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Taste and saliva

btinsman
Posts: 2
Joined: Jan 2013

Hello, I know there have been posts on this already but I wanted to start a new thread.

So my story, I am 23 years old and have head and neck cancer. I have to do 35 rounds of radiation, which I am on number 19 and 9 weekly doses of chemo, on 6 I believe and then 3 more monthly doses of chemo. Shortly after starting radiation I lost all sense of taste to the point where I have given up eating and just do tube feeding because as soon as I get food in my mouth my stomach starts to turn and lack of saliva makes it hard to swallow any way.

my concern/question is how long till my sense of taste comes back and if it does not come back, god forbid, is there any medical procedures that can give u taste? I am very worried about not bein able to taste, I love food and one of my favorite weekend things is trying new restaurants. I had a fsirly bland sense of taste to begin with due to I have no sense of smell but never being able to taste food again the tought is unimaginable. And since its the main reason I haven't ate I fear what I will so in the future. I weighed 140lbs going into this and already lost 20 I can't afford to lose anymore and I am not sure how I will be able to eat again if I can't get my taste back. There has to be a way pls help!!

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

I had similar treatment, similar results with saliva and taste..., no PEG though.

Everyone is different and recovers differently.

Even though on the PEG, you need to make sure to use your throat muscles though... You could lost the ability to swallow if you don't. That would totally stink for when you are NED, but can't eat again... So don't go there.

I can't think of anyone on here in my forur years post TX that hasn't gotten their taste and saliva back eventually. Most get it back within the 85 - 100% range, a few are still struggling for that.

It might start back within a few months, to taking nearly two plus years to get to where I was at that time...100% taste back, and around 95% or so of saliva.

Hang in there, it'll get much better....

and I love food as well...

Best ~ John

 

ditto1
Posts: 634
Joined: Mar 2012

Not much I can add to what all the other folks have told you all of which is very accurate.  So my offering is Im now 5 months out and I can pretty much eat anything that my taste buds approve of.   My issue and most Im sure for others at this stage is the limited amount I can eat.  I used to be the Man Vs. Food kind of guy more the better, now Im lucky if I can finish 2 eggs, or few bites of Mac and Cheese etc.  Im ok with that I would rather eat a little and enjoy the taste than alot with no taste.  I lost 30 lbs during tx and I a little dude to start with so im sure the stomach shrunk as well.  Still trouble with bread products so pretty much not in my diet plans yet.  So as they said keep swallowing, and you will get thru  this just fine.  Im still waiting on my first Culvers double cheese burgerl but thats on my wish list for now, who knows maybe will get one down in the next month or two.  So welcome to our club, not where you wanted to be but its a great place to make it thru your journey, the folks are great.

phrannie51's picture
phrannie51
Posts: 3786
Joined: Mar 2012

You're going to have to heal after treatment....so patience will be your friend.  Losing your taste and your saliva is perfectly normal, and I can tell you were aware that this was going to happen.  Getting it back after treatment will take a while.  The three chemo's you will have after rads are over, will also play havoc with your taste buds, but between treatments, like in the third week, you'll notice a little taste coming back.  Everybody seems to suffer from taste fatigue after treatments are over....that is....that the first bite is wonderful, and all taste is gone by the third bite.  That too improves...SLOWLY.  I know it's easy at 23 to think in absolutes "always", "forever"....but chances are that won't be the case...tho, everybody is different.....some have gotten a lot of taste back within months of treatment....some of us, it's going to take a while....I'm going on 7 months from the last radiation (5 months from the last chemo)....and taste is still pretty dull...saliva is at about 20%.....I'm just saying keep the absolutes out of your head....and be patient....

As for just using your tube because of the lack of taste...no no no no no......You MUST swallow something every day, even if it's just one can of Ensure, or water.....something.  Lack of taste and saliva is nothing compared to what you'll have to go thru to get your swallow-er back.  It'd be a waste to get your buds and your "wet" back if you can't swallow anything.  You also need all the nutrition you can get....eating for pleasure is now on the back burner.....you're now eating to live....so take in as much as you can every single day....it doesn't matter what it tastes like.

You're going to do ok....you're young and strong....and the odds are that your taste and saliva will be back....

p

corleone's picture
corleone
Posts: 168
Joined: Jul 2012

Sorry you had to join this club, but you are in good hands here. Everybody’s experience is different. Here’s mine, in a nutshell (for treatments I followed, please see my profile): I am 4.5 months post rad and 1.5 month post last chemo, and I doing quite well! Taste almost back (except for sour), saliva not yet (~10%). I am eating “normal” and I got rid of the G tube a few days ago. So the idea is that the taste will get back very slowly, but it will. In my case the first to reappear was the one for salt (after 1 month post radiation). 2 months post radiation the one for sweet came back, followed, after another month, by that for bitter. The saliva hasn’t returned yet though, but I can eat almost anything, including bread and meat (if I use plenty of water or tea). You’ll have taste “fatigue” meaning that even when the taste comes back, the first few months you’ll feel it only for the first 2-3 bites, than fades away quickly. Later on, the taste is more persistent. Very important: keep swallowing, even if it’s only water or tea, regardless if you have a crappy taste or not. It’s vital to keep exercising those muscles. It’s very unfortunate you have to go through this at this age, but you’ll get through the treatment, a young body recovers much quicker.

btinsman
Posts: 2
Joined: Jan 2013

Thanks for the comments so far, it's encouraging to know that I most likely won't lose my taste forever, I can deal with the recovery period as long as it comes back eventually ha. And also I never knew nor thought about my throat muscles getting weak and being unable to swallow I will have to make sure to get something down everyday from here on out I have noticed a slight difficultly in swallowing even water so thanks alot for that insight possibly saved me from even more torture ha. What kind of foods do you guys eat, the lack of saliva makes it difficult to eat solid foods which I'm sure you are all aware of. Thanks again in advanace you have been really helpful.

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

Anything to get you to swallow.  I'm having the same issue, just finished Rad #17 and swallowing is a chore (from throat pain) and trying hard to not fall into the trap of not swallowing.

 

Joe Cortney

Dallas, TX

lts's picture
lts
Posts: 75
Joined: Nov 2012

I am 18 of 15 rad treatments and eating is a battle of will power for me now. Taste is gone but we must eat. I do not have a pic nor do I want one so I will do all I can. Chew and swallow, chew and swallow...................!

Luke

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

First off, Welcome to our little slice if the internet...your in good hands with allstate ...I mean all of us..lol

I'm 9 months out of 33 rads and my taste is way off. I can eat anything that I did before ( except dry crackers)

Iv'e even eaten spicy wings and currys. I think my problem is that my smell is way off as well due to a

nasopharyangeal stenosis as I cannot breath through my nose so when I am eating I have to stop to

take a breath. My Saliva is coming back alot quicker bur I still drink a little water with meals and the dry mouth

is worse at night as I have to breathe through the mouth but I sleep all through the night and if I have to go to

the bathroom I take a sip of water and go back to sleep.

so I dream of drool on the pillow in the mornings and I'm just being patient that my taste will return

LIFE IS GOOD.

God bless

Tonsil Dad,

Dan.

phrannie51's picture
phrannie51
Posts: 3786
Joined: Mar 2012

a number of things during treatment.  I had the best luck with creamy soups....tho mac and cheese with milk in it to make it soupy worked, too.  My sister made me cauliflower and cheese soup (which shockingly, I could taste!)....Shrimp salad made with pasta was a good one, too.  Instead of water, I washed everything down with whole milk.....more nutrition, more calories, and and strangely enough, I could kinda taste milk, too.....you can always wash down an Ensure, too....just as long as you're swallowing something.

p

Aussieuke's picture
Aussieuke
Posts: 6
Joined: Sep 2012

Stick at it as best you can. I found spaghetti such as Cabenarah  with lots of sauce is ok or try soups such as minestrone with lots of vegs.Chinese take away noodles with a sauce may work.You may not want a big dish as sometimes it can be laborious to eat a big meal. Meat (any kind) will be bland for a while (like cardboard) and milk will help.Better than water. As a moistener when walking I buy a drink we have here called 'Breaker', coffee flavored milk etc with high sugar content and full cream milk.If some saliva comes back(and it will) I moved to 'cup o soups' such as chicken or beef .The warm water helps move the sticky flem that starts to sit on your larynx/gullet.I am now starting third month since last Rad/Chemo and each week has been a different challenge.One step at a time and it will get better.Good luck.

CivilMatt's picture
CivilMatt
Posts: 3013
Joined: May 2012

btinsman,

 

Greetings fellow H&N warrior, let us worry together for a moment.

 

Old Matt

Loved food, loved restaurants, had the best taste buds around (good as anybody)

 

Treatment Matt

No taste, PEG installed and in use plus drink 1 meal a day, plus lots and lots of water, lots.  Kept sampling foods constantly.

 

Post Treatment Matt

No taste, hate taste, can’t stand texture or feel of virtually all foods, very happy living off smoothies.  Always trying foods, some luck with sweet tea, corn on the cob and tomatoes (go figure). 

 

All of a sudden, food feels ok again at approximately 7 months post.  Now at 9+ months post eating everything and taste buds are relearning.

 

Still drinking lots and lots of water (never stopped) and it takes 2 -3 glasses per meal.

 

Experimental Matt

Transplant taste buds from a pig, it works but subjects tend to prefer slop instead of real food.

 

Pragmatic Matt

I was never mad or really sad about losing my taste buds, it was just the price to pay to fight cancer successfully.  I mean what are your options?  One very good un-kept secret is everyone at the H&N forum understands you and “gets it” when you bring up eating or taste issues.

 

Best,

 

Matt

donfoo's picture
donfoo
Posts: 1277
Joined: Dec 2012

Experimental Matt

Transplant taste buds from a pig, it works but subjects tend to prefer slop instead of real food.


I guess this one is a tradeoff - so how does slop taste like? LOL

With tastebuds so out of whack what does really strongly flavored things taste like? Does it just make things taste worse? If you eat Indian, there are those really strong pickled items. Would those taste so bad you gag or still no taste from anything?

CivilMatt's picture
CivilMatt
Posts: 3013
Joined: May 2012

It all depends where you are on the taste pyramid.  At my lowest taste sensation everything tasted and felt like Crisco shortening, barley could any taste get through; I hated pretty much everything but my smoothies.  It was the blasted awful texture and feel as much as the taste no taste.  It is complicated for layman (family & friends) to understand, but people on the H&N forum do understand.

 

Funny thing, over the summer I did find satisfaction in tomatoes drenched in olive oil with a heavy sprinkling of cayenne pepper.

 

Warning:  No pigs lost their life in the making of this thread (at least not by me).

 

Good luck in your journey down Taste Bud Lane, it is not guaranteed to be flavorful, but it is unforgettable.

 

Matt

phrannie51's picture
phrannie51
Posts: 3786
Joined: Mar 2012

...for me, the blander stuff had more taste than the strong flavors.  My sister used to make me Magic Mineral broth....to her it was very bland....to me it was manna from heaven.  I could also taste milk all thru radiation and drank a half gallon a day.  Even today, months later, stronger flavors have more sensation than taste.  I've tried Mexican 3 times experimentally, and all I can taste is chili powder....can't taste the other spices....and generally it's too hot, anyway.  I tried getting it more tasty with salsa, and all that did was hurt...LOL.  I'm determined tho, so will keep trying.

p

phrannie51's picture
phrannie51
Posts: 3786
Joined: Mar 2012

Oops, my clicker finger got the best of me...Laughing

donfoo's picture
donfoo
Posts: 1277
Joined: Dec 2012

Actually looking forward to the challenge of seeing what concotions will taste the best. I hope some combo of this and that will offer some stimulation and cut through the taste killers. I have to get past the "Crisco shortening" experience, now, that sounds nasty!

Don

guerreje's picture
guerreje
Posts: 2
Joined: Feb 2013

Experimental Matt made me laugh out loud!  So welcome right now!!!  Laughing

Vee1
Posts: 59
Joined: Nov 2012

Hi,

I add Benecalorie a 330 calorie supplement to anything I blend for my dad.  It is tasteless and only 1.5 ounces.  I add it to soups, Boost, blended cakes, pies, noodles...ANYthing that he can get down.  There is also a Very High Calorie Boost that is 530 calories that I order online. (Both from Amazon).  I squirt in a bit of ice cream flavoring in the vanilla boost (adds another 100 calories) or peanut butter or heavy cream.  Right now it is all about calories not eating "healthy" for us...not everybody can/should do this, but it is another idea to ponder.

23...

and that is unfair no matter what.

-V

 

Vee1
Posts: 59
Joined: Nov 2012

Dad has found that "cold" does not work for him and things need to be nuked for about 15-30 seconds.  Cold seems to hurt to swallow...

-V

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

based on my experience...don't worry about taste--it'll come back when it comes.

worry about weight and calories.

I dropped down to 115 lbs. myself, and my docs threatened me with hospitalization and feeding via IV tube. yikes! I started pumping calories into my PEG tube (minimum 1700/day, but 2000+ is better) and the weight started coming back. the weight gives you the strength to recover, and then worry about things like getting your taste back.

yes, fighting the beast at age 23 is a rough hand to be dealt. get your strength up and whup this thing. we're pulling for you! 

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

It was nice to read the encouraging responses to the OP. You're a young guy to be going through this b....

 

Having yet to begin treatments, I can't really imagine what this is going to be like until it actually happens. I've had bad colds where my tase was surpressed but I've not had my taste buds and salivary glands nuked before either.

It's encouraging to know that it will eventually come back even if it's not 100%, and knowing that spicy foods still will be eatable makes my obsession with Thai food a future goal!

I have the feeling I'll be living off smoothies for a while though ;(

 

 

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

Woke up this morning with my tongue burning like crazy.  Finally got that under control with mouth rinses and Muguard but found out at lunch anything I tried burned the hell out of my tongue.  So, today was Rad number 19 (11 to go) and it looks like feeding tube and milkshakes are all that's left.  And I so do love food.  <sigh>.

 

 

Joe Cortney

Dallas, TX

Mrs. Sarge
Posts: 199
Joined: Apr 2012

You can order Scandia shakes (or your cancer center pharmacy may have them) which gives you 600 cals. using  8 oz.whole milk or for added calories you could add ice cream or whipping cream.  They are delicious and will help keep your calories up!  They come in vanilla, strawberry or chocolate, at least they used to.

donfoo's picture
donfoo
Posts: 1277
Joined: Dec 2012

Joe,

So this magic "week three" is becoming reality for you, almost as clockwork. Do you suspect the rads are beating up your tongue now and could hang with you until through complete TX?

 

Hang in there!

Don

 

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

And yes, I think the burning and throat sores are here to stay and will probably get worse. The only good news is there are only 10 RADS left.  It'll be a struggle, but its almost done. 

The doc gave me my first fentanyl prescription today but I'm not quite ready to go there yet. I'm still getting along with the hydrocodin but I can see a time where I'll need 24 hour relief. 

 Wouldn't be so bad if there weren't so many great restaurant commercials.   <sigh>

 

Joe Cortney

Dallas, TX

 

 

phrannie51's picture
phrannie51
Posts: 3786
Joined: Mar 2012

The food commercials had me  drooling imaginary spit (they ran a Dairy Queen one all summer "one burger or two"....I could hardly watch it by August....cheeseburgers deluxe being one of my true faves).....By the end of treatment I was totally obessed with food.  I'd sit and watch the food channel dying to try everything.....would read cookbooks late into the night, and even started dreaming about food.....REAL food.  The neighbors were kind enough to invite me to watch them eat...I was so obessed doing that was wonderful, and while they ate we'd talk recipies....LOL.  By the third week after treatment ended, I was dipping thick slices of french bread, heavily buttered into warm vegatable soup....I couldn't really taste it, but my obession was appeased somewhat. 

p  

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

.

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

I'm telling you that more than likely it'll be back...

I just had Hot & Sour Soup tonight with House Special LoMein....

I eat Jalapenos on my cheese burgers, red pepper flakes on my pasta and pizza... wasabi and kikoman soy on my sushi, habenaro sauce and blue cheese on my blackened chicken wings from Harry's Cajun Seafood and Grill... In other words, I'm not limited by taste any longer,,, I beleive that eventually most if not all of you will get your taste back as well.

JG

AJW1966
Posts: 69
Joined: Nov 2012

Experimentation seemed to get me through some of it. I would try different soups. Sure it's discouraging and frustrating but i kept going. I found that chicken broth with noodles works, tomato soup, water with flavored protein packets added(lemonade flavor worked best for me) and so forth.

Drink water.....drink lots of water! You need the hydration. Add flavor packs to it if it tastes like it's coming from a steel pail through a garden hose.

Fear not....it is temporary. I'm day 47 post treatment and getting slowly better. Energy returning, tastes have some improvement, saliva? well that's going to take longer.

It's all subjective, no one can tell you "one month from now all your taste and saliva will come back!" Sorry, it just doesn't work that way.

 

So...keep your head up...try hard to not be discouraged and keep those swallow muscles going!

All the best and God Bless,

 

Alan

catluver96's picture
catluver96
Posts: 73
Joined: Jan 2013

Hi,

 I am new to this site and have "met" some of you through my first post a couple of weeks ago....about mouth pain and taste. Lots of great feed back and support.

 I'm at week 9 today, post radiation and chemo. I just started eating some soft solid foods almost 2 weeks ago. I lost 1/3 of my tongue and am learning how to eat with it. In addition I still have some mouth pain. Ulcers and some healing from surgery last August.

 One of my favorite foods right now is scrambled eggs with cheese. I've even added some thin sliced lunch meat ham. Milk tastes good now. I've eaten lunch meat slices rolled up. Avocados with olive oil, garlic powder and salt (don't seem to have trouble with a little salt now). Tried some take out beans and rice my hubby brought home. It was OK. I tried some canned refried beans - way too sticky.

 These foods that have some taste do fade after the first couple of bites. I think the smell and my imagination help. I've found that foods like yogurt and pudding are hard for me to eat, flavor wise. Just yuck. But I will try again at some point. 

 Another idea I want to go back to trying again is combining chicken noodle soup with garbonza beas in the blender. Added protein in the beans.

 Found spaghetti or ravioli to taste like pepper. Don't like hot peppery foods, so I won't be trying that again for a while.

 I've gotten so much good information and support from all the kind people here. Thank you for sharing. I do need the encouragement. Sometimes eating and food seem like such a chore. Thankfully we have products like Ensure Plus. That keeps me going.

:)

~Vicki

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Hi Vicki

Welcome .....and sorry you have to be part of this group at all.  If you haven't already checked it out,  take a look at the SUPERTHREAD.  It is the first entry on page 1 of this discussion board.  It is loaded with years of good information and tips from other survivors that will help with just about anything you can think of.  There are lists in there of good soft foods to try at this stage in your recovery as well as recipes for various soups and broths. 

I lost 75% of my tongue, and for me pancakes with lots of syrup was one of the first real foods I was able to eat.  Scrambled eggs worked well as you mentioned, plus pudding (chocolate only), and smoothies.  Experiment a bit until you find a "go to" food to get thru the next few weeks.  Anything acidic like tomatoes, tomato sauce, ketchup was a big NO NO and I still can't eat it 2 years after surgery.  Alfredo sauce makes everything slide down pretty well now.

I also used a protein powder mixed in with just about anything....pudding, ice cream, smoothies.  It helps with the healing process, so if you can' eat enough with beans and such, try the powder.

any other questions, just ask.  Everyone here is more than happy to help.

Best of Luck in your recovery.

Ingrid

 

HobbsDoggy
Posts: 165
Joined: Feb 2013

My taste started to come back a very little about 3 weeks ago. I don't taste things as they were, but some foods give me a vague sense of their "real" taste. I have to experiment with different foods to see what tastes OK. The taste is not good, but much better than a few weeks ago when everything tasted bad and eating was just hard work.

Like you food is very important to me, I am the family cook and eating out was very important to us. Seems selfish to worry so much about taste when life is on the line and the main thing is to beat the beast. Still it is important and part of human existence, a major part. I do have some real hope now that my ability to taste will come back even if it is so much slower than I hope.

Jama's picture
Jama
Posts: 12
Joined: Feb 2013

Hey Matt,

I was thinking a lot about making some smoothies for my husband who is just starting to feel some more pain in his throat.  Reading this post I am wondering can you or anyone tell me what kind of smoothies do you drink?  It would be much appreciated.  I have been making Russ a shake every night and he seems to like it.  The food is also tasting very bland to him too.  Sounds like par for the course.  I lost my dad to brain ca this last November.  I had the privelege of sharing in the care of him his last three months on this earth.  He kept on telling me, "You're drown'n me".  Then he would smile.  I think Russ thinks that now too.  Russ is doing quite well on trying to eat even though he can't taste anything and the taste he is expecting isn't there.  I am sorry for all of you that you are let down like that.  You are all in my prayers and keep coming back.

JT

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

Hi ya JT, just as a reminder, there is a lot of info and links on the ST concerning smoothies, and associated...

Best,

John

truebluenan's picture
truebluenan
Posts: 2
Joined: Feb 2013

Hi Matt, I had head and neck cancer in 2000 and required 32 treatments of radiation which left my throat raw and very sore. (there is a silver lining, I lost 38 kilo and got down to my ideal weight). I haven't told many people this as it sounds so bazaar, but the only drink I could tolerate at the time was, dare I say it, Coca Cola. I would have thought it was the one drink to avoid but it worked for me. I gave it up when my throat healed.

 

truebluenan's picture
truebluenan
Posts: 2
Joined: Feb 2013

As stated, everyone is different, so it is just a matter of wait and see. I had my head and neck cancer in 2000 and only regained about 50% of my taste and only a small % of my saliva. I was not expecting this, so it came as quite a shock. At the time, I was not very computer savy so did not have as much information as I would have liked and being my first time, had no idea as to what questions to ask my doctor. I think the best advise is to just concertrate on your treatment for now, at the end of it all 'it is, what it is'. After treatment the most important task is to rebuild the immune system, so maybe you could plan your food intake to that end. These days, I mostly eat 'for health'. My son-in-law is amazed that when they are get the flu, I don't get it, despite my advancing age.

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

Welcome, TBN....

You referenced one of my favorite quotes..."It is , What it is'.....

Best,

John

caspercamp's picture
caspercamp
Posts: 7
Joined: Dec 2010

It's hard for me to believe but, I'ts been about 27 months since my last treatment. I did 35 radiation sessions with 3 high dosage Cisplatin chemo treatments. Had a PEG. That saved me. I lost 50 lbs over the course of the 35 weeks of treatment and then the subsequent 7 weeks of trying to recover. My taste buds came back, albeit very slowly. A few months after I completed treatments the layer of "film" on my tongue started to slowly disappear. After that, things started to start to taste better. I used to love spicey foods. Obviously I couldn't do that for quite a while. I've noticed that I can tolerate spicier things now. I still take a Prilosec OTC every day because I'm prone to indigestion. However, most things taste normal. I will say that most sweets lack some intensity as opposed to before treatment. I'm a salty "potato chip" kinda guy anyway, so it doesn't bother me. My saliva is still an issue. It very, very gradually improved. I figure that I'm probably at about 90% of where I was pre-treatment. However, it doesn't function as quickly as it used to. My first bite of food is good but after that I have to constantly chase everything with liquid. The saliva just doesn't come back quick enough. All-in-all, life has returned to some semblance of normalcy. Having said that, I don't have the appeitite I had pre-cancer. I know that every day of my life, until I die, will be different than it would have been, had I not had cancer. I choose to look at those differences as subtle reminders of what my past life was. Not as casualties of my cancer. It was a part of my life but, I will not let it define me. I wish you all the best of luck. This is a very difficult road to travel but, it can be navigated successfully! Still amazes me to realize that I've been NED for 2 years...Surreal! God Bless Us All!

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