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Salivary Gland Transfer

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

I saw a post from a few years ago on this subject and read about it in another forum. They take one or more of the salivary glands form the area that's due to be irradiated and move them to a safe area during treatment. The result was very positive and while saliva production didn't return to normal pre radiation levels, it significantly improved saliva production after treatment. 

I have an email into my surgeon about it. Anyone have it done or know anyone who did?

"T"

CivilMatt's picture
CivilMatt
Posts: 2977
Joined: May 2012

T,

 

Maybe they could hide your taste buds too; they don’t take up much space and get along with the saliva glands swimmingly.

 

Matt

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

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"

 

phrannie51's picture
phrannie51
Posts: 3741
Joined: Mar 2012

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's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

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"

phrannie51's picture
phrannie51
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Joined: Mar 2012

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.

phrannie51's picture
phrannie51
Posts: 3741
Joined: Mar 2012

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

sonyk728's picture
sonyk728
Posts: 104
Joined: Jun 2011

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. 

jcortney's picture
jcortney
Posts: 423
Joined: Sep 2012

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

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Actually, unless I am totally wrong..susel....

 

Most everyone on here, (eventually) gets most of their taste and saliva back, if not nearly all of it. Now it does take awhile, for me, I had a large portion of both back within six months...certainly enough to live comfotably if that's as best it got.

But, after two years I had completely gotten back 100% taste and around 95% or so of my saliva.

With STGIII SCC Tonsils and a lymphnode, I was zapped on both sides, 70 - 60Gr.

Anyways, just thoughts, I know everyone wants to have as much guarantee as possible for minimal residual damage, and long term damage.

As for the injections mentioned above, for me and P, and others...we had Amifostine, more so for minimalizing the thick mucous and phlegm, but also to help regain some salivary function...

It definitely helped with the phlegm, never had it... I got back nearly all saliva, not sure if that was related to the Amifostine as others without have gotten back most saliva also.

JG

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

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"

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

True, I forgot that time for you messes with your passion and I'm sure green backs as well...

JG

phrannie51's picture
phrannie51
Posts: 3741
Joined: Mar 2012

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! Laughing

p

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

My Doctor didn't offer it to me and the first I've heard about it (Amifostine) is on hereFrown. He also for some reason unknown by me didn't use the Pink Magic either . I did ask about getting some of that .

Peggy

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

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's picture
peggylulu
Posts: 367
Joined: Dec 2012

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

phrannie51's picture
phrannie51
Posts: 3741
Joined: Mar 2012

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.  Laughing

p

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

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

phrannie51's picture
phrannie51
Posts: 3741
Joined: Mar 2012

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

jcortney's picture
jcortney
Posts: 423
Joined: Sep 2012

All through these treatments I've been dreading the mucous and the phlegm.  My doc told me I would probably get by without the suffering if I took the shots.  Five treatments left and I'm keeping my fingers crossed.

It hasn't been without complication, low grade fever, itchy and generally feeling like crap after getting the shot.  Small price to pay if I dodged the mucous and my saliva glands survive.

 

Joe Cortney

Dallas, TX

tommyodavey's picture
tommyodavey
Posts: 358
Joined: Nov 2011

Hi fishmanpa,

 

I may be one of those you were referring to about moving the salivary gland.  My cancer was Mucoepidermoid Carcinomo.  Had a tumor on the base of my tongue and my lymph node was swollen on my right neck.  Once I had the surgery to remove the tumor, I was scheduled for a right neck dissection after my wound healed enough.  Lucky for me I had the TORS and a great surgeon.

 

What my surgeon did was remove my right Parotid gland because rads would kill it anyway.  He then moved my left gland over to more of the center of my mouth and informed the radiation team to avoid that spot.  As one would expect, my saliva output was 50% for several months but then it started to get better and better.  Today I feel almost normal.  I wake up several times a night with a dry mouth because now I sleep with my mouth open for some reason.  I never did before.  I like the Stoppers 4 and keep it next to my bed.

 

One good thing is you'll never get caught drooling while napping!  The main point is, my teeth will do a lot better with my own saliva so my chances of losing teeth got a lot better.

 

Was this what you were looking for?  

 

Tommy

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hey Tommy,

Yep... you and a couple others referred to it. Thanks for the reply. I've done some reading and I have the question posed to my surgeon along with the various drugs that may support the salivary glands. The 1st radiology oncologist I met with told me that he was going to "sacrifice" the glands on the left side of my neck but would try to save some on the right. He didn't mention any drugs or alternatives.

I'm SO glad I sought a 2nd opinion! The team at Johns Hopkins is amazing and is all about minimal morbidity and quality of life. I expect to hear back from my surgeon Monday some time. 

"T"

 

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

T, I don't mean to be a party pooper, and hopefully you can prove me wrong...

But I'd think if it were a guarantee that everyone having H&N Rads would for sure permanantly lose their saliva, they would move the glands for everyone if that would gurantee saliva reproduction, or at a faster rate of return.

Has any of the MD's gave you a guarantee you would regain saliva faster, or more of it than not having the relocation?

Again, I'm not trying to bring you down, and I'm certainly no medical professional, but I'd at least ask the question to the MD's suggesting it.

Like Phrannie, myself and others..., most everyone here regains their taste and saliva eventially, or some degree of it.

I know also that your voice is your lively hood, but killing the cancer is the main priority.

Anyways, just rambling....

I would just hate to see you go through something extra, that might not have the results in the time frame that you are wanting.

Best ~ John

 

 

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi John,

By no means is that being a party pooper. There are no guarantees in this battle. I have the questions posed to the surgeon. I just want to know all my options and be able to make an informed decision. I have full trust in the team of physicians and I'll go by what they say. At the very least, the Amistafine (sp) sounds like a risk worth taking to avoid becoming an expert lugie hocker ;)~

"T"

 

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Well informed is always good...

Also, like you mentioned, trust in your MD's is huge... After all, they are the experts, mine were/are awesome. I couldn't have had a better team than what I have. I still see them for my semi-annual exams now, as well as the nurses at the chemo center...they are totally awesome.

As much as I talk of the Amifostine, it wasn't that bad of an experience considering all of the other crap you deal with. But those last few injections pretty much sucked.

But, it was totally worth not having that thick choking phlegm many speak of...if that indeed was the reason I didn't get it, and I presume it was.

JG

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

...that Johns Hopkins is the 3rd highest rated cancer center in the country. Winchester came in around 94th and wasn't even listed as a comprehensive cancer center scoring 24.7 out of 100 with a far below average in survival rating. I'm not saying that there aren't hospitals that have excellent programs but my experience at Winchester left me a bit shaken. I've yet to hear back from from anyone after last week! Not even a "what did you decide?" call. 

"T"

 

phrannie51's picture
phrannie51
Posts: 3741
Joined: Mar 2012

and thoroughly enjoyed it....thanks for sharing!!

p

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

My ENT in my very small town...of Lakeland Florida...actually has his Medical Degree from Harvard, and did his 2 - 4 year internship at John-Hopkins...

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

This is the reply from my surgeon concerning salivary gland transfer and/or drug therapy.


"We don't perform gland transfers here. With surgery and IMRT radiation (Dr. Quon) you should expect to have excellent salivary function afterwards as much of his glands will be remain intact and functional. Most patients return to full or near full salivary flow 6-12mo after completion of treatment."


That's what I like to hear!

"T"
Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Exactly what I (and others) have been saying to many here..., just never saw in in writing, can only give my experience and observations of others over the nearly last four years.

Very cool T...

JG

 

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hey John,

The first Rad Oncologist I met with said he was going to "sacrifice" the salivary glands on the left side and "try" to preserve the ones on the right. He didn't mention meds or any way to save them so yeah... I was freaking a bit for sure! Then, when the team looked at the recommendation for the rad therapy, they, in so many words, said that it would be putting me in a situation where irreversable damage could be done. 

Just knowing they have my best interests in mind helps immensely. So here's to a fish fry by next Spring and bring on the hot sauce!

"T"

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Anytime you an Marci are in the area....

I've met several on here over the last four years...

JG

tommyodavey's picture
tommyodavey
Posts: 358
Joined: Nov 2011

I didn't mention that I too lost my saliva and taste just like everyone else who has rads to the mouth.  But then the question was concerning the moving of the major salivary gland.

 

You got the best answer anyone could hope for.  That must have taken a load off your mind.

 

Tom

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