ok some collective help is needed

2»

Comments

  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #22
    Hey Kathy
    Finished my rad a year ago in May. I ended up holding my weight all through treatment but had problems afterward. I am 5'2" and I was down to 88lbs. Still have my peg in. I am having problems with stricture from radiation damage. Was stretched twice but still very narrow. My mouth still hurts. My tongue still feels scalded. They took out my left salivary gland during my neck dissection. The other was fried during radiation despite the amofostine injections to try and spare that one. My mouth is super dry.

    So eating has still been a challenge. I do an overnight pump with nutrin 1.5 I am just under 100lbs now. Things I can manage:

    avocados
    banana
    almond milk
    coconut milk yogurt
    Amish macaroni sala
    frozen peas
    puréed beans
    cream cheese
    tortilla shells or wraps
    pastina
    durkee green bean casserole
    soft cheese like ricotta
    really cooked mushy oatmeal
    potato salad

    I also have a food emulsifier and a juicer which I am trying to get back to using for fruits and veg but so much still hurts and burn my mouth. Good luck with everything.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #23
    Double post
    Sorry double post
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #24
    Hey Kathy
    Triple post. Site drives me nuts somedays.
  • friend of Bill
    friend of Bill Member Posts: 87
    #25
    Skiffin16 said:

    Muscle Milk
    Is that like Badger Milk.....just teasing, it struck me as funny for some reason..

    Badger /Muscle Milk!
    what is strange is that it is a non-dairy product. not too tasty but I threw a cup of choc milk in it this morning and it went down. Maintaining my wt but not gaining which I can't seem to do.

    Vince
  • Scambuster
    Scambuster Member Posts: 973
    #26
    Mucositis ??
    Hi Kathy,

    Just to clarify as I think many people use Mucositis to explain excessive production of mucus, while is is actually 'inflammation of the mucosa' which is all the tissue lining your insides from your mouth to your....butt. This would be mouth sores, ulcers etc. If that is the case, then L-Glutamine Powder is one of the best fixes. If it is excessive mucus he is suffering, then usually that is just a side effect we all have to deal with but it will heavily exacerbated by the intake 'dairy products' - so if he is using Ensure and similar, it will remain a problem. Find a dairy free alternative. I did and it worked. It's been posted here many times.

    On the weight side, his new weight is actually his correct weight according to BMI calculations though they do tend to slant to towards a slimmer weight than you might think is normal. Obviously he was either morbidly obese or Mr Universe before his weight loss.

    If he gets new fitted clothes, he may adapt better to being thin as he will probably never regain the weight he lost. That may be a good thing don't you think ?? Sweetblood has some good diet tips above. Avocados are one of the best healthy sources of fat. 1 a day is good and preferably the Haas Variety, the ones that turn purply black. Avo's are a great anti-cancer food. Stay with a healthy diet regardless. Better to be thin than load up with rubbish food to gain weight he may not even need.

    He can take a good Protein supplement to help with the lost muscle and the L Glutamine will also help there. To rebuild muscle, he will need to work out, no other way to do it. He should start out slow if he is still fatigued, but that need some resolving first.

    Overall, he sounds to be struggling and i would imagine as most of us have - suffered a beating from these treatments. His immune system is probably not not running on all cylinders. I used a carefully planned supplement program to repair mine and I feel better than I have for 15+ years on the energy side. Not saying that every one will be the same, but just sharing my experience. See my Expressions page if you are interested. He is still under repair so needs careful attention to his diet and overall well-being, not just weight gain. if the Doctors have no answers, maybe look to people who do, ie not Doctors.

    Hope he improves soon.

    Scam
  • thegirlfriend
    thegirlfriend Member Posts: 142
    #27
    Scambuster said:

    Mucositis ??
    Hi Kathy,

    Just to clarify as I think many people use Mucositis to explain excessive production of mucus, while is is actually 'inflammation of the mucosa' which is all the tissue lining your insides from your mouth to your....butt. This would be mouth sores, ulcers etc. If that is the case, then L-Glutamine Powder is one of the best fixes. If it is excessive mucus he is suffering, then usually that is just a side effect we all have to deal with but it will heavily exacerbated by the intake 'dairy products' - so if he is using Ensure and similar, it will remain a problem. Find a dairy free alternative. I did and it worked. It's been posted here many times.

    On the weight side, his new weight is actually his correct weight according to BMI calculations though they do tend to slant to towards a slimmer weight than you might think is normal. Obviously he was either morbidly obese or Mr Universe before his weight loss.

    If he gets new fitted clothes, he may adapt better to being thin as he will probably never regain the weight he lost. That may be a good thing don't you think ?? Sweetblood has some good diet tips above. Avocados are one of the best healthy sources of fat. 1 a day is good and preferably the Haas Variety, the ones that turn purply black. Avo's are a great anti-cancer food. Stay with a healthy diet regardless. Better to be thin than load up with rubbish food to gain weight he may not even need.

    He can take a good Protein supplement to help with the lost muscle and the L Glutamine will also help there. To rebuild muscle, he will need to work out, no other way to do it. He should start out slow if he is still fatigued, but that need some resolving first.

    Overall, he sounds to be struggling and i would imagine as most of us have - suffered a beating from these treatments. His immune system is probably not not running on all cylinders. I used a carefully planned supplement program to repair mine and I feel better than I have for 15+ years on the energy side. Not saying that every one will be the same, but just sharing my experience. See my Expressions page if you are interested. He is still under repair so needs careful attention to his diet and overall well-being, not just weight gain. if the Doctors have no answers, maybe look to people who do, ie not Doctors.

    Hope he improves soon.

    Scam

    mucositis
    he actually has both Scam. He gets the mouth sores, pain of inflammation, and the cotton mouth feeling as well. But Im thinking that its because everything is so imbalanced and not working in sync. Like when the timing belt is off on a car engine. car still runs, but not very good.

    He was 50 lbs overweight. he used to work out years ago and was like 170-180.
    he will not accept that the charts say he is at his prime weight now of 153. So then he has to eat.
    He doesnt sit around at all. He gets very fatigued on some days, others fairly.
    but not while sitting around. He might wake up that way at times, but usually he is out keeping busy trying not to think about everything. He does his yardwork, lawns etc, is a carpenter so he is always working to build things, trys to run out to do errands. he tries very hard to be normal active like before.
    but i do understand that even if he starts with 3 lb weights, or walking the treadmill for 5 min, that is still a start.
  • thegirlfriend
    thegirlfriend Member Posts: 142
    #28
    Scambuster said:

    Mucositis ??
    Hi Kathy,

    Just to clarify as I think many people use Mucositis to explain excessive production of mucus, while is is actually 'inflammation of the mucosa' which is all the tissue lining your insides from your mouth to your....butt. This would be mouth sores, ulcers etc. If that is the case, then L-Glutamine Powder is one of the best fixes. If it is excessive mucus he is suffering, then usually that is just a side effect we all have to deal with but it will heavily exacerbated by the intake 'dairy products' - so if he is using Ensure and similar, it will remain a problem. Find a dairy free alternative. I did and it worked. It's been posted here many times.

    On the weight side, his new weight is actually his correct weight according to BMI calculations though they do tend to slant to towards a slimmer weight than you might think is normal. Obviously he was either morbidly obese or Mr Universe before his weight loss.

    If he gets new fitted clothes, he may adapt better to being thin as he will probably never regain the weight he lost. That may be a good thing don't you think ?? Sweetblood has some good diet tips above. Avocados are one of the best healthy sources of fat. 1 a day is good and preferably the Haas Variety, the ones that turn purply black. Avo's are a great anti-cancer food. Stay with a healthy diet regardless. Better to be thin than load up with rubbish food to gain weight he may not even need.

    He can take a good Protein supplement to help with the lost muscle and the L Glutamine will also help there. To rebuild muscle, he will need to work out, no other way to do it. He should start out slow if he is still fatigued, but that need some resolving first.

    Overall, he sounds to be struggling and i would imagine as most of us have - suffered a beating from these treatments. His immune system is probably not not running on all cylinders. I used a carefully planned supplement program to repair mine and I feel better than I have for 15+ years on the energy side. Not saying that every one will be the same, but just sharing my experience. See my Expressions page if you are interested. He is still under repair so needs careful attention to his diet and overall well-being, not just weight gain. if the Doctors have no answers, maybe look to people who do, ie not Doctors.

    Hope he improves soon.

    Scam

    He Scam
    When you spoke of excessive mucous, is that the same as the 1 of two kinds of saliva that your body normally produces, the running watery kind and then the thick mucousy type?

    My boyfriend just went to the Oncologist today for his follow up apt, and he is 8 months out of treatment and he gave him another clean bill of health, although for the fatigue, he did take blood regarding the thyroid.

    But the dr told him that he didnt so much have mucositis, but just alot of extra thick saliva and that he will get better. I didnt have much time to speak to my boyfriend, but
    this is what he says the dr reported. stuck him in his nostrils, everywhere in his head where there is an orafice, manhandled him all over his head and neack, and is quite happy and content with the exam he gave my boyfriend.

    My boyfriend is quite content with his expertise, but the bedside manner sucks as he is just another dr with a God complex. So he doesnt like being questioned. But my boyfriend says he is the one that saved his life, so he is happy about that.


    Any feedback? what do you think of this mucous/saliva issue thing?

    Kathy
  • Scambuster
    Scambuster Member Posts: 973
    #29
    thegirlfriend said:

    He Scam
    When you spoke of excessive mucous, is that the same as the 1 of two kinds of saliva that your body normally produces, the running watery kind and then the thick mucousy type?

    My boyfriend just went to the Oncologist today for his follow up apt, and he is 8 months out of treatment and he gave him another clean bill of health, although for the fatigue, he did take blood regarding the thyroid.

    But the dr told him that he didnt so much have mucositis, but just alot of extra thick saliva and that he will get better. I didnt have much time to speak to my boyfriend, but
    this is what he says the dr reported. stuck him in his nostrils, everywhere in his head where there is an orafice, manhandled him all over his head and neack, and is quite happy and content with the exam he gave my boyfriend.

    My boyfriend is quite content with his expertise, but the bedside manner sucks as he is just another dr with a God complex. So he doesnt like being questioned. But my boyfriend says he is the one that saved his life, so he is happy about that.


    Any feedback? what do you think of this mucous/saliva issue thing?

    Kathy

    excess mucus
    Hi Kathy,

    No one so far I know has explained the high mucus production we all appear to suffer during and post treatment. I can only assume the secretions or mucus are either stimulated in response to the radiation i.e. more mucus ois produced OR the maybe a drop in the amount of the watery part of the saliva and mucus is reduced, making perhaps a normal quantity behave differently ie thicker and stickier. THis would be mucus produce in the sinous and nasal areas.

    In the mouth cavity, 2 of the 3 pairs of main salivary glands 1. Submaxillary and 2. Sublingual - produce a high mucus component while the 3. Parotid glands less so(more of the watery saliva). If the Parotid glands took more of a direct hit from the radiation, it would seem logical that this would leave one with relatively more of the 'thicker/stickier' saliva.

    Just my laymans attempt to explain this. Your B'Friends ENT should be able to explain with more cetainty (we hope).

    Regds
    Scam

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