Saliva Glands

sweetblood22

MarineE5 said:

Another Question if you don't mind : )
Sweetblood,

Sounds like you have had a rough road so far, but I can also see that you are a fighter. That is a very good thing.

I noticed in your reply to Denis,you stated " I would put the formula in with the syringe and end up with nausea and vomiting. The weight plumeted, and I could not use the peg that way."

My question is this. Did you remove the plunger and hook up the Syringe at the end of the Tube and hold it slightly above the entrance point of the PEG and then slowly pour your nutrition into the Syringe?( Gravity Feeding) I would do this with my Nutrition, Nutrin 1.5 and would gravity feed myself with 2 cans at a time, taking 10-15 minutes per can. I never had any trouble with nausea and vomiting.

I could adjust the speed in which the nutrition would flow by raising or lowering the syringe level in relationship to the PEG stub entrance in my stomach. I'm just not sure if you used the plunger in the syringe to push the nutrition in like we do when we flush the PEG Tube. We aren't suppose to push the nutrition in quickly or the results could be nausea and vomiting. Just throwing that thought out there for you or anyone else as a reminder.

When I came home from the Hospital, they sent someone out to give me a pole on wheels with several hooks on it and several bags for me to put the cans of nutrition in. I tried one can that way the first day and it took 1 1/2 hours for one can to go in. I would have been sitting in a chair for roughly 12 hours a day to feed myself as I had a Tracheotomy at the time besides the removal of part of my tongue and neck disection. I did the gravity feed and it worked well for me.

I see that you are able to eat something orally and that is great news, keeping the swallowing motion is very important for us. I hope that you gain some more weight back and keep taking in more nutrition. Hopefully in a few weeks you will begin to feel better as time passes.

My Best to You and Everyone Here

Gravity Feeding
No, Marine, that was not how I was feeding. They just gave me a syringe, and I just put it in that way. They never told me about the gravity feeding thing until the damage was done. I am not sure why I tolerated using the syringe in that way all thru radiation. But now, it is what it is. Putting it in too fast that way is not a plan. I was putting it in the way we do when we flush the tube. They never told me any other way.

I really like this machine. I have a new clean bag every night. The tube stays connected well. I am just a bit uncomfortable when sleeping. I am one of those people that tosses and turns a lot at night and I am scared of moving around too much and pulling out my PEG, or getting tied up in the line. I am not a sound sleeper and any thing out of the norm bugs me. LOL. So delicate. insert eye roll here.

Greend

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.

What to eat
I too went through this problem and I lived on Weight Gain 2000. My two teenage sons were my care givers and would mix up my "milkshake" every day. Sometimes they thought they would be doing me a favor by slipping someting into the drink however every time it burned - epecially bananas; now I laugh about it but not then. I am now having problems again and something I learned is to warm the milk before you mix it, I promise you it makes a big difference. Also I bought one of those old fashioned milk shake machines to blend the materials.

Concerning family - we have all been there. I can't count the times I have sat at a table, eat maybe the mashed potatos (grits go down well but not that many calories), drink chicken noodle soup and smile.

Melissa_Mae

Greend said:

What to eat
I too went through this problem and I lived on Weight Gain 2000. My two teenage sons were my care givers and would mix up my "milkshake" every day. Sometimes they thought they would be doing me a favor by slipping someting into the drink however every time it burned - epecially bananas; now I laugh about it but not then. I am now having problems again and something I learned is to warm the milk before you mix it, I promise you it makes a big difference. Also I bought one of those old fashioned milk shake machines to blend the materials.

Concerning family - we have all been there. I can't count the times I have sat at a table, eat maybe the mashed potatos (grits go down well but not that many calories), drink chicken noodle soup and smile.

How Long Until Taste Comes Back???
I just completed neutron therapy, a type of ratiation. My sense of taste is horrible! But everything smells so good! Everything is bitter/metal tasting or just nothing. Except I can taste some fruit. I'm trying to eat a balanced diet, but I feel like I'm just choking stuff down.

Melissa_Mae

Greend said:

What to eat
I too went through this problem and I lived on Weight Gain 2000. My two teenage sons were my care givers and would mix up my "milkshake" every day. Sometimes they thought they would be doing me a favor by slipping someting into the drink however every time it burned - epecially bananas; now I laugh about it but not then. I am now having problems again and something I learned is to warm the milk before you mix it, I promise you it makes a big difference. Also I bought one of those old fashioned milk shake machines to blend the materials.

Concerning family - we have all been there. I can't count the times I have sat at a table, eat maybe the mashed potatos (grits go down well but not that many calories), drink chicken noodle soup and smile.

How Long Until Taste Comes Back???
I just completed neutron therapy, a type of ratiation. My sense of taste is horrible! But everything smells so good! Everything is bitter/metal tasting or just nothing. Except I can taste some fruit. I'm trying to eat a balanced diet, but I feel like I'm just choking stuff down.

sweetblood22

Melissa_Mae said:

How Long Until Taste Comes Back???
I just completed neutron therapy, a type of ratiation. My sense of taste is horrible! But everything smells so good! Everything is bitter/metal tasting or just nothing. Except I can taste some fruit. I'm trying to eat a balanced diet, but I feel like I'm just choking stuff down.

Melissa Mae
Welcome to our world. I am like 8 or 9 months out of radiation and mine has not really come back yet either. Like you, I seem to taste sweeter things, like fruit, better. I just made a fresh batch of home made apple sauce. I was never a fan of sweet stuff, dispite my screen name, so it's kind of hard. I was always a savory eater. Now everything burns and tastes salty. Or like wall paper paste.

I tried and ate two scallops today. It took me a while to get them down, and they really did not taste like much. I am hearing from others here and at hospital that it can take a year or more. We just have to hang in there and pray for patience. Which has never been a strong point for me.

I could not smell for a while, but I can now. It is pretty frustrating when you can smell food and cannot eat it, and the things you can eat, you cannot taste anyway. I am glad that you can eat though. It is hard to eat a balanced diet. I think a lot people would agree that they feel like they are just choking food down.

I was always a person that lived to eat. Now I have to just eat to live. Frustrating.

pk

Pam M said:

So Jealous
St. Simon's Island? Went there years ago for Spring Break. LOVED it! Have a wonderful time

Pam
St. Simons is awesome, I agree. We will make our 3rd trip this year. Love to spend March and most of April there. The azaelas and wysteria are in bloom and it is so beautiful. Love to take a book and head to the beach to read, and head out for a walk in the morning, then stopping at the local coffe house. Bike riding is great too - NO HILLS!!!! Life is good. Bob is doing well so we have much to celebrate and be thankful for!!!
Phyllis

pk

Dazey said:

flavors
I have been drinking a lot of Sobe vitamin water - especially the pear flavor - it is mild enough to go down easily, yet flavored enough to taste good - besides, it is loaded with vitamins. It is available at my local grocery store, quick marts and pharmacies. Dazey

Sobe Water
Dazey,
Bob tried Sobe yesterday - both the pear and the blackberry/blueberry. He could taste the flavor and enjoyed it. Thanks for the tip.
Phyllis

Hondo

pk said:

Good Morning, Hondo and All
Thanks for the tips. Will order some Stoppers and we are interested in learning more about The Sea Mineral Boost.
We leave for St. Simons Island, GA on the 26th and will stay until around April 17th. We are looking forward to the drive as well as the change of scene. No Drs. appts. either - the best!!!!!

Another question for you. Are you still practicing your vegetarian ways? Do you eat all organic? Bob, will NEVER become a veg., but we are trying to incorporate better nutrition into our meals - more vegies etc. He still hasn't found any fruit that tastes good enough to eat. Just gotta keep trying, I guess. Anyway, I commend you for your diligence to your lifestyle - I myself still enjoy my cocktails!!! Ha Ha!!

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

Skiffin16

Melissa_Mae said:

How Long Until Taste Comes Back???
I just completed neutron therapy, a type of ratiation. My sense of taste is horrible! But everything smells so good! Everything is bitter/metal tasting or just nothing. Except I can taste some fruit. I'm trying to eat a balanced diet, but I feel like I'm just choking stuff down.

Taste
Welcome Melissa Mae,

Everyone is different...I couldn't taste sweet for a long time other than jarred peaches. I could smell and that led to me having a lor of acid reflux. I think because of smelling food, my body would produce the digestive juices, but since I couldn't eat I'd have all of that excess acid.

I'm out of treatment since June 09, I have regained a lot of taste, it's not like it was before but similar. It's the same as for flavors, just not as intense. I can recognise flavors they just either lose all intensity or are tamed down a lot.

Some things go fairly fast once I start eating and others remain the same throughout, just not as intense.

I had that metallic taste for awhile also, it eventually past. One thing you can try to help with that is using non-metal utensils and items as such.

Good Luck, and hopefully with time, you'll start rgaining some of those flavors back.

John

fsdman

sweetblood22 said:

Melissa Mae
Welcome to our world. I am like 8 or 9 months out of radiation and mine has not really come back yet either. Like you, I seem to taste sweeter things, like fruit, better. I just made a fresh batch of home made apple sauce. I was never a fan of sweet stuff, dispite my screen name, so it's kind of hard. I was always a savory eater. Now everything burns and tastes salty. Or like wall paper paste.

I tried and ate two scallops today. It took me a while to get them down, and they really did not taste like much. I am hearing from others here and at hospital that it can take a year or more. We just have to hang in there and pray for patience. Which has never been a strong point for me.

I could not smell for a while, but I can now. It is pretty frustrating when you can smell food and cannot eat it, and the things you can eat, you cannot taste anyway. I am glad that you can eat though. It is hard to eat a balanced diet. I think a lot people would agree that they feel like they are just choking food down.

I was always a person that lived to eat. Now I have to just eat to live. Frustrating.

sweetblood,
google the
sweetblood,
google the term"acupunture for xerostomia". I did 13 weeks and after 3 weeks things started to get better inregards to saliva but also taste and the burning of my tongue.I am also Sicilian and I miss my foods. I will eat good again.It is much better now but I remember thinking it never would.The changes are gradual.Good luck

sweetblood22

fsdman said:

sweetblood,
google the
sweetblood,
google the term"acupunture for xerostomia". I did 13 weeks and after 3 weeks things started to get better inregards to saliva but also taste and the burning of my tongue.I am also Sicilian and I miss my foods. I will eat good again.It is much better now but I remember thinking it never would.The changes are gradual.Good luck

thanks. does it hurt, the
thanks. does it hurt, the acupuncture? what area of the body did they put the needles in? off to google.

sweetblood22

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.

fsdman

sweetblood22 said:

thanks. does it hurt, the
thanks. does it hurt, the acupuncture? what area of the body did they put the needles in? off to google.

No pain. Make sure the
No pain. Make sure the acupuncturist follows the protocol from th e study.

micktissue

sweetblood22 said:

thanks. does it hurt, the
thanks. does it hurt, the acupuncture? what area of the body did they put the needles in? off to google.

acupuncture
I've been going to acupuncture treatments on and off for about 15 years. Usually there are spots that always hurt when the needles go in (shin, ear, between toes, etc.) but not always. It depends on what the imbalance is. Sometimes the right hurts more than the left.

Traditional Chinese Medicine (TCM), including acupuncture, does not 'treat' based on a single need, but works systemically to balance heat and dryness (too cold or too hot, too wet or too damp) and to open energy channels to bring yin and yang back into balance.

I don't know if it works in a curative sense, but I do know I always feel better, stronger after a treatment.

Best,

Mick

cmacandrew

Greend said:

What to eat
I too went through this problem and I lived on Weight Gain 2000. My two teenage sons were my care givers and would mix up my "milkshake" every day. Sometimes they thought they would be doing me a favor by slipping someting into the drink however every time it burned - epecially bananas; now I laugh about it but not then. I am now having problems again and something I learned is to warm the milk before you mix it, I promise you it makes a big difference. Also I bought one of those old fashioned milk shake machines to blend the materials.

Concerning family - we have all been there. I can't count the times I have sat at a table, eat maybe the mashed potatos (grits go down well but not that many calories), drink chicken noodle soup and smile.

Weight Gain 2000
Where do you purchase weight gain 2000.?

Scambuster

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.

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.

Greend

cmacandrew said:

Weight Gain 2000
Where do you purchase weight gain 2000.?

Weight Gain 2000
I buy it at GNC. They now have Weight gain 2200. I found you often get better deals going to the store vs on-line. Last week they had a "buy one get one 1/2 0ff". Again I recommend using warm milk and at least a blender. Mixing by hand just doesn't work as well - to many lumps and clumps to swallow.

Greend

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.

Oatmeal
I remember those days - the first solids I was abe to eat with ease was bread pudding - I had never had it before and now, 12 years later it is still one of my favorites. First cereal I enjoyed was oatmeal.

Skiffin16

Greend said:

Oatmeal
I remember those days - the first solids I was abe to eat with ease was bread pudding - I had never had it before and now, 12 years later it is still one of my favorites. First cereal I enjoyed was oatmeal.

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.

Skiffin16

Greend said:

Oatmeal
I remember those days - the first solids I was abe to eat with ease was bread pudding - I had never had it before and now, 12 years later it is still one of my favorites. First cereal I enjoyed was oatmeal.

Double Posting
How do you delete a double post?