Just Starting the Journey

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Pino Tea
Pino Tea Member Posts: 6
edited March 2014 in Head and Neck Cancer #1
I am 55 years old and live in the UK. I was diagnosed with tonsil cancer after having my left tonsil removed in December. My treatment plan is 30 sessions of radiotherapy to left side of my neck and throat area. I have now had 8 treatments and already I am finding difficulty eating because of the taste. I know this is normal and I know its going to get a lot worse. In these early stages are there any suggestions on how to learn to live with this as I am really struggling to find things to eat, or do you just become accustomed to this. Just like to say also how helpful this site has been to me in understanding the side effects of the treatment.
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Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
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    Hi Pino Tea
    I would like to welcome you here to CSN. You are correct as the treatment continue the taste of food will get worse and will get to the point where you will not want to eat at all. Did you get a PEG tube if so this should help keep you from loosing too much weight, if not you will have to do it the hard way. My wife kept me alive on watered down grits and cream of wheat, now and then I would eat a soft cooked egg, nothing had any taste.

    But the good news is that when the treatment is finish it all came back about 85%, so remember there is life after cancer. The road you are on will be difficult at times but if you read these post here you will find a lot of friendly people willing to help you on your journey.


    Take care and God be with you my friend
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Getting Enough Calories
    Welcome...

    Like HONDO said, it'll get worse, and your throat will be pretty torn up inside especially the last few weeks of radiation and the few weeks following. Just so you know if you haven't heard already. You'll still be "cooking" for lack of better words for a few weeks after radiation. Some people tend to get depressed that they don't start feeling relief as soon as radiation is over, it doesn't work that way.

    That being said, I didn't have a PEG either. A lot on these forums highly endorse them. I can only say from my experience (nine weeks of chemo followed with seven weeks of chemo and 35 radiation exposures) that it wasn't that bad for me. Yes, I lost about 45# which I had the extra to lose, so that wasn't a health factor. Other than you are not losing via exercise or diet, it's strictly a result of the chemo, radiation and not taking in enough calories.

    During the six weeks or so at the end which I spoke of, I mainly survived on water and Ensure Plus. I needed a liquid pain solution or would dissolve a Percocet in a little water to just get enough relief to drink water and the Ensure.

    My logic being that it was really hard and painful to eat much of anything solid. The Ensure Plus gives you about 350 calories per can, so 3 - 4 of those a day did give me a lot more calories, minerals and vitamins that I could have ever gained from the small amount of food I could take in. I did occasionally eat jarred DelMonte Peaches, canned or fresh cooked spinach, cream of wheat and things like that mainly to keep the muscles and throat swallowing mechanisms in good working order and exercised.

    You'll soon hear or figure out that everyone is different and responds differently. Find what works for you and know that at the end of each day, you're another day closer to beating the cancer.

    Attitude, faith, family and friends play a huge part in your success and general well being. Having this web site and others similar can be a huge benefit. There are so many here that have gone through the journey you are just in the early stages of. Draw from that knowledge and experience and it'll take you far.

    Good Luck and God Bless,
    John
  • Pino Tea
    Pino Tea Member Posts: 6
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    Skiffin16 said:

    Getting Enough Calories
    Welcome...

    Like HONDO said, it'll get worse, and your throat will be pretty torn up inside especially the last few weeks of radiation and the few weeks following. Just so you know if you haven't heard already. You'll still be "cooking" for lack of better words for a few weeks after radiation. Some people tend to get depressed that they don't start feeling relief as soon as radiation is over, it doesn't work that way.

    That being said, I didn't have a PEG either. A lot on these forums highly endorse them. I can only say from my experience (nine weeks of chemo followed with seven weeks of chemo and 35 radiation exposures) that it wasn't that bad for me. Yes, I lost about 45# which I had the extra to lose, so that wasn't a health factor. Other than you are not losing via exercise or diet, it's strictly a result of the chemo, radiation and not taking in enough calories.

    During the six weeks or so at the end which I spoke of, I mainly survived on water and Ensure Plus. I needed a liquid pain solution or would dissolve a Percocet in a little water to just get enough relief to drink water and the Ensure.

    My logic being that it was really hard and painful to eat much of anything solid. The Ensure Plus gives you about 350 calories per can, so 3 - 4 of those a day did give me a lot more calories, minerals and vitamins that I could have ever gained from the small amount of food I could take in. I did occasionally eat jarred DelMonte Peaches, canned or fresh cooked spinach, cream of wheat and things like that mainly to keep the muscles and throat swallowing mechanisms in good working order and exercised.

    You'll soon hear or figure out that everyone is different and responds differently. Find what works for you and know that at the end of each day, you're another day closer to beating the cancer.

    Attitude, faith, family and friends play a huge part in your success and general well being. Having this web site and others similar can be a huge benefit. There are so many here that have gone through the journey you are just in the early stages of. Draw from that knowledge and experience and it'll take you far.

    Good Luck and God Bless,
    John

    Getting enough calories
    Thankyou for your advice. My aim is to keep drinking and swallowing as much as possible. I suppose its all trial and error to find which foods are 'palatable'. I did ask the Onco about the PEG after reading about it on this forum but he said it is not something he would recommend as this can result in other problems. Maybe I am one of the 'lucky ones' only needing Radiotherapy that he thinks the PEG isn't necessary. When the time comes that I can't eat anything due to the pain then I will ask for the ensure. Its really good to have this knowledge in preparation for whats to come. Thankyou
  • MarineE5
    MarineE5 Member Posts: 1,031 Member
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    Pino Tea said:

    Getting enough calories
    Thankyou for your advice. My aim is to keep drinking and swallowing as much as possible. I suppose its all trial and error to find which foods are 'palatable'. I did ask the Onco about the PEG after reading about it on this forum but he said it is not something he would recommend as this can result in other problems. Maybe I am one of the 'lucky ones' only needing Radiotherapy that he thinks the PEG isn't necessary. When the time comes that I can't eat anything due to the pain then I will ask for the ensure. Its really good to have this knowledge in preparation for whats to come. Thankyou

    Pino Tea,

    Sorry to hear that you have to walk this path, but you have found a good source for information here.

    As Hondo and John mentioned, things will get worse for the next several weeks. Food will taste like cardboard and fliuds will taste like aluminum. One thing that I used to sooth my mouth and throat was a Baking Soda and Salt solution in water.

    It was recommended to me by the Nurses at the hospital. 1 teaspoon of Baking Soda and 1 teaspoon of Salt in 1 quart of room temperature water mixted up and rinse/ gargle as often as you feel you need to do to take the edge off the discomfort in your mouth and throat. As time went on, I increased the amounts to 1 tablespoon of each in the quart of water. It worked well for me.

    Other people here used a solution known as " Magic Mouthwash " I didn't know about this when I went thru treatments 5 years ago. You may want to ask your Doctor about pain meds down the road.

    Calories- what ever your weight is currently, multiply that by 12 and that is the amount of calories you need to take in daily to maintain your current weight, example 200lbs X 12 = 2400 calories daily. Adjust plus or minus to keep that weight.

    My Best to You and Everyone Here
  • Dazey
    Dazey Member Posts: 91
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    Pino Tea said:

    Getting enough calories
    Thankyou for your advice. My aim is to keep drinking and swallowing as much as possible. I suppose its all trial and error to find which foods are 'palatable'. I did ask the Onco about the PEG after reading about it on this forum but he said it is not something he would recommend as this can result in other problems. Maybe I am one of the 'lucky ones' only needing Radiotherapy that he thinks the PEG isn't necessary. When the time comes that I can't eat anything due to the pain then I will ask for the ensure. Its really good to have this knowledge in preparation for whats to come. Thankyou

    good reply by John
    John's reply was right on target. There is not only a light at the end of the tunnel, but the tunnel does end. (As I write this, I am eating a turkey and cheese sandwich on an "everything" rye bread with wasabi mustard)
    I had only IMRT 30 tx (no chemo) and no PEG and finished treatment 10/26/09. My Radiation doctor said that he usually does not recommend a PEG for rads only. I did lose weight(extra pounds that were definitely not needed). It is do-able as John said. You do "cook" for quite some time and eating becomes a conscious, focused, time-consuming effort. You will refine the way you chew; you will relive your toddler years (eating and sleeping - hey, you may even go through the terrible two's crankiness!)Take advantage of any pain meds offered if you need them.
    It is important to understand that finishing treatment does not mean "all better" immediately. It is not like any other medical experience. Each week post treatment you may be able to see some improvement. I can honestly say that at post treatment week 14, I realized I felt great. There are still times my throat is terrible; I struggle with certain pills (need to crush); sometimes food gets "caught"; but overall, I feel great - no need for heavy duty pain meds. I had one prescription filled for liquid oxycod with a dosage of .5 ml every 3/4 hours as needed. It lasted me four months - I took a smaller dosage, .25 ml most of the time and usually only 2 doses/day. I did what I felt was right for me.

    I used Boost Plus (360 calories and 14 g protein) as my nutritional base - added protein powder n(110 calories, 20 g protein), yogurt (110 calories, 5 g protein), crushed vitamins, glutamine and distilled aloe water to make a shake -

    I still start each day with that shake and carry a "Boost" with me for just in case.
    As John said, each person is different and you will need to make the best decision for yourself. These were my experiences - best wishes on this journey from another traveler. Dazey
  • MaryRC
    MaryRC Member Posts: 114
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    I am new here and havent had
    I am new here and havent had anything done yet, have cancer lump on the back of my neck. PET test tomororow. I am reading all these post to learn all I can. I hope you are able to eat and to get your strength! I cant offer any advice though, just that I am thinking of you .
    Mary
  • HAWVET
    HAWVET Member Posts: 318
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    MaryRC said:

    I am new here and havent had
    I am new here and havent had anything done yet, have cancer lump on the back of my neck. PET test tomororow. I am reading all these post to learn all I can. I hope you are able to eat and to get your strength! I cant offer any advice though, just that I am thinking of you .
    Mary

    Just a couple things to add
    I noticed one of the posters indicated that she drank boost. During this loss of taste period, I did not like the taste of Ensure so I swapped to Boost. They are about the same price. It comes in vanilla and chocolate flavor. I think they also have strawberry.

    You are probably entering the worse part of the treatment phase, but the hope lies in the tales of all these survivors. Soon, you will be gliding back down to life close to normal. My recommendation is to remain positive, that you will survive this ordeal and that you too will be giving advice in a few months.
  • Pino Tea
    Pino Tea Member Posts: 6
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    HAWVET said:

    Just a couple things to add
    I noticed one of the posters indicated that she drank boost. During this loss of taste period, I did not like the taste of Ensure so I swapped to Boost. They are about the same price. It comes in vanilla and chocolate flavor. I think they also have strawberry.

    You are probably entering the worse part of the treatment phase, but the hope lies in the tales of all these survivors. Soon, you will be gliding back down to life close to normal. My recommendation is to remain positive, that you will survive this ordeal and that you too will be giving advice in a few months.

    Getting enough calories
    Do you know if Boost is available in the UK and if so do you buy it from the Pharmacy? Since April last year, Cancer patients in the UK get free prescriptions and Ensure is available on prescription from my Onco, but if Boost is also available this sounds like the better option. Does everyone eventually need to take food supplements or do some patients manage to survive on liquidized foods.
  • Dazey
    Dazey Member Posts: 91
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    Pino Tea said:

    Getting enough calories
    Do you know if Boost is available in the UK and if so do you buy it from the Pharmacy? Since April last year, Cancer patients in the UK get free prescriptions and Ensure is available on prescription from my Onco, but if Boost is also available this sounds like the better option. Does everyone eventually need to take food supplements or do some patients manage to survive on liquidized foods.

    Boost
    Here in US, I get Boost at both food supermarkets and drug stores. Cost in dollars is about $8-$9 for 6 serving size bottles - it comes in regular, high protein and "plus". The plus has more calories and vitamins. Taste is fine; even during treatment. I did use a straw during treatment - it was easier to sip it. Hope this helps. Dazey
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Pino Tea said:

    Getting enough calories
    Do you know if Boost is available in the UK and if so do you buy it from the Pharmacy? Since April last year, Cancer patients in the UK get free prescriptions and Ensure is available on prescription from my Onco, but if Boost is also available this sounds like the better option. Does everyone eventually need to take food supplements or do some patients manage to survive on liquidized foods.

    Ensure Plus
    Pino Tea, like said here in the US you can purchase either (Booost or Ensure) in regular grocery stores. The Ensure does also come in Ensure and Ensure Plus, the Plus offering more calories, vitamins and minerals. It also comes in several flavors, Vanilla, Strawberry, Chocolate, and I think Butter Scotch. I liked the Strawberry myself....

    As for supplements, I'm sure you and your doctors can work something out that works for you. The main thing is for you to keep as many calories in you to maintain your strength and weight. Also another very important thing is to stay hydrated, drinking as much water as that takes (a lot)... I became very sick during my second round of chemo and it was all primarily due to not taking in enough fluids....water tasted like sweat which was nasty, but you gotta do what you gotta do....it won't last forever, and you'll only make that mistake once.

    John
  • MarineE5
    MarineE5 Member Posts: 1,031 Member
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    Skiffin16 said:

    Ensure Plus
    Pino Tea, like said here in the US you can purchase either (Booost or Ensure) in regular grocery stores. The Ensure does also come in Ensure and Ensure Plus, the Plus offering more calories, vitamins and minerals. It also comes in several flavors, Vanilla, Strawberry, Chocolate, and I think Butter Scotch. I liked the Strawberry myself....

    As for supplements, I'm sure you and your doctors can work something out that works for you. The main thing is for you to keep as many calories in you to maintain your strength and weight. Also another very important thing is to stay hydrated, drinking as much water as that takes (a lot)... I became very sick during my second round of chemo and it was all primarily due to not taking in enough fluids....water tasted like sweat which was nasty, but you gotta do what you gotta do....it won't last forever, and you'll only make that mistake once.

    John

    Hydration
    Pino Tea,

    Just to add one little peice of information that John brought up. When I was going thru radiation, the Nurses told me that I needed to take in 64 ozs of water per day to stay hydrated. If you don't several things can happen. One is constipation, so I also took a stool softener called Colace, once a day because I was on some pain med's at about week 5 of the radiation. Pain med's can cause constipation also if you are not hydrated.

    So as John mentioned, make sure you get plenty of fluids in yourself.

    Mu Best to You and Everyone Here
  • marthakmason
    marthakmason Member Posts: 7
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    high calories
    My husband was losing too much weight using Ensure Plus so now he is "eating" Carnation VHC (Very High Calorie) which has 560 per can. He has a PEG tube, so of course he can't taste it, so I can't comment on the taste. I pick it up from our Home Health Care office - it's not in drug stores here. One concern: constipation is a problem, so ask your doc about how to deal with that.

    I just joined this site and it has already been very helpful. It's so good to know you aren't alone in this!

    Martha
  • delnative
    delnative Member Posts: 450
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    high calories
    My husband was losing too much weight using Ensure Plus so now he is "eating" Carnation VHC (Very High Calorie) which has 560 per can. He has a PEG tube, so of course he can't taste it, so I can't comment on the taste. I pick it up from our Home Health Care office - it's not in drug stores here. One concern: constipation is a problem, so ask your doc about how to deal with that.

    I just joined this site and it has already been very helpful. It's so good to know you aren't alone in this!

    Martha

    Hey, Pino Tea
    I suspect that in looking through this thread you're probably saying, "My God, what have I gotten myself into?"
    I know that all of this can amount to information overload, and granted, there's a lot to learn. But take it one step at a time, and as you walk this path there will be plenty of people here to help you along the way.
    Good luck and God bless.

    --Jim, buried in snow in slower lower Delaware
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
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    delnative said:

    Hey, Pino Tea
    I suspect that in looking through this thread you're probably saying, "My God, what have I gotten myself into?"
    I know that all of this can amount to information overload, and granted, there's a lot to learn. But take it one step at a time, and as you walk this path there will be plenty of people here to help you along the way.
    Good luck and God bless.

    --Jim, buried in snow in slower lower Delaware

    Nutrition
    Trial and error- get whatever nutrition you can, as such is essential in helping your body cope with all it has to deal with. I, and many others, had (and still have) PEG tubes to have a direct access to the stomach which bypasses the mouth and throat, and it does make the getting of nutrition easier. As is, for you, I would encourage you to press your Drs. about what advice and help they can give you with this issue.

    The going does get tough, Pino Tea. I'm 15-month, and that is nothing compared to the real vets. As I, and they, have survived- SO WILL YOU.

    Believe.

    kass
  • fsdman
    fsdman Member Posts: 51
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    Kent Cass said:

    Nutrition
    Trial and error- get whatever nutrition you can, as such is essential in helping your body cope with all it has to deal with. I, and many others, had (and still have) PEG tubes to have a direct access to the stomach which bypasses the mouth and throat, and it does make the getting of nutrition easier. As is, for you, I would encourage you to press your Drs. about what advice and help they can give you with this issue.

    The going does get tough, Pino Tea. I'm 15-month, and that is nothing compared to the real vets. As I, and they, have survived- SO WILL YOU.

    Believe.

    kass

    I think Kent is right in the
    I think Kent is right in the trial and error position. I cant tell how many different things I tried as treatment and damage progressed. My biggest issue became dehydration because I couldnt hold down even water. After3-4days I was in trouble and had to be hydrated for acouple of days .Then I got my PEG and usedJevity. You must continue toalso try to eat so you dont forget how to swallow.I got rid of the tube shortly after treatment.I am doing great now .It was just bump in the road.
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
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    delnative said:

    Hey, Pino Tea
    I suspect that in looking through this thread you're probably saying, "My God, what have I gotten myself into?"
    I know that all of this can amount to information overload, and granted, there's a lot to learn. But take it one step at a time, and as you walk this path there will be plenty of people here to help you along the way.
    Good luck and God bless.

    --Jim, buried in snow in slower lower Delaware

    your closing
    Jim, I realy liked your closing, it made me laugh outloud. We have about 10 inches in Cincinnati.
    God Bless,
    Debbie
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
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    PEG Tube
    Hi Pino Tea. I also had/have a feeding tube. I am 15 weeks outs from my 35 radiation treatments and I still have trouble swallowing. I do try different foods but most don't taste right and for those that do, they sometimes get stuck in my throat and I have to cough or put a toothbrush in my mouth to get them unlodged. I could not imagine being without the tube right now as I do a lot of feedings thru it. I just saw my ENT Tuesday and he said my throat is still really swollen. As everyone has said, needs are by a person to person basis and you may not need a tube but if you feel you do (down the treatment) road, be sure to discuss that with your doctor.
    I had another biopsy today and I can't explain this but it gave me back my voice. Before today my voice was almost like a whipser but when I woke up from the surgery today, my voice was back. Well, acutally I can explain it, it was a BLESSING FROM GOD! I am also positive that the biopsy will come back as cancer FREE!!
    I wish you the very best with your journey. I strongly recommend that you visit CSN often. This is where I found ALL my informtion. I pray that God will bless you with the strength you will need for this jounery. Stay positive and NEVER lose hope!!
    God Bless,
    Debbie
  • Scambuster
    Scambuster Member Posts: 973
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    Treatment done in Hong Kong
    Hi Pino,

    I finished Treatment Oct 10 2009 after surgery for Cancer in the Left Tonsil Stage 1. I had this followed with Erbitux 1x a week and IMRT twice a day for 7 weeks. The going got rough in about week 3 and I had to get a PEG. I lost 20kg total (94 to 74)

    I was intolerant to the Hospital supplied Nestle Products (Ensure ?? ) and found via a Websearch the Sunrider product called VitaShake. I mixed mine with 220 ml of Rice Milk (Readily Available) for each feed and that kept me alive till several weeks after i completed treatment. (You can google Sunrider and find where to get it. Unfortunately its MLM but you can join and get all gear at 20% off.) I still take one Vitashake a day with my cereal as it provides a good part of your essential nutrition. I also take a sachet of their Acidopholus product called Vitadopholis.

    I consulted with Naturopaths as well and found the advice and supplement given of great value. You may not be able to benefit much while you are now in treatment but certainly worth some consideration once you're through. I take a range of supplements now and watch diet carefully.

    The rotten side effect of destroyed salivary glands and some taste loss is the major legacy I have and I can live with that (the new normal) but I intend to try and improve that as I learn more.

    Keep tabs on your condition regarding your Mental state as depression crept in for me once I finished treatment. I was finally diagnosed and treated fortunately. Just remember your post treatment recovery may be slower than you want or expect. Your eating will recommence but you will have remain patient and let your body heal and slowly work up from soups to rice and soup and then soft veges (and soup) and you may need to continue with fluids while you eat depending on where you are zapped.

    I also recommend you search back on these pages fro info about Glutamine Powder for when your mouth starts to really hurt during and after treatment.

    There is a lot of advice on this thread and I hope the above can assist in some way. you will look back someday not so far away with relief but there are still some hard yards ahead of you.

    Hang in there and let the Doctors and Nurses know what you feel and need.

    Cheers
    Scambuster
  • CellWall
    CellWall Member Posts: 3
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    Taste
    Hello Pino Tea,
    I have to echo what most of the others have already mentioned here. After your treatments come to an end things will begin to return to normal but probably not completely. This is simply something we patients have to deal with since radio and chemo therapies are extremely toxic and not just to the tumor. I was treated for a T4 neck mass in 2003 with six weeks of chemo and twice daily radiotherapy; a rather aggressive treatment plan but since the tumor was so large surgery was out of the question. The unending mouth infections and damaged throat tissues made solid food impossible so I lived on Ensure and Boost-the generic brands at most drug stores are the same and much less expensive-and at the completion of this all I was down to 117# from 155#. My doctors insisted on a G-Tube but I refused finding the idea revolting; so I guess I did it the hard way. My taste vanished after about two weeks and it was a huge shock having one of my five senses stripped from me. I cried for quite a while, but after about six months I got most of it back.
    At the time I was beside myself with fear and exhaustion and pain. Looking back I do not know how I did it but I did and so will you. What helped keep me going was counting off the days on a calendar until it was all over and keeping a daily journal of all that I was experiencing as it served to transfer my fear and frustration from mind to page and leave it all there for a while. I only wish that I had been more forceful pressuring my doctors into telling me of all the possible side effects because I would not have felt so surprised and afraid each time a new one cropped up. And they did. Good luck to you.
  • rmkbrad
    rmkbrad Member Posts: 176
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    Just starting also.
    I am 44 years old and I was initially diagnosed with esophagus cancer just before Christmas, andiocarcinoma. I went down to the VA hospital in San Francisco to have a pet scan done and they found a tumor in my left tonsil and a small pin head size in one of my lungs. Anyway I had my tonsils out for biopsy last week. What a miserable thing, now in few weeks I am going to start chemo and radiation, they are sending me to University of California San Francisco to do the radiation, they have the new Proton therapy radiation there so I am guessing they might use that, since they said they are going to treat all three places at once. I am a kidney transplant recipient, so the conclusion since I don't smoke or drink is the immune suppressants allowed the cancer to grow and spread. Anyway I am scarred and the tonsillectomy is miserable, how does it compare with the chemo and radiation.

    Brad