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Taste Buds - when will they return!?

Ramseur7
Posts: 5
Joined: Mar 2004

My husband just completed 6 weeks of radiation (42 treatments) for squamous cell carcinoma, base of tongue. He did well during treatment as he only lost 8 lbs., did not have a feeding tube and never took any narcotic pain medication. He is taking non-narcotic pain meds. His biggest problem is severe mucus, throat pain and no taste. He has an appetite and is so hungry. He is drinking boost plus shakes and broth. His throat hurts too bad to eat anything other than that for now, but if he could just TASTE he feels that his emotional state would be much better. I know it differs for everyone, but on average, can anyone share how long it took for them? My husband is getting a little depressed, but tries to keep his focus on God to help him through this. Any advice is greatly appeciated.

patupatme
Posts: 2
Joined: Apr 2003

It may seem like forever, but it is in fact (at least for me) about 4 to 6 weeks. I can understand your frustration totally. Just hang in there and you will slowly begin to taste things again. In my case (tonsillar) my taste buds returned completely. However, I was not as fortunante with my salivary function. I wish you well.

annie803's picture
annie803
Posts: 1
Joined: Aug 2014

2 yrs for me  still cant smell or taste but my stoma sure can lol they told me may never get it back my ent  said use the lazy yawn it does help sometimes the rubber on my vaccum went never smelled it and i know its awful smell lol my taste not good either

sita
Posts: 2
Joined: Mar 2004

Hang in there, you're almost done. It took me about 6 weeks. Be prepared for things to taste a little different - until you start to remember what things taste like. I was shattered to find that peanut butter cups tasted like chili, but only in the beginning!

huni
Posts: 3
Joined: Mar 2004

Can he taste anything? My man went thru basically the same thing and lost his taste buds and the dr. will tell you "it depends". If there are things he can taste ask what part of the tongue he can taste them on. Or what does it taste like...the tongue has (I think) 7 taste zones. Then concentrate on those tastes. Mine, of course, could taste steak and lobster....nothing cheap!!! lol....I didn't care. That's what he got.

In some cases the foods loved the most can taste like metal or nothing. Just keep trying....I did "power shakes" of ice cream, milk or cream, chocolate syrup, yogurt, fruit, that wasn't really that acidic because it burns like hell on the new skin in the throat and boost or any hi carb/body building stuff available. The cool effect of the icecream felt good on the sore throat and got the nutrition in there. Hope this helps.

Ramseur7
Posts: 5
Joined: Mar 2004

I thank everyone who has responded to my message. Hopefully he will have taste buds soon. It is not that he has no taste buds...things just taste terrible. Everything tastes so bad to him that sometimes if he tries something, the gag reflex sets in. He is on Boost Plus shakes made with ice cream and whole milk. Occasionally he will eat/drink chicken broth, although it does not taste good. Just this week, water has been tasting metallic and yogurt tastes like aluminum foil. I hope he can taste steak and lobster! He would love that. How could your husband swallow the steak? Wasn't that hard? Oh yeah, his skin is looking good now. He used Biafine and Emu Oil.

Joni62
Posts: 1
Joined: Mar 2004

My husband was recently diagonsed with the exact same cancer. He underwent a radical neck dissection in Feb. and will begin radiation on the 22 as well as Chemo. Reading your messages I have gained a real insight to the future and I thank you for sharing this.

acedamama's picture
acedamama
Posts: 12
Joined: Jan 2013

My hisband is 8 treatments into radiatin for SCC of the larynx and says everything tastes like garbage - even water. Can you tell me how long this will last? Thanks!

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

You might try putting some blueberries in the water, the infusion helps some to take away the swamp water taste

steve

spector551's picture
spector551
Posts: 109
Joined: Nov 2013

Good suggestion, Steve. Lemon juice works very well too.

 

God bless,

Jamie

huni
Posts: 3
Joined: Mar 2004

Sorry.....put it all in a blender and make a shake or a frappe out of it. LOL.

another thing....if they did radiation....get some pure aloe and just slather it on the area...should have been done from the beginning. The skin will slough off but, hopefully, with the aloe will leave no scar. I went to a local health food store and got 98% pure aloe and he just put it on after every treatment...he had no scaring...get the stuff that has no cream, perfume or anything else. That's important

karenleung
Posts: 13
Joined: Nov 2002

Well for me, I never really lost all my taste buds during or after treatment. I had 48 rounds of radiation and concurrent chemotherapy to treat my advanced stage of tonsil cancer. But some food doesn't taste the same as before especially the sweet one. No problem with the salty and bitter one. No spicy food because it burns my tongue and throat. I learn to imagine the original taste when eating food that has a different taste.Loss of taste buds is not so frustrating as loss of saliva glands in my case.

RoyR
Posts: 4
Joined: Dec 2003

I agree with the comment of a couple other people that the loss of saliva seems the more serious consequence than the loss of taste. Without taste you can still eat, but without saliva other problems can grow. For instance, I now have obstructive sleep apnea which is partly related to no saliva. When I do something physical for about 10 minutes, then I need to stop and get water otherwise my tongue sticking to the roof of my mouth stops me from breathing. I was given amifostine as a cytoprotectant during radiation but had an allergic reaction to the amifostine. One lesson I learned from that is that you should get anti-histamines with the amifostine. For sleep now I recommend a warm air humidifier. For no taste I have no recommendation other than what has already been said.

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justnita
Posts: 1
Joined: Mar 2004

My husband had extensive surgery to his throat, and 10 weeks of daily radiation (5days a week) in 1994. The changes he mostly noticed and continues to notice, are things taste more spicy than they actually are, including catsup (which he loves, just not as much as before) He also found that anything tart, became much more so. His taste for sweets is great and his craving for them has greatly increased. He says you just learn to adjust to the different tastes. Hope this helps some.

rich733
Posts: 1
Joined: Mar 2004

I had sqaumus on the left lateral tongue, diagonsed in 10/02 T2 M0; on 11/20/02 underwent radical neck dissection which removed 53 lymph nodes and the large salivary gland on the left side. Also had a muscle flap from the neck flipped over to close a communication in the mouth base. The tongue was reduced by 1/3 in a hemiglossectomy. Recuperated through December, then did 33 radiation treatments, no chemo. Tastebuds went away about half way thru radiation.
After the mouth mess, for about six months and anemia (hospital stay) the summer was when the buds started to return. Of course the whole mouth pH changed and sensitive to many things. Bland foods and puree works okay. Now it is March '04 and the taste buds are back, but missing those where surgery took them. Most foods
are palatable but beef is cardboard, no subtle flavors are recognized. I have tried reintroducing certain foods in the diet, but no avail. Overall, Boost, the blender, soft fish and yogurt smoothies keep me going. Every once in a while a cheeseburger with milk is good, but takes 1/2 hour to eat, since I have limited mobility of the tongue. Biggest issue now is full teeth reconstruction due to radiation induced decay and the loss of salivary output. But overall, I'm doing well and trying to gain weight. Let me know if you want more on the experience

Reggie13
Posts: 3
Joined: Mar 2004

Hi Ramseur7,
I, too, was diagnosed with sqamous cell carcinoma of the base tongue in April of 2003. I had both chemo and radiation treatment for 7 weeks. My doctors said studies show that this is the best way to treat this. I did have a peg tube inserted and still have it. It's been almost 7 months since I completed my treatments. I still do not have any salivary glands or taste buds. The doctors said that they should come back but don't know when. My Faith is the only thing that keeps me going. I can relate to you in wishing that at least you had the taste buds. I, too, think I could tolerate things much better if I had them. I want to eat soooooooooooooooo bad. I know this is not the answer to your question but I just wanted you to know that someone else out there is going through exactly what you are. Sometimes it helps to know this. Please feel free to write me if you wish. With your permission, I will had you to my prayer list.
Hang in there Buddy,
Reggie
(Reggie13 from CSN)

Ramseur7
Posts: 5
Joined: Mar 2004

Thanks for all the replies! Reggie, it would be great to be added to your prayer list. I would also like to add you to mine. We realized early on during treatment that the strength that God gives is truly amazing. I can't imagine getting through this without faith. I hope you get to eat soon.

bp360's picture
bp360
Posts: 2
Joined: Jul 2012

Hi Reggie - I hope this note find you well. I see its been 8 years since this post. Did your taste buds return to normal. Do you remember what foods tasted right/good first?  Did you need swallow therapy

thanks

bill

BrendonV
Posts: 1
Joined: Oct 2009

I am four years out from treatment for squamas cell carcinoma throat cancer.  I had radiation and chemo.  I lost about 50 lbs and had to have a feeding tube for feeding with jevity, could not swallow even liquids for many months.  Eventually I was able to drink the jevity and I had the tube removed.  At first it tasted so bad I had to hold my nose, but eventually I got used to it.  After about a year I was able suplement the jevity with home made chicken broth.  After two years I was able to eat and enjoy smoked salmon. Then oysters, but my main nutrition was jevity.   This was three years out of treatment and I had almost given up the idea of ever getting back to a regular diet.  This was three years out of treatment and I had almost given up the idea of ever getting back to a regular diet, but I started to develop a cholesterol problem due to large amount of soy in the jevity, so I became more motivated to eat more foods.  I found that I was able to eat spicy foods like curry and hot Chinese foods, but I could not really eat dry foods like meat, potatoes or bread, or anything sweet.  I am now four years out of treatment and I am eating virtually everything, but I still prefer spicy foods and moist foods.  I look back now and wonder if I had been more agresive about trying different foods, I might have returned to normal more rapidly, however, the moral of the story is never give up hope.

Reggie13
Posts: 3
Joined: Mar 2004

Hello to My Fellow Survivors:
First of all, I pray that God will continue to bless each and every one of you.

I was diagnosed with Squamous Cell Carcinoma (Base of Tongue) April 2003.
Here were are, March 30, 2004 after both chemo and radiation treatments, I still do not have any salivary glands, taste buds, and remain with a peg tube due to difficulty in swallowing.
Does anyone know of a survivor who lost his/her salivary glands, only to have them return later?
I hope and pray that there is at least one out there. This would give me so much hope. I'm afraid after 10 months I may have permanently lost my salivary glands. Only Faith keeps me from depression.
If anyone can be of any help to anything I have said, I would greatly appreciate a reply.
In the meantime, I will continue to add all of you to my daily prayer list.

May God Continue to Strengthen You ALL!

Reggie

Ramseur7
Posts: 5
Joined: Mar 2004

Reggie,

Thanks for your prayers and also thanks for sharing your tremendous faith. God will sustain you!

I wanted to let you know of some things I have learned about salivary production. I have heard that acupuncture has shown good results in the return of salvia. Also, I met a guy who had treatment to the head a neck 6 years ago. He said his salvia returned to normal after 3 years. I have heard that this is definitely a possibility. I believe for some folks salvia will eventually return, but it may never be the same as it used to be. I hope that you will be one of the lucky ones and have some salvia return! Check into the acupuncture also.

Take care.

richarddharrison
Posts: 3
Joined: Dec 2012

My salivary glads and taste have improved gradually since rad and chemo. maybe it depends on treatment. But time is a healer brother. So is Jesus.

montdoug
Posts: 5
Joined: Mar 2004

I'm approaching 4 years out after treatment end. I had Squamous cell carcinoma with unknown primary of 2 neck lymph nodes. Treatment consisted of radical neck disection, max radiation due to unknown primary, constant infusion chemo for the first and last week of chemo.
I lost almost all taste for 6 to 8 months and every thing tasted different even then. Taste started returning slowly and continues to improve still. It was much improved by a year and a half. It has improved to the point I truly enjoy food again. It was very exciting as the tastes kept coming back and old favorites that had tasted bad started to taste good again, I'm a Mexican food junky and at first even katsup was too spicy, 4 years out and I'm eating jalapenos again . Some things changed more than others, red meat YUUUKK! ice cream tasted like frozen grease, still does(bummer), new favorites have replaced old favorites. For me prepairing a known favorite dish was at first very depressing cause I knew I was going to love it and what it was supposed to taste like but it was soooo different. Try new and unusual foods that are new to you, you don't know what they are supposed to taste like and you find things that taste good with no preconcieved notions.

I use Oral Balance moisturizing gel for dry mouth caused by no salive glands, big help. Sorry this is so long, it's my first post here, hang in there all, it gets better!

slevtov
Posts: 5
Joined: Dec 2008

My husband had a squamous cell carcinoma in his left tonsil, that had spread to the surrounding areas. It was treated in 2004 with radiation and chemotherapy. Once all PET/CT scans were clear, he then got immunotherapy. It is now 4 years later and he still has almost no saliva and his sense of taste is very impaired. The only food he seems to enjoy is Thai food: Somehow the spices and sauces are pleasant for him. He cannot bear to ingest foods or drinks that are cold, so now he drinks warm to hot water with meals. The foods that are best tolerated are rich ones, like whipped cream, butter, soft boiled eggs, melted cheese. For a long time his doctors put him off, saying they weren't sure when his sense of taste would return. Finally an intern admitted to him that it would probably never return. Very frustrating!

Ron45036
Posts: 4
Joined: Dec 2008

Yes Slevtov, it is VERY frustrating. I am almost 3 years post tx for squamous cell base of tongue cancer and I can relate to that frustration. I was told that it will probably never return also, and I'm constantly reminded how maddening it is. The love of my wife and family pulls me through each and every day. God Bless, Ron.

megjohnson
Posts: 1
Joined: Dec 2008

I was told by doctors that it would take months to get the taste buds back, and, i was shocked and surprised that it only took 6 to 8 weeks, just in time for thanksgiving. It's by far the worst part of treatment, including the painful parts, bc emotionally it's extremely frustrating. But, they do come back, a little at a time and it becomes quite an interesting experience. Cinnamon and pepper were the first taste buds I got back and I was obsessed with cinnabuns for the first week or so and then more complex taste buds came on after that. I even found my wine tasting skills have improved since my treatment. Weird??? very. But, all in all, they are the same and I was able to gain back most of the weight i had lost. Good luck.
Megan

Imaweiser
Posts: 1
Joined: Jan 2009

My mom 82yrs. old has/had salivary gland cancer,she had a tumor removed from behind her ear and went through 36 radiation treatments. She finished them in the middle of Nov.2008. By the time she finished her mouth was fried, ulcers on her gums, has thick skin in the back of her cheek that she bites every now and then, a spot on her ear that is still scabbed and weepy, no taste buds......it hurts to brush her teeth, even pickles on hamburgers (which by the way, taste like cardboard I've read the comments that say the same thing) pickles burn- everything is "just terrible".She can taste sweet- oh yeah she's diabetic so that isn't so great. I finally found a tooth paste that doesn't set her mouth on fire. It is training toothpaste for toddlers. I also bought her a Dora the explorer soft tooth brush for ages 2 and up for her birthday this Friday. She said both paste and brush feel really good on her gums (paste has no mint flavor which can set a sensative mouth on fire). She was using baking soda but, that was starting to dry her mouth and crack her lips. Does anyone have any other suggestions? She also wears a partial that doesn't fit so well. When they did the surgery on her tumor she sustained a little nerve damage. She has also had cyberknife procedure done on a spot on her lung, and in a couple of weeks she'll find out what they are going to do with a small tumor she has on her thyroid. By the way, she never smoked. Keep her in your prayers her name is Julia. Thanks Mary ann

tbaxter
Posts: 1
Joined: Feb 2009

I just completed treatment for my second bout with MALT lymphoma (salivary gland cancer), the first being in 2005. I was told that the production of saliva would not be the same, however that the remaining salivary glands would (over time) start to make up for the lack of the other two lost parotid glands.

I taste very few things right now, and it is very frustrating. My throat still hurts but getting better. Anything with spice tastes 10x spicier than usual. Coffee doesn't taste good. Yogurts are tasting ok to me, so I mix up a smoothie with soy milk, fresh fruit, vanilla yogurt, ice, and a little honey. Tastes pretty good, but gets old. Fresh vegetables aren't too bad either...i like them alone or sometimes with a dip, depending on what I can taste that day.

Good luck with your mom. Keep a water bottle handy at all times.

mentn
Posts: 4
Joined: Feb 2009

I had SCC right tonsil 30 IMRT with Radiation at MD Anderson. Lost taste after about 20 treatments took about six weeks for taste to start coming back> Sweets were the last tast
to come back at about 18 months I finally tasted Chocolate still not the same but bearable. Chinese food got me through
the hard times especially the spicy. Another thing right after treatment that was great were
smoothies with extra protien. Sugar free chewing gum helped to keep my mouth moist and
provided a good flavor. I am now 3 years out and having a great time. I went from 210 to 185
durring treatment but am now back to 215 I was a diet I will never forget/

grahammj13
Posts: 1
Joined: Mar 2009

I had scc in my left tonsil and had 30 imrt treatments. I went from 164lbs to 125lbs. I have been done with treatment for just over two months and am still having a hard time eating most solid food. At this point I have resorted to high calorie protein drink mix. I guess the worst part is no saliva to keep throat moist and to aid in swallowing, and this is really affecting my quality of life. Does saliva and taste come back? And to what extent have you experienced this recovery. I know everyone is different but at this point any news in this area wll be appreciated.

mjg

SASH's picture
SASH
Posts: 279
Joined: Apr 2006

Taste should be back eventually, saliva is individual and how damaged the salivary glands got with the radiation.

I still have very limited saliva so I am constantly with a water bottle to help with the dry mouth and eating.

JGE
Posts: 50
Joined: Mar 2009

Long time lurker, 1st time poster. 41 YOA, Left Base of Tongue, 2 lymph nodes, 30 IMRT, 3 doses of Chemo (high doses of each) Last treatment 11/15/2009.

The taste will get better. At 4 mos I would say I have about 75-80%. At 2 mos I had about 40-45% and I thought i would never be able to live that way. At the end of treatment, I had no taste at all. I will say it again, it will get better. One friend at 8 mos is about 85%. His friend at 1 yr + says he is almost 100% but likes different things than he did before. Also, your saliva used to "rinse" the flavors around your mouth and the enzymes in your spit started breaking down the food right away which helped bring out the flavors. We no longer have that.

As far as saliva goes, this definitely varies much more than the taste thing. First of all it depends on the type of radiation someone gets. IMRT allows the doctor to "aim" the radiation much better than other types of radiation. Years ago they just nuked everything all around the target area. Besides IMRT, it depends how much effort the radiologist takes to try and spare you some salivary gland function. They are trying to balance between insuring they get all the cancer and leaving you with some spit for quality of life.

For me, my saliva has gotten better than it was 2 mos ago. I would say that I have gone from about 25% to about 35% even tho the radiologist said it was damaged and wouldnt get any better. The ENT on the other hand said it would get better but would take a year. A fellow I have come to know that is beyond 1 year says that his did get better as time went on and is actually "pretty good". Another guy I know at 8 mos seems to be worse than mine. Really varies.

I can tell you this. A couple months ago I didnt think I would ever be able to live with the sore throat, the dry mouth and especially the lack of taste! All of these things have gotten dramatically better and the taste is tolerable for sure even if it doesnt get any better (which I hope it does). The sore throat is all but gone unless I eat a big dry meal. The saliva is probably the biggest issue that will most likely remain for the rest of my/our life.

Milk is better than water with food because it is thicker
Biotene toothpaste and mouthwash is good (no "foaming agents")
Biotene GEL gets me thru the night without water
Lots of sauces and condiments with food
Less bread and crackers
Some say Zinc supplements help with taste buds
Less talking helps keep the moisture in your mouth
Breath thru your nose as much as possible
Gum with Xylitol helps when excercising or breathing heavily
Humidifier in your room every night
Chap stick for dry lips due to dry mouth

Hope this helps!

Bobert
Posts: 4
Joined: Mar 2009

I just finished 7 weeks of rad. and Chemo. for SCC tonsil & neck. 8 days ago. My saliva productions isn't bad at this point. The lack of taste is killing me, worst thing you could do to a Italian guy. I find myself watching the food network and planning what I'm going to eat once food doesn't taste bad. I even e-mailed Jack in the box to see if I could find the old secret sauce from back in the day, boy do I need to get a life. Gald to be returning to work next week. Sounds like 4-6 weeks is the best case, hope so drinking nothing but ensure, milk, apple juice & gatoraid is getting old. I went from 247 lbs to 203 lbs at 6'4" I look way to skinny. Gald to be done, but this sucks.

SASH's picture
SASH
Posts: 279
Joined: Apr 2006

Bobert,

I too watched FoodTV and made a list of all the foods I wanted to eat once I was able and even had a never ending grocery list of foods I wanted again.

While you have lost weight, that is nothing compared to me. I went from 230 to 135 during treatments. I am just under 6'2" and one of my doctors said it looked like I just escaped from a concentration camp.

It does get better as I now eat almost anything I want. I would suggest talking to a speech pathologist who specializes in swallowing so they can make sure the foods you want to eat will flow properly down your esophagus. I once in a while I still get food caught in my throat and have to manually remove the food. This can be very scary not only for yourself, but also for others around you if you start having problems breathing.

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

i gained weight before my treatment and started at 202-lbs...i weighed in yesterday at 150lb, my taste buds have started to come back, but have to revert to hydrocodones to eat, my throat cancer was hit with 7 weeks of radiation and 3 chemos, i have managed to eat as much and rev up the program, I'm tired of trying...now, trying to cut down on drugs, they provided a crutch, but increased to help me, i never took anytime off, my throat was hit hard with radiation, i come here for stress relief and mental reliess, i come home drained, tired, depressed, i quit taking the drugs, sat in the front lawn after mowing my lawn and cried, Dr. tells me 4 weeks out, what am I expecting here, the same old raspy voice, the smell the comes from the phlem and erupts throught out the day, the soremess, does it stop? having to carry paper cup in the car so when i spit foam, i don't gagg,trash canes throug out the house, i have to spit in, we where all stricken in a different way, but i can't get a real answer. it could take months?, Years? I wish anyone a the best when you have a postitve, and a sign of hope, but whens it going to end, when can i have my voice back???, PLEASE

granmudder
Posts: 4
Joined: Aug 2014

I came acros this and you sound so much like what my husband has going on right now he just finished his tretments on the 20th.. starte at 193  .. he is 157 now and still losing ... the phlegm is driving him crazy ..please tell me how youve made out...

CivilMatt's picture
CivilMatt
Posts: 2930
Joined: May 2012

granmudder,

Welcome to the H&N forum, so sorry your husband is having a rough go of it.

With time, most of us see great improvements to taste, saliva and comfort.  Time does move  slowly, but I still see I am still moving forward.  That is to my “new normal”.

This is an older thread, if you would like more response try starting a new thread.

Matt

Justalady60
Posts: 3
Joined: Apr 2009

I guess every case is different and every patient different, I do NOT have saliva or taste other than salty or sour. My smell is still very accute though. I wish I did not have any taste because then it may be easier. Without saliva however, you do not have the enzymes to release the flavor from food. I no longer have a feeding tube after over a year and half, but am now drinking Scandishakes! That is what keeps me alive!

RoseEm's picture
RoseEm
Posts: 32
Joined: Apr 2009

My taste hasn't come back, but I think the combo of my radiation and chemo just permanently fried my tongue. Things I used to love - especially melons, strawberries are just not close to tasting the same. I also pretty much exist on Scandishakes, Ensure - but do enjoy some "real" foods. I'm a little different, though, in that there was a lot of damage to throat muscles, epiglottis (sp?), etc. I have many "forbidden" foods, which makes it slim pickings. "Eating" to me is the same as "time to take your medicine." I've gotten used to it. Kind of like giving up smoking or caffeine...tough for a while, then it just becomes my "new normal."

I know lots of people whose taste came back completely within a couple of years.

wboaz's picture
wboaz
Posts: 48
Joined: May 2008

I am over 3 years past treatment and my taste is either still changing or my brain is compensating. Sweet was the most affected taste so it has been the slowest coming back. I have learned to accept what tastes have come back and adjust. Like you strawberries haven't come back to sweet. They were like lemons at first and chocolate was very bitter. You just have to be patient and keep trying things again after a few more months.

CherokeeChick
Posts: 1
Joined: Mar 2010

As I was reading down thru these posts I actually smiled to know that there are other cancer patients out there that are goin thru EXCATLY what my dad has. he was diagnosed with squamous cell cancer (tongue cancer) december 4,2009. My dad being 51 has NEVER NEVER NEVER been sick in his life, he quit smoking 30+ years ago and quit chewing april of 2009,come may 2009 he had a sore throat. finally talked his stubborn butt into goin to the family doctor in august,she diagnosed him with strep throat from august-october,when i went to the same dr in october for my bronchitis i told her he was not doin better, that is when she "referred" him to a head/neck specialist. That is when the CTscan showed a 3cm mass on the left side of his tongue..toward the back. He got a port and a feeding tube late December. Come January 25th he had his first Chemo and radiation and he went 5 days a week for radiation and had 3 chemo treatments. He has lost his taste buds and just decided he dont want to eat within the last week. He has lost about 20 lbs since December. His radiation dr felt his throat a few weeks ago and says the mass is SHRINKING (THANK GOD) but still wants him to have a few more radiation. as of april 12th we should be completely done!!! I was just curious as to what he should do about taste buds? and i am prayin for the all the cancer patients on here that i have read about. Cancer is the most scariest thing in the world and even my dad said he wouldnt wish it upon his worst enemy!!
take care and i hope to hear more from everyone on here!!!

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

Im sure your dad feels that anything he puts in his mouth is similiar in feeling to
snacking on cement, cardboard, and other such things. My boyfriend has been out of treatment, lets see, on Friday it will be 22 weeks. He has a little bit of taste, but within 30 seconds of chewing or trying to suck on the flavor of something, it turns into, cardboard or sand in texture.
Its amazing what the radiation zaps do to a tumor. I remember his tumor getting treated and within 3 days, it had shrunk by 1/3!! So yes it is the best we have, but it also kills alot of taste ability and saliva. For many as you can read, it returns almost all the way or all the way. Everyone is different. Your dad MUST keep up whatever he must, to keep getting nutrients. If he loses too much weight they may stick him in the hospital. Dehydration is a biggie. After fat loss, then you lose muscle mass. But I know he just doesnt feel like eating because the treatment has just wrecked the joy of eating as well as the ability to properly eat. This is temporary as I am being reassured on this board.

These last 2 weeks may be the hardest on your dad as they are for many. Tell him to look for the light at the end of this tunnel. Its there. Then he can concentrate on recovery.

best of luck cherokee

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

i hit bottom and lost my muscle tone 202 to 150, the drs continues to tell me eat 5 meals a day, I'm having trouble with 3, throat hurts, on hydrocones, now trying to back off, impossible, come home exhausted from work, sit down cry, I have no voice, a whisper, and ears sore, get up and try to pull yourself together. Does this end, i can taste, but no voice, everyone tells me patience, radiation ended january 26th, the doctor i saw last week states 4 mores weeks out due to the harsness of chemo, do they now or is this a i hope is gets better, lets give it 4 more weeks, does anyone no???? the smell from the phlem burping up, or is it meds, no answers, just guesses, anyone at all, give me something to hang too. thanks. Dennis

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Again Dennis.

I was sort of where you are and know it is not a good place. While I haven't a conclusive nor definite answer to your questions, I can share my story.

Post treatment about 2 weeks out, I was still living through my PEG and in bad shape. What turned me around was getting prescribed new medications. I was on Morphine and Vicodin for the pain, couldn't really eat, no taste, heavy mucous and very very depressed. I could see no end to the suffering and it disturbed me to the core. I couldn't work. I couldn't even leave the apartment.

I was actually admitted back into hospital for about a week. The Onco Docs and nurses who knew me well almost shat themselves when they saw me and the condition I was in. They sent for the shrink. He was nice guy and quickly established I was very depressed. No surprise in hindsight though. At the time I had no idea.

They put me on a mood stabilizer, an antidepressant, and an anti-anxiety pill + Lyrica which is mainly for pain. I had my first night sleep in nearly 4 months. I immediately settled down and felt better and saw a glimmer at the end of a very long tunnel. It still took a while before I ate and I still struggle with food, but when the other things in life start to improve around you, then you place less emphasis on the crappy things so in a way, while everything now is probably crappy, you will start to identify some things improve.

That could be your energy, your sleep, the pain, the reduced mucus, your voice, your appetite or just walking out into a sunny morning and enjoying a sit in the garden.

My good periods at the start were going to Starbucks with my Laptop and reading a book and slowly slurping down a Hazelnut Toffee Shake. Not the best health wise but it was something I could get down and gave me some calories. i downloaded and read Lance Armstrong's book called "It's not about the bike". I recommend it. I looked FWD to my couple of hours there with a 15 minute walk either to and from (I actually detest Starbucks but they have nice comfortable chairs and WiFi). I noticed each week that I moved a bit easier and stayed longer, and even ordered a second beverage.

I must emphasize how the importance of getting good sleep was for my recovery. Most of the 4 pills I took each night helped the sleep. I still don't know how I went from Morphine and Vicodin to these other meds without any need for pain killers. I still take the meds but have reduced the doses and am slowly weaning off them all.

I finished treatment early october. By early Feb i was back at work full time and now I feel great. I swim laps and do light work outs and have great energy. I take a bunch or supplements and watch my diet. While I don't enjoy food in the same way, i find things that suit me and get along fine. I was also about 210lbs and now am a trim 165. Not much gain but I feel fine and now will work on rebuilding the lost muscle.

i also told myself over and over every day ("I am getting better..I am getting better....I am getting better...") Your mind need to be convinced and it can help your body take on the signal.

You will get through this Dennis, Have faith and I hate to say it, but patience. Work on the small things but please talk to your Docs about feeling so low as they can probably help you out.

Hang in there.
Scambuster

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

very inspiring. glad you shared that....
im going to make a list of the things that
have improved from 22 weeks ago for my boyfriend
so he might see a little differently.

thanks,

K

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Unfortunately, they have not for me. But it's not all-bad. Sensations, good and bad, are the rule of the eating day for me. 17-months, now, with a year after the last rad. Something about Sprite/7Up is most excellent. A can of Roadhouse Chili for lunch at work, eaten very slowly. That, too, is excellent. However, French dressing on chef-style salads- the most excellent. The chili and dressing may be extremes, but the taste sensations are okay with me. Nibbling on anything barbeque also is. Thing is- candy bars and less radical food stuffs- it's like there's no taste whatsoever.

And a big ditto from me for Scambuster's post, Kathy. I might trump him on seniority, but he has been far more pro-active in letting it be real, and knowing what's what. His words are to be heeded by all...I was Morph and ice during weeks #2&3 and #5&6, with Vicodin always available, but never used when on the Morph. 1/2-tabs of Xanax did help with the attitude thing, but never asked my Dr. for a refill after the treatment was done. Did continue with the Vicodin, though, and they do play a part in the attitude thing. Hope may be the keyword. Simply put, the Morph scared me. It took me where I needed to go in the worst of times, but it was not a place I wanted to be- a place beyond my control. Morph did serve a critical role to the positive in my endurance w/treatment, but where it takes one is the exact opposite of why we go thru treatment- to live/survive. Maybe it is not enough to say that surviving the battle is cause enough to regard one's own life as worthwhile, but the battle, in itself, does tell us all that we cared enough about our life to fight and win that battle. And, when the dawn happens over the final battlefield, there comes a time for a reckoning with oneself. Yes- Strength and Honor during the battle, but what about the time after?

The best answer to that little question can be found in how the experience changes one. In remembrance, and the mindset during the battle, there is most certainly a lost-type area after the celebration of victory has waned. The struggle continues with us all, in that things are not as they were before the C came into our lives; however, a void replaces the daily rads and often-Onco visits, and that void must be recognized for what it is. Resuming one's life in whatever capacity is it's own battle. We all know that as fact. And it is a large struggle. The best we can do is find the reasons to resume that life, latch onto those reasons, and live as the better people we are when we emerge from the battle with success. A minor battle replaces the larger one. And, though it can be just as difficult, perhaps due to the physical changes of post-treatment, the minor battle is the battle we fought the big fight for, and we must seek to make that big fight worthwhile. The seeking finds resolution within oneself, and one's Belief(s), role in life, etc. It is there to be had for all of us- WE ARE SURVIVORS. And, we are H&N- 99% of the world's people are "easy street", compared to where we been. Yeah...

Scambuster, I take my hat off to you, Brother, for how real you are.

Believe

kcass

staceya's picture
staceya
Posts: 701
Joined: Jan 2010

What are scandishakes?
About 75% of my taste and saliva is back after 3 weeks, but I had a much milder course than some of the other folks here, IMRT to mass (near tonsil) and lymph nodes. No chemo or dissection, surgery but the tumor was on a stalk, so it was more of a snip than a cut.
I cannot tell if the amifostine was a factor,having no method of comparison, but I am happy about the tastebuds.

I agree that sleep is very helpful on the healing. Except for jello (food of the gods at this moment) and boost,I can eat little bits before it either hurts too much or seems to clog up in a pile somewhere down my throat. It is funny that milk is better than water to help things go down, I've never drank so much milk in my life!

My friend made me huge batches of high protein mashed potatoes (20 grams protein in 4 oz) She will give me the recipe tomorrow and I will post it.It was a life saver..there were only a few days when the potatoes were too scratchy.

I am going to try some 7up. I am afraid of dressings..so many of them burn..but I look forward to salads in the future. I also was watching the food network and making lists of foods I want to eat when I can. Thanks all for sharing!

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

Hang in there. That was the worst part of my treatment- not being able to taste stuff. If they could market that in a pill we would not have an obesity epidemic. I lived on whole milk and high fat shakes. 1 year later I have no desire for shakes or ice cream. Please hang in there, I know it's rough. Look forward to the day you can enjoy your favorite food!

CJ_the_Man
Posts: 1
Joined: Jan 2014

I underwent 7 weeks of radiation & chemo for tonsiler cancer metatasised to the lymph nodes which I finished ealy in September 2013.  The Dr's warned me that I would lose a lot of my sense of taste & that my syliva production would be greatly impaired.

What an understatement.  My sense of taste was not lost, I could taste everything, but it all tasted like a dog-s_hit version of it's former self.  At first I was told that I could expect to have 60% of my taste back after 30 days following completion of treatment, but that time span continued to get larger, & larger.  Now I realize by reading the testimonials on this site, that the reality is it may take a very long time to get a signifigant portion of my sense of taste back, & I might not get it back at all...

That's a very depressing thought.  I always have loved to eat, & now I don't even look forward to it.  It's more of a displeasant chore, & an emotional hardship.  I read one gentleman's comment about how he broke down crying one day, & really related to it, because aside from the physical hardships associated with radiation & cancer treatment, nobody really said much about the psycological & emotional toll, which I found to be as devastating as the physical consequences.  There have been several times during this ordeal that things hit a critical point, and I wept uncontrollably because of a deep sense of loss, hopelessness & despair.  I can honestly say that I almost wished that the therapy had not been sucessful, so that I wouldn't have to go on suffering as I have.  But alas, a couple of weeks ago the results from my post treatment P.E.T. revealed no detectable cancer.

It's three months now since the end of treatment, & things have hardly improved at all for the better.  The reality is, I may only be at the beginning stages of recovery.  I really wish the Dr.s had been more up front about what the realistic outcome of the side effects were.  I have a, "Hope for the best, but be prepared for the worse", philosophy, & I was given false hope which led to an even greater disappointment in the longrun, depression & deeper despair. 

The reality of my experience is that the cancer has taken away my life.  There's a bleak prospect that it may get better in the longrun, & I have suffered greatly over the last nine months since being diagnosed, and it 'ain't over yet!  There seems very little purpose in staying alive when your life have been stripped of potential, and every day is filled with physical & emotional pain & suffering.  I don't have a wife, children, or even a family, so there's no one emotionally or financially dependent on me for me to have a reason to survive.  So I've ended up survivng, but at such a great cost, & quite frankly, in the long run I don't think it will have been worth it.

I haven't had the advantage of being able to share much about my experience, because it seems that nobody really relates to what I'm saying, & are unable to understand jst how bad it is.  It's a lot worse than I ever could have expected it to be, that's for sure.

For those of you who have got their taste back signifigantly within a short period of time, & for those of you who have loving & supportive families, quite frankly, I'm envious.  I have no reason to hang in there, but I do anyway.  It seems unfair for others that have a reason to survive don't make it, when I'm the one who, "gets", to live on, but in torment.

2014-01-03

phrannie51's picture
phrannie51
Posts: 3690
Joined: Mar 2012

I wish you would have come here and started your own thread....this is where you start one:

http://csn.cancer.org/forum/164    You'll see right under HEAD AND NECK CANCER a little link that says: "Post new forum topic"...click that and start a new thread of your own, so everyone will go see it....this thread is nearly 10 years old.

Ah, but since you have me here, I want to tell you to not give up hope on the taste and saliva.....Gawd knows, I sure didn't have any saliva or taste at 3 months out, and I'm sorry your Dr. said you would (let's face it, NONE of our Drs.'s have ever been through treatment).  It's the rare members of this great forum who get taste back this quickly (some never even lost it...even rarer).....saliva does take time....more than 3 months, since it comes back just a little every month....you probably won't ever have it 100%, but good enough that you won't have to haul a bottle of water around every where.  Don't give up hope this early in the game.

I can relate with enjoying food as almost a pastime....that's where I was before I was diagnosed.....cheeseburgers deluxe and Mexican food were my favorites.....That was then, and this is now.....What I like to eat now isn't the same as before....(weird but healtier foods taste better these days.....like veggies).....don't get me wrong, I try icecream everyday, but still can't taste sweets....but I just look at it as a good thing, or I'd go overboard on it.  I also learned that "blander is better" when it comes to taste these days....too many spices and then I can only taste the spice.  If you want to give your taste buds an exercise, try a Chinese buffet (stay away from spicy hot things), but you can hop around your plate offering your tastebuds a surprise with every bite...wake'em up, shake'em up. 

Now you know you've been through a lot in the last few months.....and it can cause depression big time.....PLEASE tell you Dr. how you feel right now.....I think you might be surprised that having supportive families and husbands/wives isn't the answer to full out depression.  Tasting food and having saliva isn't the answer either......you might need to get on anti-depressants temporarily while your body puts itself back together.....please look into it, ok? Smile

p

If you start a new thread, just copy and paste what you wrote here, and put it there.....I want you to have the support of the whole board, and that's how to get it.  

Skiffin16's picture
Skiffin16
Posts: 8072
Joined: Sep 2009

First welcome, and you might want to post on a new thread as this one is quite old, or at least from the original post...

Now to the meat of it...

In reality at only a few months out, you are still really just getting over treatment and in the very early stages of recovery...

Will that take you to the place you want to be as for taste..., not sure. You really didn't mention anything else that I caught other than taste as for physical problems. But as you have read, it's going to take awhile..., that could be a few more months for enough changes to notice, or a year or so to make significant changes..., or somewhere in between. True a few have not made much progress, but many have..., and very very few at three months...

Now as for another observation, and I could be off base here....

Emotions and having your head wrapped around the diagnosis, treatment, recovery and longevity...

A lot of people here have had depression problems..., it's not uncommon and certainly nothing that can't be addressed given communication with doctors and medical professionals.

You might want to consider talking to a few to help with dealing with your situation and your thoughts and feelings you are going through...

Thoughts and prayers your way....

Everyone is significant here..., and in society. You have a story, and one that I'm sure can benefit others...

Best,

John

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