Saliva Glands

135

Comments

  • Greend
    Greend Member Posts: 678
    #42
    Skiffin16 said:

    Cream of Wheat
    Hi ya Greend, was another of mine that I liked, sometimes with a little honey, though I couldn't taste the sweetnes of the honey. I did ghet enough out of the honey's fragrance that it seemed to make it a little more tasty.

    Cream of Wheat
    I agree and didn't mention honey...still use it. Later I would put a handfulf of raisens in the water before it started to boil which made them tender and easy to swallow. Have no idea if they helped but it was like a small victory to eat something new :>) (I also shaved my head before chemo started because I was pissed and refused to let the chemo take it but then that is another story)
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #43
    Scambuster said:

    Stop Burning
    Hi Sweetblood,

    I have responded earlier to your problem re burning in the mouth and I mentioned to try Glutamine Powder.

    I am curious if you have tried it. I suffered the bad burning with even water too for a long time after treatment finished. I then found the that mixing a teaspoon of the Glutamine Powder in a glass of water didn't burn and it would also neutralize any burn I was getting when trying other foods / drinks.

    The stuff has many other very positive healing effects (google it).


    Best regds
    Scambuster

    PS. Congrates on getting some cereal down. I also used baby cereals (ones that come in sachets) ealier on as they are good for calories and some gentle fibre.

    glutamine
    Yes, I did look it up. I even did some pricing on it and what I found was it was pretty expensive. The packets I saw were almost $100. I am too afraid to spend that much money on something I am not sure I can tolerate. We have a store about 30 miles from me, I am out in the sticks, that sells Heathfoods, vitamins, and organic stuff. I am hoping that I can ask the girls there about and see if I can get a little bit to try out. I am not driving, and it sucks because I don't get rides from people very often. Everyone is so busy with their own lives. I have been wanting a haircut for a month. :( My friend comes up on sundays sometimes, but a lot of things, like that store, and the hair cut place are closed. I have not forgotten though. Thanks.
  • Greend
    Greend Member Posts: 678
    #44
    sweetblood22 said:

    glutamine
    Yes, I did look it up. I even did some pricing on it and what I found was it was pretty expensive. The packets I saw were almost $100. I am too afraid to spend that much money on something I am not sure I can tolerate. We have a store about 30 miles from me, I am out in the sticks, that sells Heathfoods, vitamins, and organic stuff. I am hoping that I can ask the girls there about and see if I can get a little bit to try out. I am not driving, and it sucks because I don't get rides from people very often. Everyone is so busy with their own lives. I have been wanting a haircut for a month. :( My friend comes up on sundays sometimes, but a lot of things, like that store, and the hair cut place are closed. I have not forgotten though. Thanks.

    Sweetblood Glutamine
    I don't know anything about it but I did find it a lot cheaper just searching the web. May not even be what ya'll are talking about.

    http://www.shopperschoice.com/item_name_Optimum-Glutamine-Powder-300-Grams_item_335613.html?source=gan
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #45
    Greend said:

    Sweetblood Glutamine
    I don't know anything about it but I did find it a lot cheaper just searching the web. May not even be what ya'll are talking about.

    http://www.shopperschoice.com/item_name_Optimum-Glutamine-Powder-300-Grams_item_335613.html?source=gan

    thank you! maybe i was
    thank you! maybe i was looking at larger quantity packages? not sure how much 300grams is or how many grams the more expensive ones were. i have my appt with gastro and nutrition on 2-26. i am going to ask them about it. i would try it for that price. thanks.
  • s
    s Member Posts: 6
    #46
    sweetblood22 said:

    many thanks
    Thank you so much for starting this thread. I do not want to sound like a whiney baby, but since you started this in regard to my saliva issue, i will go into a bit more info. One of my issues is that everything still burns my mouth. Water burns. I have tried some Biotene products but hurts my mouth to the point of making my eyes water and I end up with my nose running and eyes tearing up from the pain.

    Even things that you would normally think would be soft and easy to eat are not. I keep trying things, but I am not finding much of anything that does not hurt. Even mashed potatoes feels like fine grit sandpaper. I am sure you are all well aware of what it's like. Sometimes people ask me what the pain is like. I sort of think it's like when you scaled your tongue on boiling coffee, or lava hot cheese, but waayyy worse.

    This has been the hardest thing for me. It is hard to explain to people who have not been thru this. they just "don't get it." I am crying on a weekly basis about the frustration of missing food, and eating and sitting at the table eating with my family.

    I had to have two dillitations to stretch my esophogus, I realize I am lucky to even be able to swallow some bites of some food now. I could not swallow food at all over Christmas. We had some relatives up that had not seen me in a while and wanted to know why I was not going to sit at the table for Christmas dinner. Their veiw was that I "should be polite" and at least sit there and catch up. I almost came unglued. I am glad that my dad handled it for me because I thought the top of my head was going to pop off. He had to explain to them again that I had not eaten ANY food since 4-20-09. There were times when I could smell my gram toasting a bagel, and I would just cry.

    I am a little embarrassed to type this, but honestly, I have not really ever cried about my cancer or getting diagnosed. I am struggling more with this food thing. It is killing me that I cannnot eat normally. I am already on Lexapro, and I don't believe that I am experiencing depression. Just intense frustration and sadness over something I so enjoyed and cannot do any longer. I was an excellent cook, and so is my dad, and we are sicilian, and food is just so tied to so much of my life and memories.

    So, please, if you have any ideas or things that work for you, lemme know. I will try them. I am going to google the sea minerals, or whatever that is. Will try that. I am still using baby tooth paste and children's flouride ACT. I was afraid of flouride, but I am more afraid of losing the teeth I have left that they did not pull before my radiation. Even the baby products hurt, but I magic swizzle before to tolerate the dental care.

    Even the doctors are frustrated over my lack of healing. I also have Fanconis Anemia. Which apparently is how I developed the Head and Neck Cancer. They are fond of blaming my slow healing and other issues on the Fanconis.

    Oh, and what does NCP stand for? I feel so lame, I cannot figure it out. I don't think I ever said my diagnosis. Matastatic Squamous Cell Head and Neck Cancer with Unknown Primary. Stage IV.

    Painful mouth
    I went through 32 rounds of radiation. The inside of my mouth was raw, I kept getting ? yeast infections. The radiologist gave me prescriptions for one medicine that worked for a while, but then changed it to another that did absolutely nothing. Then I went to an infections disease doctor who agreed with me that my mouth was just burned up.

    I had a feeding tube for 8 months..... The first thing I could eat was a PET RITZ banana cream pie.... Bought 6 put them in the freezer, removed the crust and ate them every meal. The next and probably the best thing ever is a Wendy's Frostie..... Chocolate,

    For Pain, the only thing that helped me was Liquid Lidocaine- I had to carry it around everywhere.... I would squirt into my mouth many times a day. All those swish and miracle mixtures did not work.... Many burned....... I use GEL Kam as a fluoride treatment. EVERY night with a special tray. I think it is better than just brushing. There is an outstanding physician at Sloan Kettering named Dr. Hearn. I actually went there to get a tooth pulled....... He might could help you. Any cancer center should have a DENTAL oncologist.

    I understand your frustration. It has been 7 years for me and I still feel the ridges on the inside of my mouth. My jaw won"t open wide and yes going to the dentist is hell..... but try one food at a time..... brocolli cheese soup, I actually had a lot of glucerna and made a shake out of it. Ice Cream, Quiche is good, if you can eat the crust... Banana pudding, popsickles,

    I remember wanting food so bad, my husband drove from one end of town to the other and I could not find anything to eat.
    Then I discovered buffets, try many things and eat what you can...... vegetables are always on a buffet.

    I use Biotene to brush my teeth, and then oral balance. I use Oral Balance mouthwash,

    I was depressed during my radiation and asked one of the radiologist how long it would be until I could eat a steak....He cracked a smile and said, maybe you should try lobster first. He was right. Lobster is soft . Try things with lots of liquid..... gravy, eggs, eggs with cheese.

    I still can not eat turkey, chicken, not so good with bread. I am so much better with food than I once was..... It takes time... Try a Chocolate or vAnilla Frosty......... Ice cream or banana pudding........ and if you have to eat it over and over,,,, it is a start.
    Hope this helps.... My prayers are with you........ I hope you can find just one or two foods that you can enjoy..... JELLO?

    ";
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #47
    s said:

    Painful mouth
    I went through 32 rounds of radiation. The inside of my mouth was raw, I kept getting ? yeast infections. The radiologist gave me prescriptions for one medicine that worked for a while, but then changed it to another that did absolutely nothing. Then I went to an infections disease doctor who agreed with me that my mouth was just burned up.

    I had a feeding tube for 8 months..... The first thing I could eat was a PET RITZ banana cream pie.... Bought 6 put them in the freezer, removed the crust and ate them every meal. The next and probably the best thing ever is a Wendy's Frostie..... Chocolate,

    For Pain, the only thing that helped me was Liquid Lidocaine- I had to carry it around everywhere.... I would squirt into my mouth many times a day. All those swish and miracle mixtures did not work.... Many burned....... I use GEL Kam as a fluoride treatment. EVERY night with a special tray. I think it is better than just brushing. There is an outstanding physician at Sloan Kettering named Dr. Hearn. I actually went there to get a tooth pulled....... He might could help you. Any cancer center should have a DENTAL oncologist.

    I understand your frustration. It has been 7 years for me and I still feel the ridges on the inside of my mouth. My jaw won"t open wide and yes going to the dentist is hell..... but try one food at a time..... brocolli cheese soup, I actually had a lot of glucerna and made a shake out of it. Ice Cream, Quiche is good, if you can eat the crust... Banana pudding, popsickles,

    I remember wanting food so bad, my husband drove from one end of town to the other and I could not find anything to eat.
    Then I discovered buffets, try many things and eat what you can...... vegetables are always on a buffet.

    I use Biotene to brush my teeth, and then oral balance. I use Oral Balance mouthwash,

    I was depressed during my radiation and asked one of the radiologist how long it would be until I could eat a steak....He cracked a smile and said, maybe you should try lobster first. He was right. Lobster is soft . Try things with lots of liquid..... gravy, eggs, eggs with cheese.

    I still can not eat turkey, chicken, not so good with bread. I am so much better with food than I once was..... It takes time... Try a Chocolate or vAnilla Frosty......... Ice cream or banana pudding........ and if you have to eat it over and over,,,, it is a start.
    Hope this helps.... My prayers are with you........ I hope you can find just one or two foods that you can enjoy..... JELLO?

    ";

    Painful mouth
    S, thank you for sharing your story with me. Isn't it funny how different, but the same we are. We all have the same side effects, but what one can eat, another cannot. I can see I just have to keep trying stuff. I tried tuna fish today. Not so good. I am working on a banana now instead.

    My frame of mind about lack of eating is a lot better since joining here. To be honest, I was thinking why did I bother to fight for this kind of life. To me not eating is not a quality life. Being surrounded by people who mean well but haven't got a clue is not easy either. It helps to correspond with people in the same boat.

    I was just so incredibly frustrated with my healing, and the fact that although I did research, and spoke to doctors I don't think they gave me the bottom line on how painful, and possibly permenent the side effects could be. I feel like I have had a bit of a weight lifted now.

    I got a good product from my dentist. GC Dry Mouth Gel. Works great. I could sleep forr more than an hour before waking up with a totally dry mouth. It does not burn at all. I had forgotten how great a "moist" mouth feels.

    I also noticed last night that my tongue hurts less. The back half does not hurt as much anymore, and feels more normal. The tip still really hurts, but it seems like something good is happening.
  • HAWVET
    HAWVET Member Posts: 318
    #48
    Greend said:

    Cream of Wheat
    I agree and didn't mention honey...still use it. Later I would put a handfulf of raisens in the water before it started to boil which made them tender and easy to swallow. Have no idea if they helped but it was like a small victory to eat something new :>) (I also shaved my head before chemo started because I was pissed and refused to let the chemo take it but then that is another story)

    Straws
    Another recommendation is to use a straw when drinking. You can bypass a lot of your mouth area and only feel the aches in your throat.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #49
    HAWVET said:

    Straws
    Another recommendation is to use a straw when drinking. You can bypass a lot of your mouth area and only feel the aches in your throat.

    Straw
    My doctor told me today I need to drink more water daily, I told him I can’t because I have problems holding my head back to drink, He said

    Use a Straw,

    Why did I not think of that.

    Thanks HAWVET
  • Greend
    Greend Member Posts: 678
    #50
    Hondo said:

    Straw
    My doctor told me today I need to drink more water daily, I told him I can’t because I have problems holding my head back to drink, He said

    Use a Straw,

    Why did I not think of that.

    Thanks HAWVET

    Air Hunger
    One of the things they found recently with me is that I suffer from what they call "air hunger" when I try and swallow. Now it has been a long time since my last treatment and this cropped up within the past year or so. Even a straw doesn't work with that. At times I simply have to take a deep gulp of air while trying to swallow to get the food down. Sometimes I have to try 5 -10 swallows to get the food down.

    Oh well...

    Just a part of the new NORMAL :>)
  • janymac
    janymac Member Posts: 35
    #51
    Greend said:

    Air Hunger
    One of the things they found recently with me is that I suffer from what they call "air hunger" when I try and swallow. Now it has been a long time since my last treatment and this cropped up within the past year or so. Even a straw doesn't work with that. At times I simply have to take a deep gulp of air while trying to swallow to get the food down. Sometimes I have to try 5 -10 swallows to get the food down.

    Oh well...

    Just a part of the new NORMAL :>)

    food and drink
    Have to say reading all this takes me right back, but also some of it is like daily life for me now too. Re: the saliva - I have really only found plain water helps, much better than all these substitutes. Am starting to use things like biotene now I can tolerate them as it have a lot of protective stuff in it for your teeth that is missing from your mouth if you have no saliva. 8 years on, I have recently found that there is a slight improvement in sliva production and there is enough to keep my mouth comfortable when I am not talking or moving about much, which for me is a big improvement. Saliva problems for some people are temoparary, but a few, like me, have continued problems.This will sound disgusting, but I have learnt to use any thing moist from my chest, nasopharyngeal space to its advantage to mositen the mouth - a bit like recyling. I have a constant supply of water with me - try to make it tap water whenever possbile as it has fluoride in it (in the UK)- Bottled mineral water doesn't.

    Taste has always been peculiar since treatment. Still cannot bare anything fruity unless it is very heavily sweetened it tastes so bitter.At first I found all foods tasted very salty indeed, but this got better with time. Tea and coffee, water, milk and beer are the only things I drink - anything fruity or fizzy ir flavoured I find uncomfortable in my mouth, although they no longer burn. Wine does burn my mouth and throat, though have noticed that I can take a bit of medium sweet wine with food very recently, although have to be careful not to use it to try and get the food down.

    I think my adivce is, at the moment only take things you know you are good with. It takes so much energy to get your food and drink down, that you don't have energy to waste on stiff you know will burn. Give them a go now and again, but don't worry about it.

    Sweetblood, view your PEG as your friend - rather shocked you were not given a pump from the outset. I had one in hospital and took one home.Found, however that I couldnot hear the alarm when it went offf (have got very poor hearing since treatment), but the company sent me one that vibrated when I had lain on the lead, which stoped my family getting cross with me. PEGs are very difficult to pull out, so don't worry about that, you are unlikley to pull it out in bed because if you were anything like me you will feel it being pulled and wake up.Have to admit there are somedays when I would have liked my PEG back - I asked for it to be taken out far too early as I was having real problems with it getting infected. When it was taken out I lost heaps of weight as I couldnot keep up with the amount I had to eatto keep going. Can I say , that if you are only 8 months post treatment you are doing well to get what you down you and it does slowly get better. You have to not expect to be able to eat what you did before your treatment, you need to find a new eating plan at least for the time being.I found I made loads of mistakes when I tried to start eating and have learnt so much through trial and error.Nowadays, although I eat in my own peculiar way, I get more than enough food down me to the extent I need to think about losing weight now!I need to rethink my eating strategy as I tailor it to the way my swallowing and taste buds are now.

    Greend I think your philosophy of "Just a part of the new NORMAL " is spot on. I sort of see it that post treatment I have had to start doing things I would never have thought of doing before, but it is now normal for me, and although I do still wartch in evny at people who can just walk down the street with a hamburger and shovel it into their faces with no need for careful chewing, swallowing, water, what I do now is a very normal part of me.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #52
    Greend said:

    Air Hunger
    One of the things they found recently with me is that I suffer from what they call "air hunger" when I try and swallow. Now it has been a long time since my last treatment and this cropped up within the past year or so. Even a straw doesn't work with that. At times I simply have to take a deep gulp of air while trying to swallow to get the food down. Sometimes I have to try 5 -10 swallows to get the food down.

    Oh well...

    Just a part of the new NORMAL :>)

    Air Hunger

    That’s a new one; I guess when it starts to happen to me I will know what to call it. My new problem is very low blood pressure like 80/47 at times and feeling faint, my heart doctor told me it was damage cause by radiation I had 5 years ago. I wonder sometimes what’s next.

    Yep this new normal is a real problem sometimes

    Take care
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #53
    sweetblood22 said:

    yay!
    i ate cereal today. was never much of a cereal eater, but it hit the spot. i had to wait for it to go mostly soggy though. still a triumph! and my boost breeze came already. like two days ago i ordered it. that was fast. i am hoping i will still like it, and it won't burn still. stuff aint cheap, but it is worth it for a different taste.

    cereal
    Congratulations, Sweet!!!! That is great news. Hopefully, it will only get better from here. Hang in there. My last treatment was Oct, 2009, and I eat some but still have my tube also. You go girl !!
    God Bless,
    Debbie
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #54
    Hondo said:

    Air Hunger

    That’s a new one; I guess when it starts to happen to me I will know what to call it. My new problem is very low blood pressure like 80/47 at times and feeling faint, my heart doctor told me it was damage cause by radiation I had 5 years ago. I wonder sometimes what’s next.

    Yep this new normal is a real problem sometimes

    Take care

    BP
    Hondo, I'm sorry to hear about your blood pressure. Did your doc give you meds or what to get it back to normal? Have you had a heart attack? I will add this to my prayers for you also. I hope they get it back to normal soon, please keep us posted.
    I had a heart attack 13 years ago (2 mo after turning 40) and died twice before they finally got me stable. Now I wonder if I will go thru that as well. If it isn't one thing, it is 20 more but at least I'm here to worry about it...lol.
    I pray God will take care of you and that He will bless your doctor with the knowledge he needs to treat you promperly.
    God Bless,
    Debbie
  • pk
    pk Member Posts: 192
    #55
    Hondo said:

    Vegetarian
    I am moving close to being a vegetarian again as I find I don’t like the taste of meat. I do eat chicken and turkey now and then, what I do find I love most is Fish. On organic we try our best to buy organic, not because it has any more nutrition’s in it then non- organic but because it has less pesticides and chemicals added to it.

    On the Sea Minerals it is very strong stuff, so go easy on it at first, begin with just a few drops in some water and swish it around in the mouth and under the tongue and them swallow it, add a few more drops as you get uses to it.

    I am almost 5 years passed treatment and my taste for fruits it just as good if not better then ever. I am planning on going back home in August sometime and will be staying in the farm house again as I loved it so much last year. Everything on the farm is organic so you can eat it right off the tree, last year I lived on Papayas, Bananas, Avocados, Mangos, and Star fruit. That was the best I ever felt in my live it really cleaned out my body.

    Hope you both enjoy the trip to St Simons Island, God bless and protect you both on your trip

    Hondo
    Thanks so much for all your blessings. We are getting ready to leave and are soooo looking forward to these weeks away. I enjoyed reading a bit about how you eat. Bob eats meat, but says he too tastes fish very satisfactorily. So as long as we are going to the coast - fish it is.
    Bob had an ENT appt. yesterday and his ENT feels that his mouth becomes a bit more moist with presentable saliva each month. As for taste, he says it's still to early to tell how much he will get back, but until he notices no change at all, he can hope for it to increase slowly.
    I envy your Aug. trip to Honduras as it is lovely there. Will you and your wife both go?
    I will take my laptop with me on vacation and will check the sight every now and then, but am going to try and forget cancer for the weeks we are gone. Bob does a much better job of this than I do. He truly, as of now, does not obsess about it and what his future might be. He's not interested in doing alot of research concerning his cancer or the prognosis. He totally lives in the present and finds peace in his life right now. I am very happy for him. Of course it helps that he has great Docs whom he trusts completely!
    Take care my friend. Keep up your incredible work on this site. You feel like family to me and many more who log in regularily.
    Phyllis
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #56
    debbiejeanne said:

    cereal
    Congratulations, Sweet!!!! That is great news. Hopefully, it will only get better from here. Hang in there. My last treatment was Oct, 2009, and I eat some but still have my tube also. You go girl !!
    God Bless,
    Debbie

    Pulling out PEG
    I know that it is hard to pull out, my nutrition nurse changes it every three months, and it hurts like heck coming out of there. GAH! I am still scared though, because I sleep with my hairless chinese crested, and the last thing I need is him getting tangled up in there. I did come up with the idea to keep the sheet betweeen us. Plus, with my night sweats, that is a little less hot too. Cresteds are like hot water bottles! So, I get under covers, and pick up everything but the sheet and let him in there. Occasionally he does get out while I am sleeping, and he manages to get himself back in, but he ends up under everything sometimes.

    I do understand the tube is my friend. I would have died without it. I guess I am just afraid that I am not going to get rid of this thing. I am almost 93 lbs now. Got a while to go yet.

    Debbiejeanne, sometimes you have to celebrate every little victory. LOL. Getting down a full serving of any food is a rare thing for me. It takes me sooo much liquid to swallow stuff that I am full after getting down only a couple of tablespoons of food. That was a first for "crunchy" type cereal.
  • dennis318
    dennis318 Member Posts: 349 Member
    #57
    Phlem
    Can anyone help me with the Phlem problem, I was told this would eventually stop, but when? This was part of the radiation to my throat, and was told this is a natural aid to heal my throat form being cooked, my outside of my throat has healed, but the doctor said the inside is 3 times worst and would take longer...I find this embarassing, having to take a cup, tissues and hoping one day it will stop, drinking water seems to egg it on, and produce more, but I can't stop drinking, epsecially in the morning when my throat is so sore, any positve or up lifting encouragement you could share..please do. Thanks Dennis, Made it Threw my Chemo and radiation, 4th week into recovery!!!
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #58
    dennis318 said:

    Phlem
    Can anyone help me with the Phlem problem, I was told this would eventually stop, but when? This was part of the radiation to my throat, and was told this is a natural aid to heal my throat form being cooked, my outside of my throat has healed, but the doctor said the inside is 3 times worst and would take longer...I find this embarassing, having to take a cup, tissues and hoping one day it will stop, drinking water seems to egg it on, and produce more, but I can't stop drinking, epsecially in the morning when my throat is so sore, any positve or up lifting encouragement you could share..please do. Thanks Dennis, Made it Threw my Chemo and radiation, 4th week into recovery!!!

    dennis318
    Ah, yes. The cup and tissues. I used a cup and napkins. Man people look at you like you are nuts. At the height of it I was using more than a packet of a hundred napkins a day, and i had to keep clean towels over my pillow cases at night, because that mucous stains. As your saliva comes back, it will get better. I am healing very slowly, but i think i was napkin free by 6 -7 months out. but as i said, i am not healing quickly. you will probably heal faster than me. my RO told me to try mucinex, but i could not use it. then i had no saliva, and no mucous, and my mouth was completely dry, cracking and bleeding.
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #59
    pk said:

    Hondo
    Thanks so much for all your blessings. We are getting ready to leave and are soooo looking forward to these weeks away. I enjoyed reading a bit about how you eat. Bob eats meat, but says he too tastes fish very satisfactorily. So as long as we are going to the coast - fish it is.
    Bob had an ENT appt. yesterday and his ENT feels that his mouth becomes a bit more moist with presentable saliva each month. As for taste, he says it's still to early to tell how much he will get back, but until he notices no change at all, he can hope for it to increase slowly.
    I envy your Aug. trip to Honduras as it is lovely there. Will you and your wife both go?
    I will take my laptop with me on vacation and will check the sight every now and then, but am going to try and forget cancer for the weeks we are gone. Bob does a much better job of this than I do. He truly, as of now, does not obsess about it and what his future might be. He's not interested in doing alot of research concerning his cancer or the prognosis. He totally lives in the present and finds peace in his life right now. I am very happy for him. Of course it helps that he has great Docs whom he trusts completely!
    Take care my friend. Keep up your incredible work on this site. You feel like family to me and many more who log in regularily.
    Phyllis

    trip
    have a wonderful trip, you both deserve it. well talk when you get back. You will have to tell us all about it!
    God Bless,
    Debbie

    ps, any way I could squeeze in your suitcase?....lol
  • Greend
    Greend Member Posts: 678
    #60
    sweetblood22 said:

    dennis318
    Ah, yes. The cup and tissues. I used a cup and napkins. Man people look at you like you are nuts. At the height of it I was using more than a packet of a hundred napkins a day, and i had to keep clean towels over my pillow cases at night, because that mucous stains. As your saliva comes back, it will get better. I am healing very slowly, but i think i was napkin free by 6 -7 months out. but as i said, i am not healing quickly. you will probably heal faster than me. my RO told me to try mucinex, but i could not use it. then i had no saliva, and no mucous, and my mouth was completely dry, cracking and bleeding.

    Spit
    I wish I could spit. Oh well maybe I'll just drink a beer instead.

    Guess my priorities are all messsed up.

    :>)
  • dennis318
    dennis318 Member Posts: 349 Member
    #61
    sweetblood22 said:

    dennis318
    Ah, yes. The cup and tissues. I used a cup and napkins. Man people look at you like you are nuts. At the height of it I was using more than a packet of a hundred napkins a day, and i had to keep clean towels over my pillow cases at night, because that mucous stains. As your saliva comes back, it will get better. I am healing very slowly, but i think i was napkin free by 6 -7 months out. but as i said, i am not healing quickly. you will probably heal faster than me. my RO told me to try mucinex, but i could not use it. then i had no saliva, and no mucous, and my mouth was completely dry, cracking and bleeding.

    Phlem
    Thanks sweetblood, appreciate your input,it's better somedays, and is like a facuet others,i fought the stomach tube, lost 40lbs, but have recently been able to stay stable, and upgrade to a hotdog and eggs, soft toast over toast. drowned in butter, my taste buds are coming back slowly, and hoping that my raspy voice will get better soon, i ended up by radiation and chemo 4 weeks ago, and still do not have good voice quality, you get down in the dumps, the soreness and, but i wouldn't go back to the treatments, you hang in there, I know it's tough, but it sounds you are getting a handle on it, I can tell your a fighter. Dennis

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