestly gives me hope. I am starting to see some improvements. Not like I want them to be but at least it is something. Sometimes I do feel like I am getting depressed but my family , they are here and are a great support group and lift me back up. I am starting to eat very little. I am like a child having to learn how to eat all over again. Yes my ears are the same way. The said they may want to put tubes in but I would rather have the hearing aids. I have been poked on enough. So we will see how that goes. I am glad you are doing so much better. My job before I got sick , I was on my feet and very extremely active all the time. I was a Houseperson at a local hotel and was busy all the time. It is hard for me right now because I want to return to work so much. I really miss it. I hear people gripe and complain sometimes about having to work. I would much rather work than go through all this. Anyway I am rambling. You have given me inspiration and hope and it is greatly appreciated. Thank you and I will keep my spirits lifted and a smile on my face. Thank you.

    I am a nasopharyngeal cancer survivor. Yes, you will be able to eat again. Almost like a baby, start with soft bland foods. Keep trying different foods. Jello, juices, soft cooked vegetables, cooked cereals with extra liquids. I still like gravy with everything because it helps to get the food down. Be patient, but keep introducing new foods. Your ability to eat and your taste buds will improve.

    You sound like a strong person. Don't let this illness get you. I will never be the same, but I am thankful that I am a survivor and I can still enjoy my life. I wish you the best.

    As for the mucous -- my doctors have me irrigate my nose with water two to three times a day. Seems to help me quite a bit. Get a syringe, fill with water, and squirt up your nose. I'm not sure if you're ready for this treatment, but you should check with your doctor.

    Sounds like you've gotten through the worst part. Things can only get better from here on.
  • survivor32t
    survivor32t Member Posts: 14
    #14
    Christmas said:

    I am a nasopharyngeal cancer survivor. Yes, you will be able to eat again. Almost like a baby, start with soft bland foods. Keep trying different foods. Jello, juices, soft cooked vegetables, cooked cereals with extra liquids. I still like gravy with everything because it helps to get the food down. Be patient, but keep introducing new foods. Your ability to eat and your taste buds will improve.

    You sound like a strong person. Don't let this illness get you. I will never be the same, but I am thankful that I am a survivor and I can still enjoy my life. I wish you the best.

    As for the mucous -- my doctors have me irrigate my nose with water two to three times a day. Seems to help me quite a bit. Get a syringe, fill with water, and squirt up your nose. I'm not sure if you're ready for this treatment, but you should check with your doctor.

    Sounds like you've gotten through the worst part. Things can only get better from here on.

    Thank you and yes things can only get better. I am trying to be strong but sometimes it is just hard. Good days and bad days. I try to make more good then bad though. I had 2 biopsys done on my nose and I can not flush it with water yet. My doctor said I am still healing somewhat. I tried some watered down grits yesterday and it was so good. I am like a child learning how to eat all over again. I will never be the same and as well I am very thankful to be here. It gives you an entire new outlook about life. And material things just do not seem to matter. I live in the mountains of North Carolina and sometimes to see the beautiful scenery just makes my day. I look at everything so differently now. I am closer to my family then I ever have been. Anyway I am rambling on. Thank you for the encouragment and support. Take care.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #15
    survivor32t said:

    Thank you and yes things can only get better. I am trying to be strong but sometimes it is just hard. Good days and bad days. I try to make more good then bad though. I had 2 biopsys done on my nose and I can not flush it with water yet. My doctor said I am still healing somewhat. I tried some watered down grits yesterday and it was so good. I am like a child learning how to eat all over again. I will never be the same and as well I am very thankful to be here. It gives you an entire new outlook about life. And material things just do not seem to matter. I live in the mountains of North Carolina and sometimes to see the beautiful scenery just makes my day. I look at everything so differently now. I am closer to my family then I ever have been. Anyway I am rambling on. Thank you for the encouragment and support. Take care.

    Way to go, re the grits! It is one small step, but a step forward, nonetheless. You are on your way!

    Re the new outlook, I think that is true for all of us. But, unique for people like you and me who have this eating problem, perhaps, is the additional understanding that comes regarding food. I never knew that food played such an important role in the social fabric of our lives, nor did I realize how many commercials on the TV were about food :)!

    You are moving forward, you are, it seems, stopping to smell the roses, and you are eating grits. You are on your way, and answering your original question yourself with a resounding YESSS!!!
  • survivor32t
    survivor32t Member Posts: 14
    #16
    soccerfreaks said:

    Way to go, re the grits! It is one small step, but a step forward, nonetheless. You are on your way!

    Re the new outlook, I think that is true for all of us. But, unique for people like you and me who have this eating problem, perhaps, is the additional understanding that comes regarding food. I never knew that food played such an important role in the social fabric of our lives, nor did I realize how many commercials on the TV were about food :)!

    You are moving forward, you are, it seems, stopping to smell the roses, and you are eating grits. You are on your way, and answering your original question yourself with a resounding YESSS!!!

    Lol..yes...I have been starting to try new things. A few mashed potatos,some soup that contains rice,,,yum...I still crave the good hard to chew stuff though. And I watch the food network all the time. Thank you for the encouragment. We non-eaters have to stick together. Someone did reccommend a cook book that is called the I Can't Chew Cookbook. It is recipes for soft foods. I have not got one yet but I am debating on it. I looked at it online and it seems to have some good recipes. So are you still not able to eat right now??? I know this sounds funny ...and it is along way down the road...but I am craving a taco. I do not know why (probably all those Taco Bell commercial)lol..anyway thank you and you are in my prayers as well. I will never take eating for granted again.
  • survivor32t
    survivor32t Member Posts: 14
    #17
    soccerfreaks said:

    Way to go, re the grits! It is one small step, but a step forward, nonetheless. You are on your way!

    Re the new outlook, I think that is true for all of us. But, unique for people like you and me who have this eating problem, perhaps, is the additional understanding that comes regarding food. I never knew that food played such an important role in the social fabric of our lives, nor did I realize how many commercials on the TV were about food :)!

    You are moving forward, you are, it seems, stopping to smell the roses, and you are eating grits. You are on your way, and answering your original question yourself with a resounding YESSS!!!

    Oh yeah..check out my blog I have been working on.
    360.yahoo.com/survivor32t
  • survivor32t
    survivor32t Member Posts: 14
    #18
    survivor32t said:

    Oh yeah..check out my blog I have been working on.
    360.yahoo.com/survivor32t

    I have not been on here much but I have been posting to my blog..if anyone would like to read it go to 360.yahoo.com/survivor32t . I go next month for my PET Scan and then I will know more. I am just worried. Of course I guess once you have cancer the worry does not go away.Happy Holidays all.
  • Beejoo3
    Beejoo3 Member Posts: 6
    #19
    survivor32t said:

    I have not been on here much but I have been posting to my blog..if anyone would like to read it go to 360.yahoo.com/survivor32t . I go next month for my PET Scan and then I will know more. I am just worried. Of course I guess once you have cancer the worry does not go away.Happy Holidays all.

    I am one year out of treatment & have had 2 esophageal dilitations - the last in Aug. as I could not get anything down at all. I still have a feeding tube but am working on eating more so I can have it removed. Mucus was a Huge problem in the beginning but it just an occasional thing now. Food does not taste "right" to me so it is hard to eat, I have No appetite & no desire to do so. Good luck to survivor32t with your PET scan. I just had one & all is fine - so I am Thankful for that! I am hoping your ears & your sickness has cleared up -side effects seem to be different for everyone.
    Support from those who have "been there" is so great - these boards are wonderful!
  • survivor32t
    survivor32t Member Posts: 14
    #20
    Beejoo3 said:

    I am one year out of treatment & have had 2 esophageal dilitations - the last in Aug. as I could not get anything down at all. I still have a feeding tube but am working on eating more so I can have it removed. Mucus was a Huge problem in the beginning but it just an occasional thing now. Food does not taste "right" to me so it is hard to eat, I have No appetite & no desire to do so. Good luck to survivor32t with your PET scan. I just had one & all is fine - so I am Thankful for that! I am hoping your ears & your sickness has cleared up -side effects seem to be different for everyone.
    Support from those who have "been there" is so great - these boards are wonderful!

    Thank you so much for replying and I am glad your Pet scan was good. I am slowly getting better and it just takes patience. Even though some days I do not have them. As far as the eating and the appetite I know how you feel. My doctors told me that was what I needed to work on the most. But when nothing has a taste it is kind of dissappointing. Thank you and I pray you continue to get better at everything.
  • tobagogirl
    tobagogirl Member Posts: 11
    #21
    survivor32t said:

    Thank you so much for replying and I am glad your Pet scan was good. I am slowly getting better and it just takes patience. Even though some days I do not have them. As far as the eating and the appetite I know how you feel. My doctors told me that was what I needed to work on the most. But when nothing has a taste it is kind of dissappointing. Thank you and I pray you continue to get better at everything.

    You have an excellent chance of eating again. I haven't eaten in 4 years, resulting from extensive radiation to head and neck after sinus and submandibullar tumors were removed. No chemo and thankfully my feeding tube and I have bonded. I am also fortunate that I have retained my taste buds, even though nothing can get past the top of my throat, not even my own saliva. I cook all my meals as I would normally, put them through the blender and supplement with Ensure or Boost.
    The mucus is a real challenge, but less so than in the beginning. Keep the faith and laugh as often as you can at yourself and your circumstances. The levity helps bring a different perspective.
    I wish you well and will pray that you triumph.

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