Taste buds and saliva/squamous cell

pam_t

hi there- my husband just completed 60 radiation treatments & 9 chemo teatments for stage 4 squamous cell at the base of the tongue. We have 2 questions hoping someone can shed some light on:

1) Due to some of the saliva glands being permantly destroyed will food eventually dissolve in his mouth without saliva glands so he can swallow food without the aid of water?
2) Any idea how long it takes for tastebuds to return?

Any response will be appreciated, thank you, Pam

Skiffin16

Time
Hi Pam,

Welcome aboard....

I didn't receive quite as much treatment as your husband. I had 35 radiation treatments concurrent with seven weeks of Carboplatin. Before that I had nine weeks of Cisplatin, Taxotere and 5FU.

I did have Amifostine Injections each day just prior to the radiation also.

I'm about 14 months out of treatment. Taste and salivary function were both slow to return. But I have regained probably 75% of both. Most of it was just a long slow gradual process.

Hoping for the best to you and your husband,
John

delnative

Skiffin16 said:

Time
Hi Pam,

Welcome aboard....

I didn't receive quite as much treatment as your husband. I had 35 radiation treatments concurrent with seven weeks of Carboplatin. Before that I had nine weeks of Cisplatin, Taxotere and 5FU.

I did have Amifostine Injections each day just prior to the radiation also.

I'm about 14 months out of treatment. Taste and salivary function were both slow to return. But I have regained probably 75% of both. Most of it was just a long slow gradual process.

Hoping for the best to you and your husband,
John

60 rads!
Lord have mercy that's a lot of radiation.
I just had 30 rads and two rounds of Cisplatin. My saliva was nonexistent at first, but it started coming back about two months after treatment. Now, almost two years out, it's back almost 100 percent.
If his salivary glands are really fried and the saliva never comes back, I assume he'll be in the same boat most of us were shortly after treatment ended: You need water or some other liquid to help the food slide down. It also helps to eat foods that are naturally moist: a soft-boiled egg in instead of scrambled, for instance. Meats such as steak can be really difficult, while something like chicken -- particularly the dark meat -- goes down easier.
Hope this helps.

--Jim in Delaware

kimmygarland

Taste & Saliva Return
My husband is 8 months out since last treatment (35 rads/chemo) and he says his taste is probably 75% back, saliva not so much. He has to have water at the ready when he eats, but is able to eat most things.

Tricia02

wow 60 rads
That's a lot. I had 30 rads and 4 rounds chemo. I finished treatment Nov 05 so I am approaching 5 years cancer free. In my case I have never regained sense of smell, therefore taste very little food. However I can taste sweet, sour and chilli So I am ok with that. I do still have dryness and always carry a drink with me and chew gum. I am shortly getting flouride trays to help save my teeth, which have suffered from treatment. Each patient is different, each treatment is different and every cancer is different which means we all havae different side effects. Your hubby may be lucky and his saliva and taste may not be affacted. Good luck to you both.

seahaven

taste and dry mouth
hi-- I am 6 months done and my taste is just starting to come back. I still carry water everywhere. I found a sugar free candy that actually gave me some help. Not much but any is good. It is from Halls and it is called Refresh --- found in the cough drop section. give them a try.... best of luck to your husband....

Fire34

seahaven said:

taste and dry mouth
hi-- I am 6 months done and my taste is just starting to come back. I still carry water everywhere. I found a sugar free candy that actually gave me some help. Not much but any is good. It is from Halls and it is called Refresh --- found in the cough drop section. give them a try.... best of luck to your husband....

Taste & Dry Mouth
Pam
I am 8 months out and had 49 rads. My saliva is slowly coming back, it pretty much disappears at night for me. I use MI paste at night per dentist orders. My taste, I would say is only about 40% back right now.
My rads were twice daily, how about your husbands? Best Wishes & Prayers
Dave

pam_t

Fire34 said:

Taste & Dry Mouth
Pam
I am 8 months out and had 49 rads. My saliva is slowly coming back, it pretty much disappears at night for me. I use MI paste at night per dentist orders. My taste, I would say is only about 40% back right now.
My rads were twice daily, how about your husbands? Best Wishes & Prayers
Dave

Taste & Dry Mouth
Hi Dave,

Thanks for the input. How are you doing today....cancer free ....I hope. Rick had 2 rads per day for six weeks...he just completed about a week ago.

How long did it take you to start feeling better after the rads? Have your taste buds come back? Do you work & if so how long were you out?

I know everyone is different just trying to feel our way in hopes of a speedy recovery!! I'm full of questions:-)


Thanks & have a beautiful day!

pam_t

seahaven said:

taste and dry mouth
hi-- I am 6 months done and my taste is just starting to come back. I still carry water everywhere. I found a sugar free candy that actually gave me some help. Not much but any is good. It is from Halls and it is called Refresh --- found in the cough drop section. give them a try.... best of luck to your husband....

taste & dry mouth
GOOD for you.....& cancer free ...I hope?! I imagine imagine water will always be in Rick's hand. Thanks for the tip...I'll try Refresh.

Thanks,
Pam

pam_t

Tricia02 said:

wow 60 rads
That's a lot. I had 30 rads and 4 rounds chemo. I finished treatment Nov 05 so I am approaching 5 years cancer free. In my case I have never regained sense of smell, therefore taste very little food. However I can taste sweet, sour and chilli So I am ok with that. I do still have dryness and always carry a drink with me and chew gum. I am shortly getting flouride trays to help save my teeth, which have suffered from treatment. Each patient is different, each treatment is different and every cancer is different which means we all havae different side effects. Your hubby may be lucky and his saliva and taste may not be affacted. Good luck to you both.

wow 60 rads...
Hi Tricia-
CANCER FREE....GOOD FOR YOU!!! YES, 60 rads & 9 chemos....knocked him to his knees & he has never been ill before. Rick does have the flouride trays...in hopes to also save his teeth; however, we decided to be pro-active & have his back teeth pulled on the advice of our rad.doctor.
Thanks for answering my post & GOOD HEALTH TO YOU & MUCH HAPPINESS!!!!

HAWVET

pam_t said:

taste & dry mouth
GOOD for you.....& cancer free ...I hope?! I imagine imagine water will always be in Rick's hand. Thanks for the tip...I'll try Refresh.

Thanks,
Pam

Welcome Pam_t
Although I seldom post, I can relate my experience. As mentioned, everyone recovers differently. My radiation for nasopharyngeal cancer (NPC-1998) was for just short of nine weeks. I had two heavy doses of chemo (stayed overnight in hospital), but got extremely sick and gave it up.

My taste returned and I think just over 50 percent. I can smell very well, but it is a disadvantage since I cannot eat whatever is cooking. Do not worry since I am just happy to be alive. My saliva has gotten progressively worse and that is because of the treatment and to some extent, aging. My food is mostly with soup or gravy. My breakfast is normally oatmeal w/milk. Lunch is sandwich and cream soup (dip sandwich in soup). My dinner rotates on about seven menu items. The VA gives me ensure, so I supplement with one or two cans daily.

It took me a good month to slowly recover from being sick. Like many, I carry water. My wife made me a pouch that I can loop on my belt to carry a bottle. I kept the one ounce Oasis sprays. At first I emptied it because it tasted terrible. I rinsed it out and filled it with water. For short visits into a grocery store/shopping center, I leave my water in the car and use the Oasis to spray when needed.

I brush twice a day with prescription fluoride toothpaste. I brush more frequently, but use regular toothpaste. I rinse with Act nightly. I have my teeth cleaned three times a year and I told my dentist to keep on repairing. In 12 years, I lost two teeth.

Your husband will recover, but keep his spirits up. That positive attitude will be the way to recovery. Thank the lord for we all can share and brighten our days.

hawk711

taste buds & saliva
Hi Pam
I am 4 months out of treatment, 33 rads and 7 Chemo treatments. At first I couldn't swallow water or eat anything. Now I drink anything I want and just finished a dish of scrambled eggs as I am writing this. After 4 months, I am getting antsy about my saliva glands not getting much better, but my radiologist says it may take a year. So, I have resigned myself to try and eat something daily, (I still have a PEG for tube feeding to get all my calories).
I think this site is great because we all try to be positive, which is how your husband must be. A positive attitude helps as does prayers. So your husband is in for several months of waithing and trying to get the saliva back. I've been told one of the last things to come back is the taste buds due to the rads.
Keep positive and keep asking questions. You won't always get the answer you want but you'll get answers that are correct for your cancer. Mine was base of tongue and left neck and 4 months out I still have some swelling and irritation in my throat. So in 4 months, I went from not drinking water to eating pudding, yougurt, egggs, etc and am hoping for more in the next months or two. Measure your husbands progress by weeks and months, not days, it helps.
All the best
Steve

sweetblood22

hawk711 said:

taste buds & saliva
Hi Pam
I am 4 months out of treatment, 33 rads and 7 Chemo treatments. At first I couldn't swallow water or eat anything. Now I drink anything I want and just finished a dish of scrambled eggs as I am writing this. After 4 months, I am getting antsy about my saliva glands not getting much better, but my radiologist says it may take a year. So, I have resigned myself to try and eat something daily, (I still have a PEG for tube feeding to get all my calories).
I think this site is great because we all try to be positive, which is how your husband must be. A positive attitude helps as does prayers. So your husband is in for several months of waithing and trying to get the saliva back. I've been told one of the last things to come back is the taste buds due to the rads.
Keep positive and keep asking questions. You won't always get the answer you want but you'll get answers that are correct for your cancer. Mine was base of tongue and left neck and 4 months out I still have some swelling and irritation in my throat. So in 4 months, I went from not drinking water to eating pudding, yougurt, egggs, etc and am hoping for more in the next months or two. Measure your husbands progress by weeks and months, not days, it helps.
All the best
Steve

Wow 60 rads. Man that bites.
Hi Pam. It's one of those things that is different for everyone. I am still dealing with some severe side effects from my 30 radiation treatments. But I also had my left salivary gland removed during my neck dissection. Then the other one was fricaséed and toasty from the rads despite the daily shots of amiphostine to try and preserve it. I got some saliva back but still mostly dry. Most of the time I feel like I could spit rattle snakes and cactus needles. I also have a pretty severe stricture very high up in my esophogus due to radiation damage. Despite two stretchings it is still to narrow to eat normally. My tongue is also in constant pain and still feels like it's been scalded. My taste is not normal either. I am like 15 months out of treatment. I still have my peg tube because I struggle to get in enough calories by mouth. I guess I am in the small percentage of those who may not be able to eat normally again. Not telling you my tale to scare but to have others know of the possiblity. I was not prepared or counseled about these challenges and wish that I was. Best of luck.

Peace and blessings,

sweet.

Scambuster

sweetblood22 said:

Wow 60 rads. Man that bites.
Hi Pam. It's one of those things that is different for everyone. I am still dealing with some severe side effects from my 30 radiation treatments. But I also had my left salivary gland removed during my neck dissection. Then the other one was fricaséed and toasty from the rads despite the daily shots of amiphostine to try and preserve it. I got some saliva back but still mostly dry. Most of the time I feel like I could spit rattle snakes and cactus needles. I also have a pretty severe stricture very high up in my esophogus due to radiation damage. Despite two stretchings it is still to narrow to eat normally. My tongue is also in constant pain and still feels like it's been scalded. My taste is not normal either. I am like 15 months out of treatment. I still have my peg tube because I struggle to get in enough calories by mouth. I guess I am in the small percentage of those who may not be able to eat normally again. Not telling you my tale to scare but to have others know of the possiblity. I was not prepared or counseled about these challenges and wish that I was. Best of luck.

Peace and blessings,

sweet.

If IMRT .... 60-70 Rads normal
Guys,

As IMRT is usually administered twice a day, five days a week for seven weeks, then that is 70 rounds. If that was the case then 60 is normal.

Taste recovery is patchy depending on which part of the tongue was hit the most, but most people get a fair amount of their taste back. Saliva - again depends on where the rads hit.

I have tried acupuncture and seemed to improve mine to about 10-15% now which is better than nothing. Still need fluids when eating and work with a bottle of water with me, but it's bearable.

Hope this helps.
Scam

Skiffin16

Scambuster said:

If IMRT .... 60-70 Rads normal
Guys,

As IMRT is usually administered twice a day, five days a week for seven weeks, then that is 70 rounds. If that was the case then 60 is normal.

Taste recovery is patchy depending on which part of the tongue was hit the most, but most people get a fair amount of their taste back. Saliva - again depends on where the rads hit.

I have tried acupuncture and seemed to improve mine to about 10-15% now which is better than nothing. Still need fluids when eating and work with a bottle of water with me, but it's bearable.

Hope this helps.
Scam

IMRT
Scam,

I didn't realize the norm was twice a day for IMRT. I had IMRT also but had the 35 day schedule. They did shoot both sides of my throat though (less on the left (non cancer side)). About 9 - 11 rotations of the machine and about 8 - 12 zaps in each of those locations. I just considered that a day....

Best,
John

RushFan

Skiffin16 said:

IMRT
Scam,

I didn't realize the norm was twice a day for IMRT. I had IMRT also but had the 35 day schedule. They did shoot both sides of my throat though (less on the left (non cancer side)). About 9 - 11 rotations of the machine and about 8 - 12 zaps in each of those locations. I just considered that a day....

Best,
John

Same here
I had IMRT, 33 day schedule. Both sides and straight above my mouth. 11 rotations per day, 30-50 seconds per zap. (I least I think they were that long...one one thousand, two one thousand...). 15 Minutes per session except once a week they did a couple of x-rays for alignment purposes.

Best to all,
Chuck.

sweetblood22

RushFan said:

Same here
I had IMRT, 33 day schedule. Both sides and straight above my mouth. 11 rotations per day, 30-50 seconds per zap. (I least I think they were that long...one one thousand, two one thousand...). 15 Minutes per session except once a week they did a couple of x-rays for alignment purposes.

Best to all,
Chuck.

Imrt also
I had IMRT too. I had 30 rads once a day. No chemo.

Skiffin16

RushFan said:

Same here
I had IMRT, 33 day schedule. Both sides and straight above my mouth. 11 rotations per day, 30-50 seconds per zap. (I least I think they were that long...one one thousand, two one thousand...). 15 Minutes per session except once a week they did a couple of x-rays for alignment purposes.

Best to all,
Chuck.

Exactly the same Rush
Exactly the same.....X-Rays on Monday.

Scambuster

Skiffin16 said:

Exactly the same Rush
Exactly the same.....X-Rays on Monday.

IMRT theory
Well I am a lucky guy to have got a double dose every day I was in ! I recall about 18-20 positions and between 12-25 seconds per zap and it took about 20 minutes each session. The sessions had to be at 'least' 6 hours apart.

The theory was that with the lighter rads from the IMRT machine, had a less deadly effect on C cells so a double hit would do them in. A bit like weeding your garden twice a week instead of once a week, you would get the weeds while they were small and not rip up the garden, where as once a week, the weeds got much bigger and so when you pull them out, there tear up your garden in the process. At least that is my simple analogy. I will have to go back and revisit my notes. Chemo brain causes a lot of shorter term memory lapses ;o(

Scam

Skiffin16

Scambuster said:

IMRT theory
Well I am a lucky guy to have got a double dose every day I was in ! I recall about 18-20 positions and between 12-25 seconds per zap and it took about 20 minutes each session. The sessions had to be at 'least' 6 hours apart.

The theory was that with the lighter rads from the IMRT machine, had a less deadly effect on C cells so a double hit would do them in. A bit like weeding your garden twice a week instead of once a week, you would get the weeds while they were small and not rip up the garden, where as once a week, the weeds got much bigger and so when you pull them out, there tear up your garden in the process. At least that is my simple analogy. I will have to go back and revisit my notes. Chemo brain causes a lot of shorter term memory lapses ;o(

Scam

Leather Neck
Maybe you just have thicker skin....

Actually I labeled this post Leather Neck, but in reality, I am the Leather Neck, along with MarineE5, and a few others, LOL....

Best,
John

seahaven

Pam,
finished sugery, rad
Pam,

finished sugery, rad and chemo about 6 months ago. My taste is now about 50% back. Taste coming back one item at a time. Started with LEMON cake....MMMMMM .... I found a candy that helps with dry mouth. Halls, Refresh (found in cough drop section) --- they don't do much but they give me a little moisture. I am still going through 8 to 10 bottles of water a day. Best of luck to your hubby.