Very disappointed I wasn't told that salivary gland damage was a permanent quality of life change

Skiffin16

Kent Cass said:

Dave
If your last rad was this past December, then it is still too early to regard such as the loss of saliva and taste as being permanent, which is great news for you. I, too, got Cisplatin and FU-5 at the same time I was getting the rads. My taste did start to return about 4-months after the last rad with hotter/spicier foods, like hot dogs with onion and mustard and relish, which gradually got replaced with chef-style salads and roadhouse chili- which still hurts a bit, but does taste good. I hope it all comes back for you as well as it has for John and I, and some others, here. Just takes time to heal.

And, I apologize for being of the "rough crowd," but C is a rough character, too, you know. Not many of us get out unscathed, though to varying degrees. C=Death, Dave, and most of us are just happy as can be to be alive with acceptable side-effects. And, compared to a number of us, I consider myself one of the lucky ones in that regard, and hope you can someday say the same.

kcass

Ditto
Ditto on the Cisplatin...though I had Cisplatin, Taxotere and 5FU for nine weeks (three week cycles), then concurrent Carboplatin weekly for seven weeks with the 35 daily rads.

I'll be willing to bet you...ummm a burger king double cheeseburger, that by this time next year (if not way sooner)...you'll be able to taste better and have enough saliva more than likely to swallow the burger I'll buy for you.

Best,
John

daveinwoodland

Skiffin16 said:

Ditto
Ditto on the Cisplatin...though I had Cisplatin, Taxotere and 5FU for nine weeks (three week cycles), then concurrent Carboplatin weekly for seven weeks with the 35 daily rads.

I'll be willing to bet you...ummm a burger king double cheeseburger, that by this time next year (if not way sooner)...you'll be able to taste better and have enough saliva more than likely to swallow the burger I'll buy for you.

Best,
John

Thank you to everyone for
Thank you to everyone for not only words of encouragement but for giving me hope. I do feel better after reading through everyone's posts.

Take care and God Bless

Scambuster

daveinwoodland said:

Thank you to everyone for
Thank you to everyone for not only words of encouragement but for giving me hope. I do feel better after reading through everyone's posts.

Take care and God Bless

Amifostine
I have the same isses and am not thrilled with the condition. I am pissed at Onco man for not telling me about Amifostine which can salvage /protect the salivary glands from damage during rads.

While it doesn't work for everybody, at least you have some increase changed or better salivary function post Tx. I believe the rads casued the majority of damage.

Some folks ahve had their S Glands temporarily moved sugically (out of the line of fire) and then respotroresd post tx. THis is a consideration.

Unforunatley most of us too scared to death when diagnosed to think about this and too many Doctors just don't bother telling you OR lie about your post Tx condition.

Scam

Skiffin16

Scambuster said:

Amifostine
I have the same isses and am not thrilled with the condition. I am pissed at Onco man for not telling me about Amifostine which can salvage /protect the salivary glands from damage during rads.

While it doesn't work for everybody, at least you have some increase changed or better salivary function post Tx. I believe the rads casued the majority of damage.

Some folks ahve had their S Glands temporarily moved sugically (out of the line of fire) and then respotroresd post tx. THis is a consideration.

Unforunatley most of us too scared to death when diagnosed to think about this and too many Doctors just don't bother telling you OR lie about your post Tx condition.

Scam

Agree
I'm not sure on what the deal is with the rads doctors and Amifostine....I have my suspicions though.

I know from reading about it that most people don't make it all of the way through treatment without some extreme reactions... I can only think of a few on here that made it completely through (not many on here had Amifostine that I can think of, but a few did). I'm not one, I made it 30 of 35 before I started having severe fever swings. Each spot where they injected it around my naval would welt up, dry out, itch and get flakey for several days.

As I have mentioned before, my chemo md actually prescribed it for me. But primarily as an aide in reducing the thick ropey phlegm. From seeing others stories, I think that it definitely helped, I never had that. With an added side benifit of possibly helping regain some salivary function.

I did ask my rads md and he doesn't prescribe it...he doesn't buy into it totally. In his words, "At best it might only give you 10% or so on the saliva"...I'm thinking well damn, 10% is bettter than possibly none.

Of all of my MD's, the rads guy was the hardest to deal with. Any reactions that I would get, he'd always attribute them to the chemo. Any information I needed, I'd have to drag it from him. He just wanted to sit and let me talk and anlayze it.... My ENT and Chemo MD were/are still very pro-active and heavily involved with my post Tx even now at two years post Tx.

For me, I can't help but feel that it did work as planned. I did lose my taste, and I did lose all of my saliva production for several months. Carrying a bottle of water constantly. A bite of food, swig of water, talk a few words, a swig of water...a lot of water bedside, and from all of that water, frequent pee breaks all night long.

But now I'm nearly two years out, and I only tend to dry out during sleep. I'll wake up, take a sip and go back to sleep.

Thoughts and prayers.....
John

luv4lacrosse

Skiffin16 said:

Better
"From a no hair, deaf and ear ringin Tinnitus havin L Hermettes shockin survivor."



So you mean you got better....LOL, sorry glad to see a post from you...lurker.

Best,
John

SURVIVIN
Hi John, hope all is well. All is good here, even with my little quirky side effects.

Hope everyone here has a great day.

Best!!

Mike

D Lewis

Dave inWoodland, what you need is a smart-mouthed kid...
Wah Wah Wah. Eight weeks of max dose rads and cisplatin for stage 4, metastasized to both sides of my neck... what is it with all you guys who only got burned for 33 sessions? I'm a year out from treatment, and started whining at the kid because I put a handful of pretzels in my mouth, crunched them up, and then puffed a mouthful of dust back out at her to show her how dry my mouth was. (...yeah, I tried to spit at my kid...) Her answer, without even looking up... "Shut up Mom. Your feeding tube is gone now. You are putting food in through your mouth and swallowing it. Quit whining!"

Dave, are you in Woodland, CA, or Woodland, elsewhere?

Deb(who is optimistic she will get old, but recognizes that she will never be fat...)

Greend

MarineE5 said:

Same Questions as the others
Dave,

I have pretty much the same questions as listed above. Main one is how long you are out of treatment(s).

I remember one survivor posting either on here or another site that I visit, that he finally started to have some saliva after 6 years out from treatment. I am in the same boat as you, my mouth is like the desert when I eat and I am 6 1/2 years out. So, I had hope for some saliva after reading that survivor's comment several years back, but it isn't meant to be for me.

Another survivor I know suggested to me to try accupuncture because he got his saliva back after 2 treatments of accupuncture. I checked with my insurance and they said they would pay for it and my cost was a co-pay. So, I went and tried it. The Doctor told me that if I didn't have saliva after 6 treatments, we were wasting money. I did the 6 treatments and had no saliva, but did one more treatment to make sure. Didn't work for me, but might work for others.

My Best to You and Everyone Here.

MarineE5 Acupuncture
I tried it and it did nothing.

Denny

Greend

sweetblood22 said:

I can understand your frustration.
I wasn't told that the side effects could be so severe. While I am glad that I'm on this side of the grass now, for a solid year, at least, after I had radiation, I wasn't so sure I was happy I chose to have radiation.

They had to take my left salivary gland out when they did my neck dissection. That is basically where my tumor was, so I was already down one going in and then rads fried the other. I got a pretty good dose because my primary was unknown. My mouth was destroyed. I had sores on top of sores and my mouth bled constantly. I am just over two years out, and my tongue still feels scalded. Talking is an effort. I have very little saliva. My mouth was so bad that I would have died without my peg tube and I still was so sick I lost 40 lbs and was down to 87 lbs. I didn't drink for about 5 months. I didn't eat food for almost 9 months. In addition the radiation left me with a severe stricture. I have had two stretchings and eating is still difficult. It was down to only 2 mm.

Eating and cooking was a joy and passion of mine. I was very bitter for a long time that it was taken from me. I struggled through another round of deep clinical depression because of it. I fought tooth and nail to try and eat again and to gain some weight back. I had my peg tube for 18 months. I was only about 94 or 97 lbs when I got it out this past September. I'm around 110 or so. (I was always a good weight of 120-125 before all this mess)

I cannot say eating is a "pleasure" like it used to be, but I am finally happy again. It's like a job for me. I have had to learn a different approach to food. I have changed what I eat. Tons of fruits and vegetables, cause I can actually swallow that. Meats are like trying to swallow sawdust. Especially chicken. No amount of milk or water or whatever helps me get most meats down. I can manage tiny little rack of lamb chops. Two of those takes me and hour and a half, but I can get it down without it being a major choking hazard. I have learned how to prepare food differently. My mini chopper processor has done wonders, as well as an emulsifier (high speed blender). I still drink about half my calories. Smoothies of whole fruit and veggies are a great way to get nutrition in. So eating and food prep take up a lot of my day. Three hours a day just for eating. I am just glad I can and I'm rid of that stupid tube.

I have even been trying to develop recipes and write a HNC cookbook.

The only thing I can say, is that I hope it gets better for you. I hope you can find a way to bring some joy back to food and eating in your life. You may not be able to enjoy the things you used to, but maybe there will be new things and new ways for you to enjoy food.

Even if they did develop something to help fried salivary gland, I would still be down one. It would be so nice to have saliva again...

Blessings,

Sweet

Sweetblood
While I am glad that I'm on this side of the grass now, for a solid year, at least, after I had radiation, I wasn't so sure I was happy I chose to have radiation.



I remember your posts at that time. As we say down south "ya done good gurl"

Denny

sweetblood22

Greend said:

MarineE5 Acupuncture
I tried it and it did nothing.

Denny

Denny
Thank you, sir.

daveinwoodland

D Lewis said:

Dave inWoodland, what you need is a smart-mouthed kid...
Wah Wah Wah. Eight weeks of max dose rads and cisplatin for stage 4, metastasized to both sides of my neck... what is it with all you guys who only got burned for 33 sessions? I'm a year out from treatment, and started whining at the kid because I put a handful of pretzels in my mouth, crunched them up, and then puffed a mouthful of dust back out at her to show her how dry my mouth was. (...yeah, I tried to spit at my kid...) Her answer, without even looking up... "Shut up Mom. Your feeding tube is gone now. You are putting food in through your mouth and swallowing it. Quit whining!"

Dave, are you in Woodland, CA, or Woodland, elsewhere?

Deb(who is optimistic she will get old, but recognizes that she will never be fat...)

Hi,
I am in Woodland CA,
Hi,

I am in Woodland CA, 95776

bpell0402

Scambuster said:

Amifostine
I have the same isses and am not thrilled with the condition. I am pissed at Onco man for not telling me about Amifostine which can salvage /protect the salivary glands from damage during rads.

While it doesn't work for everybody, at least you have some increase changed or better salivary function post Tx. I believe the rads casued the majority of damage.

Some folks ahve had their S Glands temporarily moved sugically (out of the line of fire) and then respotroresd post tx. THis is a consideration.

Unforunatley most of us too scared to death when diagnosed to think about this and too many Doctors just don't bother telling you OR lie about your post Tx condition.

Scam

amifostine
Brought this med up to rad/oncologist... said it was an " ANCIENT" medication with unproven benefits and that i needed to stop googling! its a medication she does not use. anyway, when she told my mom the possible side effects she ran for the hills ..

however i very suprised that it was not even considered as i feel i have read good feedback about it and think its " worth a shot" .. i also read medically studies!

every doctor is different and has different protocols. Ever doctor we've spoken to has asked be what glutamine is haha

D Lewis

daveinwoodland said:

Hi,
I am in Woodland CA,
Hi,

I am in Woodland CA, 95776

Hi back at ya!
'waving hello from near Columbia State Park in the Sierra foothills'

Deb

one_day

Skiffin16 said:

Agree
I'm not sure on what the deal is with the rads doctors and Amifostine....I have my suspicions though.

I know from reading about it that most people don't make it all of the way through treatment without some extreme reactions... I can only think of a few on here that made it completely through (not many on here had Amifostine that I can think of, but a few did). I'm not one, I made it 30 of 35 before I started having severe fever swings. Each spot where they injected it around my naval would welt up, dry out, itch and get flakey for several days.

As I have mentioned before, my chemo md actually prescribed it for me. But primarily as an aide in reducing the thick ropey phlegm. From seeing others stories, I think that it definitely helped, I never had that. With an added side benifit of possibly helping regain some salivary function.

I did ask my rads md and he doesn't prescribe it...he doesn't buy into it totally. In his words, "At best it might only give you 10% or so on the saliva"...I'm thinking well damn, 10% is bettter than possibly none.

Of all of my MD's, the rads guy was the hardest to deal with. Any reactions that I would get, he'd always attribute them to the chemo. Any information I needed, I'd have to drag it from him. He just wanted to sit and let me talk and anlayze it.... My ENT and Chemo MD were/are still very pro-active and heavily involved with my post Tx even now at two years post Tx.

For me, I can't help but feel that it did work as planned. I did lose my taste, and I did lose all of my saliva production for several months. Carrying a bottle of water constantly. A bite of food, swig of water, talk a few words, a swig of water...a lot of water bedside, and from all of that water, frequent pee breaks all night long.

But now I'm nearly two years out, and I only tend to dry out during sleep. I'll wake up, take a sip and go back to sleep.

Thoughts and prayers.....
John

Amifostine
Hi, I am new on the site. Very cool to be here and feel the strength and courage of all present.
I was diagnosed 11/17/2010, with SCC 4a, left tonsil and lymph nodes. Had Cisplatin and 33 rads. Chemo was vicious (2 hospital stays, acute vomiting & dehydration, etc.) I've been finished with treatment since 2/15/2011. Very little saliva, pretty severely distorted taste. Just this week taking all food by mouth (mostly smoothies) and feeling very fortunate indeed, esp. considering how long some of y'all had to endure. Still have the PEG, hope to get it out later this month.
Regarding amifostine, I had it prescribed by my Radiation Oncologist and was able to tolerate it through about treatment #20, when overall nausea/vomiting concerns led to cutting that out. I encourage newly diagnosed patients to ask/push for it, as I was relatively free of mouth sores & mucositis compared to many and this may have been why.
Thanks to all who've posted, particularly regarding saliva, taste issues. This is very hard for me to accept/deal with. Anyone miss kissing their sweetheart properly? I know it's been only 3 1/2 months so I'll try and keep positive.

Peace,

Locke

KareGiver

D Lewis said:

Hi back at ya!
'waving hello from near Columbia State Park in the Sierra foothills'

Deb

So needed
To hear ALL of these coments!

Skiffin16

one_day said:

Amifostine
Hi, I am new on the site. Very cool to be here and feel the strength and courage of all present.
I was diagnosed 11/17/2010, with SCC 4a, left tonsil and lymph nodes. Had Cisplatin and 33 rads. Chemo was vicious (2 hospital stays, acute vomiting & dehydration, etc.) I've been finished with treatment since 2/15/2011. Very little saliva, pretty severely distorted taste. Just this week taking all food by mouth (mostly smoothies) and feeling very fortunate indeed, esp. considering how long some of y'all had to endure. Still have the PEG, hope to get it out later this month.
Regarding amifostine, I had it prescribed by my Radiation Oncologist and was able to tolerate it through about treatment #20, when overall nausea/vomiting concerns led to cutting that out. I encourage newly diagnosed patients to ask/push for it, as I was relatively free of mouth sores & mucositis compared to many and this may have been why.
Thanks to all who've posted, particularly regarding saliva, taste issues. This is very hard for me to accept/deal with. Anyone miss kissing their sweetheart properly? I know it's been only 3 1/2 months so I'll try and keep positive.

Peace,

Locke

Wet One....
Welcome To The Forum Locke,

I'm sure in time you can give her a big wet one....

My saliva and taste were pretty much not there for several months. A bottle of water was with me always.... If you are like me I couldn't even spit, all I got was a sticky glob of white stuff near foam that I couldn't even spit out of my mouth.

Eventually I could actually start feeling a little saliva. Then I could actually form a little clear wet saliva if I tried really hard.

Now it's nearly the same as always other than I dry out a little when I sleep...actually quite a bit. But hey, no spit while I sleep is much better than when awake right....

So hang in there, I'm sure given several months, you'll be back to near normal...or at least your new normal.

BTW, you reminded me of something, I never had any mouth sores or thrush nothing like that either...maybe there is something to that Ancient Amifostine stuff....

Best,
John

Skiffin16

bpell0402 said:

amifostine
Brought this med up to rad/oncologist... said it was an " ANCIENT" medication with unproven benefits and that i needed to stop googling! its a medication she does not use. anyway, when she told my mom the possible side effects she ran for the hills ..

however i very suprised that it was not even considered as i feel i have read good feedback about it and think its " worth a shot" .. i also read medically studies!

every doctor is different and has different protocols. Ever doctor we've spoken to has asked be what glutamine is haha

Ancient ~ LOL
Well if two years is ancient..., at 57 I must be a mummy....

Ask your chemo MD if it has any value concerning reducing thick mucous.

Either way, glad I had the opportunity to use it, and the fortune of having nearly 90% taste and saliva....never having the choking thick mucous of some here.

As I mentioned above, it seems the rads MD's don't have value for it...

I did think about this for awhile, since your MD's comments, LOL....

I am hoping that they are up on current procedures, studies whatever... I can only speak for myself. I do remember when researching Amifostine myself. Back several years ago, it was administered via drips and other methods than how I was given.

I'm not sure if that's from more study or not. I know that it does have a tendancy for bad reactions, most are later in treatment. Myself included, I eventually had to stop after about 30 of 35 treatments due to high fevers.

As for me, I'm not sure how the others on here were given Amifostine, and I don't think I've seen it by "Googling" it either.

Mine was given each day just before rads. I believe it has to be given somewhere within the range of 30 minutes or less before rads to be most effective.

Mine was mixed from a dry powder with Saline, or some other solution...depending on the person mixing the brews and injecting that day.

I would be given the injection around my belly button each time, rotating spots. I'd get a welt the size of a quarter, it would itch, turn red and then dry out for several days. It was easy to see where each injection was for several days.

Anyways, I'm definitely not a professional MD, just a person that went thru this and for me, I believe that it helped me.

I think the bottom line with your MD, is what she said, "she doesn't use it"....and there's nothing wrong with that. It's what she has faith in and and the results that she has encountered with her methods.

Best,
JG

Daddisgrl

daveinwoodland said:

Follow up answers from everyone
To answer everyone's questions.

1. I am not trying to "scare" anyone off from treatment but I would have liked the opportunity to look at alternatives if I had been told about possible permanent side effects.

2. No, I did not sign anything that said "possibly permanent" we all sign forms during this time that have plenty of "I'm aware there may be side effects", but nothing that spelled out "permanent" changes in a basic function of life. Believe me I looked.

3. Yes, I said I "looked" into malpractice but being an educated person with connections that range all the way to an Ex Director Of The California Medical Board I knew that I didn't have a case but was ticked off enough to look into it which I did.

4. I had both radiation and Cisplatin at the same time that ended in December 2010. The comments made from others here have given me more hope that I still may see some change both in my salivary gland function and my sense of taste.

5. Am I Bitter at all of this? You bet I am and it doesn't do any good to myself mentally to deny it.

I did for quite awhile and realized it was much more healthy for me to admit my anger and disappointment in the outcome of treatment. I am not ungrateful for what the health care professionals did but I am bitter that I was never informed of possible alternatives before deciding on treatment. My fault yes, but at the time you are not exactly thinking too straight.

6. Have I tried alternative treatments? Yes I had read about acupuncture so decided even though my insurance didn't cover it I tried 6 treatments with a very experienced and highly recommended person. Did it help? NO not for my dry mouth but it did help some other physical issues so that was a plus.

Thank you to everyone for the thoughts and kind words it does help when you know you're not totally alone at what you're going through and I hope the best for everyone else as well.

You're a year behind my hub.
You're a year behind my hub. I can tell you that you honestly will not know until December; maybe a bit longer. My hub was originally given Evoxac 3 times a day until we lost our insurance; then they gave him generic Salagen which he likes better. Look into them

He uses a small dab of vaseline at night on the roof of his mouth where his tongue sticks. I don't know why we weren't told about this sooner; but it does work on those days his saliva is not good & helps him sleep better.

Biotene tooth paste- Walgreens has it on sale buy 1 get 1 1/2 off. I stock up. Target also puts it on sale. I have bought all of the biotene products- mouth wash; there is a spray. It does help

If you have fluoride trays the mint may be drying you out more; ask your pharmacy to order the fruit one. Makes a big difference

Water- he always had water with him & 18 months later; I've noticed that he's not drinking as much as he did; so something is working.

If your mouth starts feeling weird; it's probably thrush coming back. Hub had this for the 1st year & has not had it in 6 months.

It's going to take a good year to recover. Even now he's still not 100%; but he's not as bad as this time last year. Best advice I can give is to not plan anything major- like a vacation because it could set you back. He went fishing in Mexico 10 months out; when he got back he had MRSA; thrush. The traveling really did a number on his body.

Skiffin16

Daddisgrl said:

You're a year behind my hub.
You're a year behind my hub. I can tell you that you honestly will not know until December; maybe a bit longer. My hub was originally given Evoxac 3 times a day until we lost our insurance; then they gave him generic Salagen which he likes better. Look into them

He uses a small dab of vaseline at night on the roof of his mouth where his tongue sticks. I don't know why we weren't told about this sooner; but it does work on those days his saliva is not good & helps him sleep better.

Biotene tooth paste- Walgreens has it on sale buy 1 get 1 1/2 off. I stock up. Target also puts it on sale. I have bought all of the biotene products- mouth wash; there is a spray. It does help

If you have fluoride trays the mint may be drying you out more; ask your pharmacy to order the fruit one. Makes a big difference

Water- he always had water with him & 18 months later; I've noticed that he's not drinking as much as he did; so something is working.

If your mouth starts feeling weird; it's probably thrush coming back. Hub had this for the 1st year & has not had it in 6 months.

It's going to take a good year to recover. Even now he's still not 100%; but he's not as bad as this time last year. Best advice I can give is to not plan anything major- like a vacation because it could set you back. He went fishing in Mexico 10 months out; when he got back he had MRSA; thrush. The traveling really did a number on his body.

Fishing.....
Awwww come on girl, fishing never did a body harm....LOL...teasing, all very good advice.

HONDO on here swears by Stoppers4 also for dry mouth. You have to order it, and mine was manageable enough I never got it...but others have and they also agree about it's effectiveness.

Best,
John

sweetblood22

Skiffin16 said:

Wet One....
Welcome To The Forum Locke,

I'm sure in time you can give her a big wet one....

My saliva and taste were pretty much not there for several months. A bottle of water was with me always.... If you are like me I couldn't even spit, all I got was a sticky glob of white stuff near foam that I couldn't even spit out of my mouth.

Eventually I could actually start feeling a little saliva. Then I could actually form a little clear wet saliva if I tried really hard.

Now it's nearly the same as always other than I dry out a little when I sleep...actually quite a bit. But hey, no spit while I sleep is much better than when awake right....

So hang in there, I'm sure given several months, you'll be back to near normal...or at least your new normal.

BTW, you reminded me of something, I never had any mouth sores or thrush nothing like that either...maybe there is something to that Ancient Amifostine stuff....

Best,
John

Amifostine
I had it too. I think I tolerated it up to about the 27 out of 30 rads. I had crazy mucous, but not the thick ropey kind that I hear people talk about. I did have severe mouth sores tho. No thrush.

minty01

hi
Hi you havnt said what level of radiation you had , im going through the same have been very depressed due to taste buds gone , they have told me taste will come back in time as i am on a low dose treatment , i was ready to give up the treatment and everything i am lucky enough not to have full blown cancer for that i am very grateful , but i do know exactly where you are coming from on how you feel , even now i have my doubts i will get my taste back .

Regards Ian