Salivary Gland Transfer

considering the outcome is the same...that the production didn't return fully.  If I'd been offered this, I would have probably turned down extra surgery (two surgeries) to get pretty much the same results.  For the majority of people saliva comes back slowly, but it does come back.

Matt, you totally crack me up....I wonder where they move them to??  A jar?  Your armpits... where they might not be noticed so much when they kick in if you smell really good food when you can't taste or swallow and you think you're starving to death? 

p

fishmanpa said:

It's going to be weird...

Not to taste. I tried eating a few bites here and there holding my nose (yeah, I know I'm weird ~lol~) and it's a strange feeling. I knew what I was eating but couldn't really taste it. It's going to be very weird when they go completely dead for so long. I can't wrap my mind around being able to smell but not taste. I'll know soon enough.

In the mean time tough, I'm enjoying my favorite foods. Marcia and I are going to our favorite Chinese restaurant tomorrow. Another one crossed off the bucket list. I'm anxious to get started. I'm really starting to feel sick now. Tired and some discomfort in the back of my mouth, throat and ear. Feels like there's a piece of food back there I can't get rid of. Less than two weeks till surgery though. As much as I'm not looking forward to another surgery, the kid in me thinks it's pretty cool it'll be done by a robot! 

"T"

 

that once the reality of what we have sinks in, we "feel" more, strangely enough.  It took about a week for me, and suddenly my neck was hurting, my ear would do weird things....The same thing happened when I was about to get my PET scan after treatment.  For the week before I had all kinds of strange little pings and pangs in my chest, in my throat....my cheek....I was scared to death they were going to tell me it was back.  As soon as I got the all clear, all those went away.

Glad to hear you're eating everything you want....I was going to the Mexican restaurant twice a week and ordering 2 dinners....one for there, and one to take home...LOL.  What's really strange about losing your taste is that it seems to happen over night....nothing gradual about it. 

p

fishmanpa said:

The Thing With Two Heads

It makes sense that psychologically we react to the diagnosis. Before I went to the ENT, I had already psyched myself into knowing it was cancer. But still, hearing those words from the doctor made my heart skip a beat. 

I know the tumor is not much larger than it was a few months ago but it "feels" like it's growing and more swollen. I'm waiting for Rosie Greer to come popping out of my neck any day now! I am crashing sooner than I was a couple of months ago. I come home from work and I barely make it a few hours and I'm ready for bed. Certainly, the mental stress has something to do with it. 

I'm taking your suggestion concerning milk. I've never been a big milk drinker. Only when I was body building I used non fat for my protein shakes. Marcia drinks whole milk and we'll be using that to make shakes with. 

"T"

when I started treatment....so they really wanted me to suck up as many calories as I could.  So for my milkshakes and smoothies in the beginning, I used half and half just like it was milk.  There's something like 40 calories in a tablespoon (maybe two tablespoons)...for a whole glass of it, you can really bulk up the calories.  It was too thick for later on in treatment...but for the first part it was great.

p 

sonyk728 said:

My saliva glands were "re-routed"

I'm not sure about putting saliva glands in a safe place, but when I had a tumor in my mouth and had a major surgery- they removed it and had to re-route my saliva glands. I'm on salagen 3x a day to help with saliva production. 

Quite a few of us on the board have had shots (one per Rad treatment) to preserve the salivary glands.  Now, what I'm going to relate here might be totally psychosomatic but it's real to me.  I was getting my shots until I noticed that I was getting a big red spot at the injection site.  So this Tuesday and Wednesday we skipped the shot.  Saliva production on Thursday down by at least 50%.  Friday I went back on shots and last night and this morning production is greatly improved.

So, as the disclaimer said, I may be nuts but I am sure (in my mind) there is a very definite benefit to the saliva shots.

Joe Cortney

Dallas, TX

fishmanpa said:

It's just because....

Thanks for the input. I read further into salivary gland transfer and it typically adds 45 minutes to surgery. I'm getting a selective neck dissection to remove the tumor and robotic surgey for biopsies so I'll be in the OR long enough.

I'm a musician/singer and dry mouth doesn't bode well for performance if you know what I mean. I'll shoot off an email about the shots and the drugs to the doc today... 
Being able to perform again is essential to my well being. I gave up public performance in 1994 after doing it full time for 15 years. I came out of retirement in 2009 and it's been something that has brought me more joy than it ever did before. 

In case you might want to check it out... I found a vid someone took of my singing partner and I 'Sweet T' at an open mike in 2010.... a Miranda Lambert tune... 
http://www.youtube.com/watch?v=mqVy9s05eGI&feature=share 

"Jack" is threatening to take something away from me I cherish and I'm not very happy about it! ;( 

"T"

cuz I have no sound on my home puter.....but I'm going to watch it.

There are several musicians on here who have gone back to their music full force after treatment.  Dry mouth will be a problem for a while, but by degrees you will get most if not all of your saliva back.  John, me....and it looks like Joe, too got Amifostine.  I didn't suffer from mucous either....Amifostine also protects kidneys from chemo, and saliva glands from rads.  I chose my Oncologist not only because he was good, but because he was the only one in town who offered Amifostine.  Some Dr.'s feel that Amifostine is too hard on patients already going thru tough treatment.  It does have it's own "sick" on a daily basis.....I skipped the last one and was glad to do so!

p

phrannie51 said:

I can't watch the vid till I get to work

cuz I have no sound on my home puter.....but I'm going to watch it.

There are several musicians on here who have gone back to their music full force after treatment.  Dry mouth will be a problem for a while, but by degrees you will get most if not all of your saliva back.  John, me....and it looks like Joe, too got Amifostine.  I didn't suffer from mucous either....Amifostine also protects kidneys from chemo, and saliva glands from rads.  I chose my Oncologist not only because he was good, but because he was the only one in town who offered Amifostine.  Some Dr.'s feel that Amifostine is too hard on patients already going thru tough treatment.  It does have it's own "sick" on a daily basis.....I skipped the last one and was glad to do so!

p

It's "own sick"....

Ain't that the truth..., not many I know have made it through all 35 sessions, myself included.

I dropped them off at round 33, it was messing with my internal thermometer, LOL. Had fevers upto 102.7 twice, one of those my temp dropped first sending me into extreme chills. I thought I was going to have a heart attack... Really bad shivers, chest aches, arms aching..scary stuff.

Doc's figured it might be the injections, since I only had it once before the week-end, then again the Monday after.

Also had the injection site welts, red, itchy and swollen... They had to rotate the injections arounf my belly button so they would hit a different spot each time...

Oh, did I mention they were in the stomach each day just before rads...

JG

peggylulu said:

Amifostine

Wow JG after reading your post I think I'm glad my dr. didn't offer it to me ! 

into my IV line, so I didn't have injection site.  However, once it hits your body, there is a "rush" that hits your chest and heats up to the top of your head....I really hated it.  I did 34 of 35 injections....I loved calling the last day of rads and telling them I wouldn't be in. 

p

peggylulu said:

Amifostine

Wow JG after reading your post I think I'm glad my dr. didn't offer it to me ! 

Even though I had some reaction, and the shots themself kind of sucked..., I'd do them again.

I do believe they helped with salvary reproduction, but the main thing is the lack of having the thick choking phelgm and mucouc a lot speak of... That sounds much worse than the stuff I went through.

But you never know, LOL...

JG

Skiffin16 said:

I'd Do It Again Though...

Even though I had some reaction, and the shots themself kind of sucked..., I'd do them again.

I do believe they helped with salvary reproduction, but the main thing is the lack of having the thick choking phelgm and mucouc a lot speak of... That sounds much worse than the stuff I went through.

But you never know, LOL...

JG

came because it was given intraveniously instead in the muscle of the stomach.  My sister was with me one day, and she said my face turned beet red.....I was like "no doubt, I can feel it".  I sure do it over again, too...tho.  I didn't suffer the thick mucous either....and from what everybody says, there's plenty of misery with that stuff....glad I missed it.

p