I know this is on the board and I did do a search for taste buds and after reading last night for over two hours I found just a small amount of info. I don't know if I just don't know the trick to discriminate searching or what So anyway - Dan has been asking me about this and I'm trying to give him an average or a range.

Thanks!

It varies a lot by the individual. My Oncologist had told me taste can improve for up to a year, but not to expect it to the return fully. Now at a year and a half, there continues to be improvement, but it comes slowly. Still have problems with even a little hot spice, and sweetness faded as I eat.

Michelle

Just search for taste


Lots here, and lots of varying results.

Kevin

Michelle,

Bill is now seven 1/2 months post treatment. He explains that everything tastewise is still "different." He savors salty as that is the least affected. Sweets seem to be the most affected, in particular, fruits are not as enjoyable to him but he eats the cookies that my Mom makes in a heartbeat. I notice that he doesn't go for Bleu Cheese dressing anymore..it used to be his favorite (tends to use Ranch.) He still eats everything though so it seems nothing disgusts him. My experience, from reading the boards, is that patients are still recovering even a year and 1/2 out.

Oh, and Bill doesn't complain about things "burning" him...even spicy or acidic things.

Deb

Michelle,

Everyone can be different due to many many different variables starting with where the beam was directed, etc. Most of us recover the taste very slowly even though we, as patients, are quick to recognize subtle improvements as BIG IMPROVEMENTS. Here's what I wrote during my recovery:

AT 4 MONTHS I SAID:

Today marks the end of the 4th month after completeing my Tx and I thought it would be useful to others to post my progress.

Taste-I have almost all my taste back. I would rate it 9 out of 10.

Hair on the back of my head-Beginning to grow back.

Weight-Lost 35 pounds and have regained 5. Not sure I want much more back.

High frequency hearing loss-Was tested at Moffitt and they confirmed permanent HF hearing loss caused by Cisplatium. MO wasn't so sure and said to wait. Either I am getting use to it or it has slightly improved.

Mental capacity-Fully recovered or I'm worse off than I think. LOL

Physical-Muscle strenght 7 out of my 10. Haven't exercised like I use to due to dry mouth.

Stamina-Am able to almost work as much as I use to. Work 9am to 7:30pm. Use to work till 9pm but I am pretty tired by 7:30. Can't keep my eyes open by 10 to 11pm.

Turkey chin-Gobble, gobble, still have it.

Dry mouth-This has been the worst side effect to deal with by far. Not in pain but in affecting quality of life. Just in the last 2 weeks I have noticed a slight change for the better. It's hard to describe but it has improved. I would rate this 9 out of 10 being the worst.

All the other side effects I was dealing with at the end of Tx went away around the 3rd week post TX. Those being: nausea, throat pain, constipation, and maybe a few that I can't even remember now.

All in all I am very pleased with my progress especially considering the way I felt at the end of my Tx and I hope that others who are currently in or recently completed Tx will find this useful.

AT 5 MONTHS I SAID:

One month ago (duh) I posted "How I am 4 months post Tx" and I didn't expect to give an update so soon but something has happened to change my mind. I will first start with the 4 month post for those that didn't see it:

Today marks the end of the 4th month after completeing my Tx and I thought it would be useful to others to post my progress.

Taste-I have almost all my taste back. I would rate it 9 out of 10.

Hair on the back of my head-Beginning to grow back.

Weight-Lost 35 pounds and have regained 5. Not sure I want much more back.

High frequency hearing loss-Was tested at Moffitt and they confirmed permanent HF hearing loss caused by Cisplatium. MO wasn't so sure and said to wait. Either I am getting use to it or it has slightly improved.

Mental capacity-Fully recovered or I'm worse off than I think. LOL

Physical-Muscle strenght 7 out of my 10. Haven't exercised like I use to due to dry mouth.

Stamina-Am able to almost work as much as I use to. Work 9am to 7:30pm. Use to work till 9pm but I am pretty tired by 7:30. Can't keep my eyes open by 10 to 11pm.

Turkey chin-Gobble, gobble, still have it.

Dry mouth-This has been the worst side effect to deal with by far. Not in pain but in affecting quality of life. Just in the last 2 weeks I have noticed a slight change for the better. It's hard to describe but it has improved. I would rate this 9 out of 10 being the worst.

All the other side effects I was dealing with at the end of Tx went away around the 3rd week post TX. Those being: nausea, throat pain, constipation, and maybe a few that I can't even remember now.

All in all I am very pleased with my progress especially considering the way I felt at the end of my Tx and I hope that others who are currently in or recently completed Tx will find this useful.

That was one month ago.

As I said I wasn't planning to followup so soon but just in the past 2 weeks something has improved with my dry mouth. I say something because it's hard to define BUT it has made a great improvement in my eating. I still sip water throughout the day but I don't wake up during the night with mouth related problems any more and my eating has taken a hugh turn for the better. I even look forward to meals now as I am beginning to try some of my old favorites that I had given up on. For instance, I ate a small thin crust pizza by myself the other day (well not all the crust) and I even ate a whole slice without having to swallow liquid. I find myself eating almost like normal, I mean taking 2 or 3 fork fulls before I feel the urge to drink. I don't think my taste has improved but that dry mouth crap has.

It's really hard to describe but something has happened and I wanted to share this improvement so that others may be on the lookout.

THEN AROUND 16 MONTHS POST TX:

I can't find my post but I remember telling everyone that I again noticed an improvement and I could just about taste everything; all tastes lasted throughout the meal as opposed to a few bites and my saliva had improved as well.

NOW:

Pretty much the same as 16 months. I am not dependent on water at all; I do chew Biotene gum a lot; I eat what I want; I gain weight just like before and I am always hungry; there is nothing I won't eat and I crave sweets more than I ever have.

He and you for that matter must just let his recovery takes it's own course and just expect it to take well over a year. My RO says I can recover well up to 2 years so I still a few more potential months left.

Michelle,

Everyone can be different due to many many different variables starting with where the beam was directed, etc. Most of us recover the taste very slowly even though we, as patients, are quick to recognize subtle improvements as BIG IMPROVEMENTS. Here's what I wrote during my recovery:

AT 4 MONTHS I SAID:

Today marks the end of the 4th month after completing my Tx and I thought it would be useful to others to post my progress.

Taste-I have almost all my taste back. I would rate it 9 out of 10.

Hair on the back of my head-Beginning to grow back.

Weight-Lost 35 pounds and have regained 5. Not sure I want much more back.

High frequency hearing loss-Was tested at Moffitt and they confirmed permanent HF hearing loss caused by Cisplatium. MO wasn't so sure and said to wait. Either I am getting use to it or it has slightly improved.

Mental capacity-Fully recovered or I'm worse off than I think. LOL

Physical-Muscle strenght 7 out of my 10. Haven't exercised like I use to due to dry mouth.

Stamina-Am able to almost work as much as I use to. Work 9am to 7:30pm. Use to work till 9pm but I am pretty tired by 7:30. Can't keep my eyes open by 10 to 11pm.

Turkey chin-Gobble, gobble, still have it.

Dry mouth-This has been the worst side effect to deal with by far. Not in pain but in affecting quality of life. Just in the last 2 weeks I have noticed a slight change for the better. It's hard to describe but it has improved. I would rate this 9 out of 10 being the worst.

All the other side effects I was dealing with at the end of Tx went away around the 3rd week post TX. Those being: nausea, throat pain, constipation, and maybe a few that I can't even remember now.

All in all I am very pleased with my progress especially considering the way I felt at the end of my Tx and I hope that others who are currently in or recently completed Tx will find this useful.

AT 5 MONTHS I SAID:

One month ago (duh) I posted "How I am 4 months post Tx" and I didn't expect to give an update so soon but something has happened to change my mind. I will first start with the 4 month post for those that didn't see it:

(LEFT THE REPEAT OUT)

As I said I wasn't planning to followup so soon but just in the past 2 weeks something has improved with my dry mouth. I say something because it's hard to define BUT it has made a great improvement in my eating. I still sip water throughout the day but I don't wake up during the night with mouth related problems any more and my eating has taken a hugh turn for the better. I even look forward to meals now as I am beginning to try some of my old favorites that I had given up on. For instance, I ate a small thin crust pizza by myself the other day (well not all the crust) and I even ate a whole slice without having to swallow liquid. I find myself eating almost like normal, I mean taking 2 or 3 fork fulls before I feel the urge to drink. I don't think my taste has improved but that dry mouth crap has.

It's really hard to describe but something has happened and I wanted to share this improvement so that others may be on the lookout.

THEN AROUND 16 MONTHS POST TX:

I can't find my post but I remember telling everyone that I again noticed an improvement and I could just about taste everything; all tastes lasted throughout the meal as opposed to a few bites and my saliva had improved as well.

NOW:

Pretty much the same as 16 months. I am not dependent on water at all; I do chew Biotene gum a lot; I eat what I want; I gain weight just like before and I am always hungry; there is nothing I won't eat and I crave sweets more than I ever have. The only things I could improve on would be better saliva on subtle food tastes.

He and you for that matter must just let his recovery takes it's own course and just expect it to take well over a year. My RO says I can recover well up to 2 years so I still a few more potential months left.

The biggest thing I notice about my taste or lack of it is that things just plain don't taste "right." (I'm a year out of treatment) It is so difficult to describe - but it seems that complexity is gone. What I taste seems to be in "pieces" and the tastes don't blend like they are supposed to. The simpler the food (in terms of the less processed) the better - peas taste like peas, green beans taste like green beans - but adding in multiple combinations at one time starts throwing my taste buds way out of whack. So, for example, a gravy tastes weird to me...I taste multiple different components and they don't all blend together into "gravy" taste. I also seem to be tasting chemical tastes very strongly - I've stopped drinking tap water because all I taste is a very strong chlorine taste....no one else in family can taste it, but it is overwhelming to me.

I also have stopped eating any meat at all - the taste of meat is absolutely fetid to me. Pardon the description, but any meat tastes like something rotten in my mouth. I've tried on multiple different occasions to see if it has improved, but as of Sunday it was still really disgusting.

All in all though, I'm not complaining. I do taste SOMETHING at least - which is far different than during treatment. Veggies and fruits all taste good - and I find that those are the foods that I most looking forward to eating.

Hey Lisa --

I understand completely -- I was about 2 - 3 weeks behind you in the treatment process, as you can tell from my signature.

I have the same feeling --- taste is pretty basic, and not very "full" right now. Chocolate is kind of grainy and bitter to me right now. Beef is OK, chicken so-so, pork not bad. Eggs and fruits pretty good.

It's the "new normal" as they say, and I am hopeful that there will be more improvement, but willing to accept it if there isn't.

On the bright side, other than neck and shoulder issues from the radiation and neck dissection, I have been very luck so far. Congrats on your clear scans!!!

Lisa and Jeff,

Don't give up yet. I felt the same way you did but at 16 months post something changed for the much better and now I don't care if I improve anymore. I taste everything except subtle tastes and I enjoy eating as much as I did pre Tx. I eat what I want and I don't have to have liquid surrounding me like I did at your stage.

I have been out of treatment for 4 1/2 months. I have found that I can eat something 1 day and the next time it taste different like sour or even burning my tongue. Like ketchup and ranch dressing etc.. So now I take alttle taste of everyting to make sure my taste buds can handle it. Everyone says it just takes time and everyone is different.