The radiation journey

2

Comments

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #22
    Tim6003 said:

    Phrannie ....MrsSarge ...
    No worries y'all ...you are just where you should be ...behind some, in front of others (what I mean by that is as I follow your posts I see me in much of what you wrote ..but sometimes a week or so ahead, and sometimes a week or so behind) ....

    My wife and I are keeping you all in our thoughts and prayers ....just so you know....and we are ready for you to come out the other side with the all clear....

    It will continue to get worse before it gets better (most times, but everybody is different) .....but you gotta love your attitudes and your spunk....you will be fine!

    Tim

    NOTE: I've not seen a post from Layalyn lately ....unless I missed it ....she doing okay??

    Phrannie
    If the vomits are a knocking at the door, so to speak...Of that which others have spoken of in regards to not having a PEG, is that it wouldn't have mattered, because everything they ate gave them the vomits. Perhaps the Jevity is just plain different! I, again, was exclusive w/Jevity and the PEG from the end of week #1-#8, and beyond; and my experience w/vomits was limited to when I first awoke in the AM on my regular bed, and I attributed it to the toxic mucous buildup over the 4-hours of sleep. And, it got so I would set my alarm for 3 1/2-hours to avoid this, though that alarm never did wake me. And, yes, goodbye vomits! What I'm saying is- possibly a Jevity and water diet is designed to be tx-friendly to avoid the vomits? Did work for me. Perhaps it's just as simple as the Jevity being so much easier for the stomach to digest?

    So, Phrannie, you might wanna experiment with the PEG and see if it works for you. Must keep the swallow function going with water, though.

    kcass
  • Sam999
    Sam999 Member Posts: 319 Member
    #23
    Kent Cass said:

    Phrannie
    If the vomits are a knocking at the door, so to speak...Of that which others have spoken of in regards to not having a PEG, is that it wouldn't have mattered, because everything they ate gave them the vomits. Perhaps the Jevity is just plain different! I, again, was exclusive w/Jevity and the PEG from the end of week #1-#8, and beyond; and my experience w/vomits was limited to when I first awoke in the AM on my regular bed, and I attributed it to the toxic mucous buildup over the 4-hours of sleep. And, it got so I would set my alarm for 3 1/2-hours to avoid this, though that alarm never did wake me. And, yes, goodbye vomits! What I'm saying is- possibly a Jevity and water diet is designed to be tx-friendly to avoid the vomits? Did work for me. Perhaps it's just as simple as the Jevity being so much easier for the stomach to digest?

    So, Phrannie, you might wanna experiment with the PEG and see if it works for you. Must keep the swallow function going with water, though.

    kcass

    Phrannie,
    Hope things get
    Phrannie,

    Hope things get better for you soon. From what other psoters have told us, last 2 weeks are definately the hardest, you arre starting the hardest part of the journey now. Overall you did much better than most do last couple of weeks.

    Is mugard still helping? Do you have any mouth sores? What are you taking for mucos?

    I have finished 6 radiations and no mouth sorres yet. I do see some starting but than they disappear like you said. My doctor does not believe in mugard at all and that is making me a bit uncomfortable.

    Sam
  • phrannie51
    phrannie51 Member Posts: 4,716
    #24
    Kent Cass said:

    Phrannie
    If the vomits are a knocking at the door, so to speak...Of that which others have spoken of in regards to not having a PEG, is that it wouldn't have mattered, because everything they ate gave them the vomits. Perhaps the Jevity is just plain different! I, again, was exclusive w/Jevity and the PEG from the end of week #1-#8, and beyond; and my experience w/vomits was limited to when I first awoke in the AM on my regular bed, and I attributed it to the toxic mucous buildup over the 4-hours of sleep. And, it got so I would set my alarm for 3 1/2-hours to avoid this, though that alarm never did wake me. And, yes, goodbye vomits! What I'm saying is- possibly a Jevity and water diet is designed to be tx-friendly to avoid the vomits? Did work for me. Perhaps it's just as simple as the Jevity being so much easier for the stomach to digest?

    So, Phrannie, you might wanna experiment with the PEG and see if it works for you. Must keep the swallow function going with water, though.

    kcass

    I haven't tried Jevity....
    I have on hand....Ensure Plus, Instant Breakfast VHC...and Complete (which is for tube only)...I can get Ensure down, the IB VHC is (in the last 2 days) pretty thick for getting down, but I've been chasing it with milk. Getting something stuck halfway down my throat will get me lurching for the bathroom...thing is, these changes came in two days...

    I think I was under the misconception that a massive sore throat would be the precipitator to using the tube, and that I don't have....I never thought about the fact that food simply won't go down my throat due to dryness, or to damage and swelling...that it would be the "slide factor".

    So much is uncharted territory by me, and I'm not a great innovator...I try what you guys tell me to try (yesterday, adding milk to the equation)...but I had to concentrate not to throw up.

    So now, I'll order some Jevity to have on hand for the tube (it is looming as my main source feeder, I can tell). I'm still swollowing water fine, and the milk....no more power shakes tho, WAY too thick....

    Sam, I use the MuGuard faithfully....because it works for me. I have NO mouth sores whatsoever...I have those dry "sandy" feeling spots on my gums and one on my cheek, and those are what turn into mouth sores (learned that from my bottom lip)...so the MuGuard is keeping those just where they are...painless sandy spots :).

    p
  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
    #25
    phrannie51 said:

    I haven't tried Jevity....
    I have on hand....Ensure Plus, Instant Breakfast VHC...and Complete (which is for tube only)...I can get Ensure down, the IB VHC is (in the last 2 days) pretty thick for getting down, but I've been chasing it with milk. Getting something stuck halfway down my throat will get me lurching for the bathroom...thing is, these changes came in two days...

    I think I was under the misconception that a massive sore throat would be the precipitator to using the tube, and that I don't have....I never thought about the fact that food simply won't go down my throat due to dryness, or to damage and swelling...that it would be the "slide factor".

    So much is uncharted territory by me, and I'm not a great innovator...I try what you guys tell me to try (yesterday, adding milk to the equation)...but I had to concentrate not to throw up.

    So now, I'll order some Jevity to have on hand for the tube (it is looming as my main source feeder, I can tell). I'm still swollowing water fine, and the milk....no more power shakes tho, WAY too thick....

    Sam, I use the MuGuard faithfully....because it works for me. I have NO mouth sores whatsoever...I have those dry "sandy" feeling spots on my gums and one on my cheek, and those are what turn into mouth sores (learned that from my bottom lip)...so the MuGuard is keeping those just where they are...painless sandy spots :).

    p

    phrannie, sorry
    you're having such a hard time, but the end is near!!! You're on the down side of this ride!!! My throat is about the same. I really thought I would feel worse by now (maybe it's coming!!!!) but don't feel terrible until I try to swallow, but I feel I have it easier than ya'll that are doing chemo also, and my rads aren't on my neck, other than just about a 2" sq. at my vocal cords, so the salivary glands aren't supposed to be affected and I don't think they are, but way back in my throat....well it feels like a whole "passle" of cotton balls are converging!!! Oh well, this too shall pass I'm told!:0
  • mls351w
    mls351w Member Posts: 90
    #26
    Mrs. Sarge said:

    phrannie, sorry
    you're having such a hard time, but the end is near!!! You're on the down side of this ride!!! My throat is about the same. I really thought I would feel worse by now (maybe it's coming!!!!) but don't feel terrible until I try to swallow, but I feel I have it easier than ya'll that are doing chemo also, and my rads aren't on my neck, other than just about a 2" sq. at my vocal cords, so the salivary glands aren't supposed to be affected and I don't think they are, but way back in my throat....well it feels like a whole "passle" of cotton balls are converging!!! Oh well, this too shall pass I'm told!:0

    answers to questions
    Sam999
    treated for SCC BOT, 2 weeks 24 hr chemo, 40 rads, surgery to remove 5 lymph nodes.

    Answers
    1. Never had a single mouth sore but had thrush twice.
    2. I had 2nd degree burns on both sides of my neck and needed morphine patches on burns.
    3. Never too fatigued.
    4. Lost taste early on, returned better than ever after treatment.
    5. Had dry mouth but never carried a water bottle around, too painful to swallow.
    5. Only had severe sore throat. Felt like I had all the major flues at the same time. Also had very bad heartburn, which I have never heard anyone else mention.
    6. Could not swallow after 4 weeks of rad. Used peg only.
    7. See #6.
    8. Lost about 10 lbs and rad onc threatened to put me on automatic feeder. Maintained weight so as not to have another thing attached to my body.
    9. My rad onc insisted on me having a peg before treatment started. Than God I obeyed her.
    10. I don't recall ever sleeping very much at all except on the drive home each day(50-65 miles). During chemo weeks I had a pump attached to me for 5 days, 24 hours a day, and I was always worried about accidently pulling it out of my port. I remember laying in bed in spare bedroom every night and staring at the window, waiting for the first signs of daylight. Thanking God for the passing of another day because I was one day closer to being finished with this ordeal.
    11. I had less problems than anyone else that I have read about on this sight.

    I want you to know that Nov. 29th will be 6 years since treatment. I have full taste, normal saliva, and NO issues what-so-ever. Have no feeling on right side of neck(surgery). Have a scar hidden in all the wrinkles on my neck. And under my chin I have turkey-looking skin hanging down. But who would complain about these things after going through treatment. I started treatment at age 53 and had my 59th birthday May 11th. If an old grouch like me can get through this anyone can.
    Hope this helps. My best wishes to you and yours!

    Mark S.
  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
    #27
    mls351w said:

    answers to questions
    Sam999
    treated for SCC BOT, 2 weeks 24 hr chemo, 40 rads, surgery to remove 5 lymph nodes.

    Answers
    1. Never had a single mouth sore but had thrush twice.
    2. I had 2nd degree burns on both sides of my neck and needed morphine patches on burns.
    3. Never too fatigued.
    4. Lost taste early on, returned better than ever after treatment.
    5. Had dry mouth but never carried a water bottle around, too painful to swallow.
    5. Only had severe sore throat. Felt like I had all the major flues at the same time. Also had very bad heartburn, which I have never heard anyone else mention.
    6. Could not swallow after 4 weeks of rad. Used peg only.
    7. See #6.
    8. Lost about 10 lbs and rad onc threatened to put me on automatic feeder. Maintained weight so as not to have another thing attached to my body.
    9. My rad onc insisted on me having a peg before treatment started. Than God I obeyed her.
    10. I don't recall ever sleeping very much at all except on the drive home each day(50-65 miles). During chemo weeks I had a pump attached to me for 5 days, 24 hours a day, and I was always worried about accidently pulling it out of my port. I remember laying in bed in spare bedroom every night and staring at the window, waiting for the first signs of daylight. Thanking God for the passing of another day because I was one day closer to being finished with this ordeal.
    11. I had less problems than anyone else that I have read about on this sight.

    I want you to know that Nov. 29th will be 6 years since treatment. I have full taste, normal saliva, and NO issues what-so-ever. Have no feeling on right side of neck(surgery). Have a scar hidden in all the wrinkles on my neck. And under my chin I have turkey-looking skin hanging down. But who would complain about these things after going through treatment. I started treatment at age 53 and had my 59th birthday May 11th. If an old grouch like me can get through this anyone can.
    Hope this helps. My best wishes to you and yours!

    Mark S.

    Mark
    What a wonderful, encouraging post for all of us currently in the "fight". The main objective of course is to live with as normal of life as possible. You have told us that we won't necessarily have horrible side-effects and regrets!!! Thanks for taking the time!
  • mls351w
    mls351w Member Posts: 90
    #28
    Mrs. Sarge said:

    Mark
    What a wonderful, encouraging post for all of us currently in the "fight". The main objective of course is to live with as normal of life as possible. You have told us that we won't necessarily have horrible side-effects and regrets!!! Thanks for taking the time!

    thank you
    Mrs. Sarge, I love you for your positive, caring attitude!
  • Sam999
    Sam999 Member Posts: 319 Member
    #29
    mls351w said:

    thank you
    Mrs. Sarge, I love you for your positive, caring attitude!

    8 rads done

    Thanks everyone for wonderful info, this thread will give a good idea on how things progresses for everyone. Please do keep updating as you progress in your treatment and see changes.

    I finished my 8th rad on friday and food was tasting good so i thought i will have a good tine at memorrial week end get togethters! Well it did not turn out to be that way, starting saturday taste started to go off a bit. It started with ice cream tasting less sweet on one side, i would say after that it progressed pretty fast and by this evening all the taste is gone!

    I have extreme dry mouth and see one sore coming up on one side of the tongue, i am hoping mugard makes it go away by tomorrow!

    I dont have any fatigue or any other pain. My skin is doing okay so far.

    Sam
  • phrannie51
    phrannie51 Member Posts: 4,716
    #30
    Sam999 said:

    8 rads done

    Thanks everyone for wonderful info, this thread will give a good idea on how things progresses for everyone. Please do keep updating as you progress in your treatment and see changes.

    I finished my 8th rad on friday and food was tasting good so i thought i will have a good tine at memorrial week end get togethters! Well it did not turn out to be that way, starting saturday taste started to go off a bit. It started with ice cream tasting less sweet on one side, i would say after that it progressed pretty fast and by this evening all the taste is gone!

    I have extreme dry mouth and see one sore coming up on one side of the tongue, i am hoping mugard makes it go away by tomorrow!

    I dont have any fatigue or any other pain. My skin is doing okay so far.

    Sam

    Sam, when I first got the MuGuard...
    I had a nasty sore just inside my bottom lip....I used a L-Glutamine swish along with the MuGuard. L-Glutamine will heal sores, the MuGuard protects you from getting them...use it faithfully 4 to 6 times a day (stings like son-of-a-gun, but then all pain disaptes)...MuGuard also gives me about 30 minutes reprieve from dry mouth.

    Icecream was a disappointment to me, also...tasted good for a week or so, but it lost all flavor....Milk still has flavor...go figure. I tried chocolate milk, but it too is bland, bland, bland.

    Here is a strange thing, tho. My sister made shrimp salad (the kind made with macaroni)...I taste it for the whole bowl, it doesn't sting...and it doesn't stick in my throat...gotta try anything and everything to find what you can taste, and what will work with dry mouth.

    p
  • meaganb
    meaganb Member Posts: 244 Member
    #31
    phrannie51 said:

    Sam, when I first got the MuGuard...
    I had a nasty sore just inside my bottom lip....I used a L-Glutamine swish along with the MuGuard. L-Glutamine will heal sores, the MuGuard protects you from getting them...use it faithfully 4 to 6 times a day (stings like son-of-a-gun, but then all pain disaptes)...MuGuard also gives me about 30 minutes reprieve from dry mouth.

    Icecream was a disappointment to me, also...tasted good for a week or so, but it lost all flavor....Milk still has flavor...go figure. I tried chocolate milk, but it too is bland, bland, bland.

    Here is a strange thing, tho. My sister made shrimp salad (the kind made with macaroni)...I taste it for the whole bowl, it doesn't sting...and it doesn't stick in my throat...gotta try anything and everything to find what you can taste, and what will work with dry mouth.

    p

    Phrannie!
    Thanks for mentioning the L-glutamine. I know it's in the super thread too. I swish with 10g 3 times a day and even if I start to feel an ulcer coming up I use that and it really does make them heal or at least ease the pain!
  • Sam999
    Sam999 Member Posts: 319 Member
    #32
    meaganb said:

    Phrannie!
    Thanks for mentioning the L-glutamine. I know it's in the super thread too. I swish with 10g 3 times a day and even if I start to feel an ulcer coming up I use that and it really does make them heal or at least ease the pain!

    12 rads done

    Have developed some mouth sores (one on the side of the tongue on surgery side) and one on the roof of the mouth. Not taking any pain medication. Have started a combination of mugard and capahasol. My doc does not allow l- glutamine as she does not know about this.

    My thoat is hurting also, warm magic mineral broth with some salt and butter is helping.

    Luckily no mucous yet.

    My neck where the disection was is feeling a bit tight, doing regular excercises. Hoping it does not get worse over next few weeks.

    My skin is still doing very well, no signs of burns.

    My appetite is good and have good energy. Lost 2 pounds which seems okay with such limited carb intake. I do have about 30 pounds i can lose:)

    I pretty much sleep thru night except waking up for cople of mins one time to use bathroom and also do one more round of mugard.

    It would be great if more people who are inradiatiion right now put their updates as well.

    Thanks,
    Sam


    Sam
  • meaganb
    meaganb Member Posts: 244 Member
    #33
    Sam999 said:

    12 rads done

    Have developed some mouth sores (one on the side of the tongue on surgery side) and one on the roof of the mouth. Not taking any pain medication. Have started a combination of mugard and capahasol. My doc does not allow l- glutamine as she does not know about this.

    My thoat is hurting also, warm magic mineral broth with some salt and butter is helping.

    Luckily no mucous yet.

    My neck where the disection was is feeling a bit tight, doing regular excercises. Hoping it does not get worse over next few weeks.

    My skin is still doing very well, no signs of burns.

    My appetite is good and have good energy. Lost 2 pounds which seems okay with such limited carb intake. I do have about 30 pounds i can lose:)

    I pretty much sleep thru night except waking up for cople of mins one time to use bathroom and also do one more round of mugard.

    It would be great if more people who are inradiatiion right now put their updates as well.

    Thanks,
    Sam


    Sam

    Too bad your Dr won't allow
    Too bad your Dr won't allow the L-glutamine. Maybe you could print articles from the super thread and show them to her. It's not really much different from Lyseine which most Dr will tell you to take to prevent mouth sores. The L- glutamne really does work well at healing mouth sores! I swish with it religiously 3X/day now. It's the only thing that doesn't sting when I have an open sore.
  • Ingrid K
    Ingrid K Member Posts: 813
    #34
    Sam999 said:

    12 rads done

    Have developed some mouth sores (one on the side of the tongue on surgery side) and one on the roof of the mouth. Not taking any pain medication. Have started a combination of mugard and capahasol. My doc does not allow l- glutamine as she does not know about this.

    My thoat is hurting also, warm magic mineral broth with some salt and butter is helping.

    Luckily no mucous yet.

    My neck where the disection was is feeling a bit tight, doing regular excercises. Hoping it does not get worse over next few weeks.

    My skin is still doing very well, no signs of burns.

    My appetite is good and have good energy. Lost 2 pounds which seems okay with such limited carb intake. I do have about 30 pounds i can lose:)

    I pretty much sleep thru night except waking up for cople of mins one time to use bathroom and also do one more round of mugard.

    It would be great if more people who are inradiatiion right now put their updates as well.

    Thanks,
    Sam


    Sam

    sam and phrannie
    you have both encouraged me to make a pot of Magic Broth....I never made it when I was going thru treatment a year ago, but you guys make it sound pretty good. I am only two months off of the feeding tube, so still trying to find different things to eat and trying to make sure I am getting all the right kinds of nutrients.

    I have a fellow survivor from the Oral Cancer Foundation coming to visit next weekend so it will be a good time to make the broth for both of us.
  • Sam999
    Sam999 Member Posts: 319 Member
    #35
    Ingrid K said:

    sam and phrannie
    you have both encouraged me to make a pot of Magic Broth....I never made it when I was going thru treatment a year ago, but you guys make it sound pretty good. I am only two months off of the feeding tube, so still trying to find different things to eat and trying to make sure I am getting all the right kinds of nutrients.

    I have a fellow survivor from the Oral Cancer Foundation coming to visit next weekend so it will be a good time to make the broth for both of us.

    Ingrid, this broth i think
    Ingrid, this broth i think might be good for when nothing tastes good, like we are right now...even the water does noy taste good. If you are post treatment and do have some taste buds, try other recipes by rebecca katz. I am ordering her book soon based on my exp with broth.

    Megan, yes i also wish my doc would allow it. I even thought about doing it without letting he know but than did not feel comfortable. Right now moth sores are in control so i am okay. If i get more and cannot control them, i will definately try l-glutamine.

    Sam
  • tuffenuff
    tuffenuff Member Posts: 277
    #36
    Tonsil Dad said:

    Vitamins
    A multi-vitamin is ok to take during treatment, it is high doses of anti-oxidints
    ie vitamin C, A & E. Also beta-carotine as these can interfere with the radiation. The truth is that there is
    No evidence that they interfere with chemo in fact they "MAY" help increse survival
    rates, tumor response and overall patients ability to tolorate treatment. These studies
    Were done at MD Anderson in 2007.
    I have expressed my opinions before and I an big into alternative and natural meds
    @s to go all alternative
    And not suffer from the radiation effects long & short term. As we know its all about
    money and the FDA are the most powerful dept in America.

    Rad&Chemo are the "gold standard" and they have saved lives, all on this board ( God bless)
    but I can still have my opinion about Standard & Alternative and I'll be alternative all day long.

    God bless
    Tonsil dad,

    Dan.

    I wish I had the nerve to
    I wish I had the nerve to try all natural first as well. I just can't do it though.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #37
    Ingrid K said:

    sam and phrannie
    you have both encouraged me to make a pot of Magic Broth....I never made it when I was going thru treatment a year ago, but you guys make it sound pretty good. I am only two months off of the feeding tube, so still trying to find different things to eat and trying to make sure I am getting all the right kinds of nutrients.

    I have a fellow survivor from the Oral Cancer Foundation coming to visit next weekend so it will be a good time to make the broth for both of us.

    Ingrid.....the Magic Broth will be with me
    long after treatment is over. I can see it as such a wonder base for other soups and stews...which are a staple at our house. My sister made enough of it for me, to last a couple weeks...and I can STILL taste it, even tho I'm about to start my 6th week of rads.

    Once it's made, you can Dr. it up, to fit your taste buds as they are now...maybe a little more salt...or add some veggies to it so there is something to chew :).

    Sam, I'm going to try some butter in mine, to get those extra calories...milk prodocts seem to have retained their taste so far, so that might add a little extra flavor, too.

    p
  • phrannie51
    phrannie51 Member Posts: 4,716
    #38
    Sam999 said:

    12 rads done

    Have developed some mouth sores (one on the side of the tongue on surgery side) and one on the roof of the mouth. Not taking any pain medication. Have started a combination of mugard and capahasol. My doc does not allow l- glutamine as she does not know about this.

    My thoat is hurting also, warm magic mineral broth with some salt and butter is helping.

    Luckily no mucous yet.

    My neck where the disection was is feeling a bit tight, doing regular excercises. Hoping it does not get worse over next few weeks.

    My skin is still doing very well, no signs of burns.

    My appetite is good and have good energy. Lost 2 pounds which seems okay with such limited carb intake. I do have about 30 pounds i can lose:)

    I pretty much sleep thru night except waking up for cople of mins one time to use bathroom and also do one more round of mugard.

    It would be great if more people who are inradiatiion right now put their updates as well.

    Thanks,
    Sam


    Sam

    My update going into my 6th week....
    Last week didn't count, as it was a four day week to begin with, and the rad machine was broke down for 3 of those days. It was probably a god-send to my neck, tho...it is crusty and weeping in a couple of places...and needed a break.

    I am using my tube for one meal a day...using two cans of Complete. Drinking Instant Breakfast VHC in the morning, and chasing it with a glass of whole milk....drinking Ensure a couple other times a day, also chasing with milk. Milk is a soother to my soft palate on top (must be taking a lot rads for NPC treatment). I drink a cup of broth everyday, also. It is an essential part of swallowing, and oh so tender...and I have two full weeks of rads left to do.

    So the big change between the end of week four, and now the end of week 5 is I'm almost all liquid diet and my neck is a mess. I've also noticed my jaws tightening up, so have have been stretching them MANY times a day. My advice to those in the beginning of rads...stretch your jaws, stretch your neck....stretch your tongue everyday. They never said diddley to me about this at radiation, but learned about it from one of the folks here in Kalispell who had throat cancer. At MD Anderson they push this stretching on a daily basis.

    p
  • Sam999
    Sam999 Member Posts: 319 Member
    #39
    phrannie51 said:

    My update going into my 6th week....
    Last week didn't count, as it was a four day week to begin with, and the rad machine was broke down for 3 of those days. It was probably a god-send to my neck, tho...it is crusty and weeping in a couple of places...and needed a break.

    I am using my tube for one meal a day...using two cans of Complete. Drinking Instant Breakfast VHC in the morning, and chasing it with a glass of whole milk....drinking Ensure a couple other times a day, also chasing with milk. Milk is a soother to my soft palate on top (must be taking a lot rads for NPC treatment). I drink a cup of broth everyday, also. It is an essential part of swallowing, and oh so tender...and I have two full weeks of rads left to do.

    So the big change between the end of week four, and now the end of week 5 is I'm almost all liquid diet and my neck is a mess. I've also noticed my jaws tightening up, so have have been stretching them MANY times a day. My advice to those in the beginning of rads...stretch your jaws, stretch your neck....stretch your tongue everyday. They never said diddley to me about this at radiation, but learned about it from one of the folks here in Kalispell who had throat cancer. At MD Anderson they push this stretching on a daily basis.

    p

    Pharannie,
    I am having
    Pharannie,

    I am having abrout 2-3 cups of broth a day becuase it makes my throat feel better. Do you have any pain in throat when you swallow? I am having that and it is worrying a bit. I hope my throat is not closing on me. Pain is not enough for me to take any meds yet.

    Same like you no one told me about excercises but i was looking up something this morning and someone told the importance of them. I googled anld found md anderson excercises. I am going to ask my doc to see if someone can show me the excercies to make sure i am doing them okay

    I am just using whey protein mixed in mango smoothie (noga-delite farms bought from costco).

    For fat, i got clarified butter from whole foods today and will be using that in broth. I also got organic cashews from whole foods and powered them really fine. I mix the powedred cashews in milk once a day and drink. I am able to taste some cashew flavor, give that this a try if you like cashews. I caan drink only 3-4 onces at time so just mix only those. I am planning to do the same with almonds. Tried avocodo as that is healthy fat too but did not like it.

    I want to try carnation VHC but amazon has only case of 24, do you know any store that sells less quantity for trial?

    Sam

    Sam
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #40
    I did not ask for this
    Sam999, phrannie51,

    It sounds like the advice is right on for you guys. You are entering the tough weeks, but they do come and go like those before.

    For the terrible neck burn I used Silver Sulfadiazine and came to rely on it heavily. Applied liberally, it coats your neck with a temporary skin. No hurt, no pain, just relief. It is a bit messy, but who cares, I went everywhere with it. Matter-of-fact the pain was so bad I could not go anywhere without it.

    As for Jevity, I went through cases of the stuff. Remember, Jevity is for the PEG not the mouth. That is unless you are a braver soul then I am. It got to the point where I did not like the smell of Jevity. Come on, as a cancer patient I did have limits.

    I never quit swallowing; this site had me whipped into shape to not let that happen. I continued to drink one meal a day along with quarts of water throughout treatments.

    Taste buds “gone” but are returning (had a small plate of Turkey w/mashed potatoes and veggie last night).

    Fatigue is front and center with the “new me”. I sleep great, but can not seem to get enough rest. Also, my stamina doing any physical labor is diminished, so I rest more often (AND ALWAYS HAVE MY WATER BOTTLE).

    During treatments I was the Magic Mouth Wash king. I blew through a good six pack of bottles while controlling the mouth and throat pain. Always at bed time, it bought me one hour of calm to fall asleep.

    Of course, with lots of water come lots of bathroom breaks. I think my bladder has gotten stronger (yeah, one good thing).

    Now make some hot tea, sit down and digest it all, ahhhhhhhhhh,

    Matt
  • phrannie51
    phrannie51 Member Posts: 4,716
    #41
    CivilMatt said:

    I did not ask for this
    Sam999, phrannie51,

    It sounds like the advice is right on for you guys. You are entering the tough weeks, but they do come and go like those before.

    For the terrible neck burn I used Silver Sulfadiazine and came to rely on it heavily. Applied liberally, it coats your neck with a temporary skin. No hurt, no pain, just relief. It is a bit messy, but who cares, I went everywhere with it. Matter-of-fact the pain was so bad I could not go anywhere without it.

    As for Jevity, I went through cases of the stuff. Remember, Jevity is for the PEG not the mouth. That is unless you are a braver soul then I am. It got to the point where I did not like the smell of Jevity. Come on, as a cancer patient I did have limits.

    I never quit swallowing; this site had me whipped into shape to not let that happen. I continued to drink one meal a day along with quarts of water throughout treatments.

    Taste buds “gone” but are returning (had a small plate of Turkey w/mashed potatoes and veggie last night).

    Fatigue is front and center with the “new me”. I sleep great, but can not seem to get enough rest. Also, my stamina doing any physical labor is diminished, so I rest more often (AND ALWAYS HAVE MY WATER BOTTLE).

    During treatments I was the Magic Mouth Wash king. I blew through a good six pack of bottles while controlling the mouth and throat pain. Always at bed time, it bought me one hour of calm to fall asleep.

    Of course, with lots of water come lots of bathroom breaks. I think my bladder has gotten stronger (yeah, one good thing).

    Now make some hot tea, sit down and digest it all, ahhhhhhhhhh,

    Matt

    How many calorie
    I've been using Complete (which is also tube-only), but have to do two cans, as it's only 250 calories per...and I'm trying to make even my liquid calories to go over the 500 calories mark.

    The Carnation Instant breafast VHC tastes almost exactly the same as Ensure (not bad at all), but it is a little thicker. 560 calories per can, and wash it down with a glass of whole milk, brings that total 740 calories. Ensure has 350 calories, but washed down with the milk brings that total to 530.

    Sam...if you can drink Ensure Plus, you can drink VHC...it's not bad at all (according to the 10 tastebuds I have left, anyway :))...Want me to send you a can?

    p

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