Couple of questions

Tragic-king

Its been almost 4 months since my treatment has ended and things are finally starting look like I might get back to something like a normal life.  I have really been surprised how long it has taken to get even to this point, though from reading on here and listening to my doctors I am supposedly doing better than most.  Luckily I never went on pain meds, though I used the PEG for quite some time afterwards and was very glad to have it.

Which brings me to my first question, about eating.  Though I have not had too much trouble with the physical aspect of eating once I restarted, the lack of taste is really a problem for me.  You can compensate for the saliva by drinking a bit of water, but since everything tasted like cardboard or worse there was no real desire to eat.  Its only been in the past week or so that I am starting to notice some sign of taste returning in a real way, but everything still has a strange flavor.  So I was wondering if there are any ideas or recommendations for things to eat in these early stages of getting your taste back?  Most likely this is too personal a thing and may be different for everyone and I am certainly trying everything I can, but any other advice would be welcome.

My second question has to do with one of the unexpected side effects of the treatment.  The technical term for the issue is paresthesia I believe, but for us laypeople its like a numbness or slight tingling in my toes and the ends of my fingers.  Its not painful and does not seem to limit my movement in an obvious way, but I was wondering if anyone has found any good treatment to help improve the symptoms and perhaps help it go away.  My oncologist said this can even be permanent, but she is a pessimist and says everything could be permanent.

Thanks for the support and best of luck to everyone going forward.

swopoe

I sometimes get parasthesia

I sometimes get parasthesia from my migraine medicine (it is a well known side effect). My neurologist said that taking vitamin C can help with that. It may be worth a try! My husband is only a week out of treatment, so he still has the lack of taste, of course, but hopefully someone can help you with that. All the best!

phrannie51

Taste is a waiting game...

I've heard of people who got it back quickly, but most had to wait it out.  Things do taste different, so the old stand by's might never be your faves again, and new things or things you didn't like before become the new go to's when you're hungry.  Shake it up....go to a buffet where you can have two bites or this, two bites of that...keeping the buds in a state of surprise.  Do it once a month, you'll see a difference.  I'm over three years out, and I ate an orange last week and loved it for the first time in 4 years...I've been eating an orange a day since.

Chances are the tingling is permanent....it's neuropathy from the chemo.  Half my foot...the front half is tingly...and my fingers are tingly almost to the palm.  I've gotten used to it until I'm trying to do something that takes a lot of dexterity, and either drop something very small, or have to watch myself do something that used to be second nature like tie a shoe lace.  Sometimes it'll go away....so don't give up.

p

Skiffin16

phrannie51 said:

Taste is a waiting game...

I've heard of people who got it back quickly, but most had to wait it out.  Things do taste different, so the old stand by's might never be your faves again, and new things or things you didn't like before become the new go to's when you're hungry.  Shake it up....go to a buffet where you can have two bites or this, two bites of that...keeping the buds in a state of surprise.  Do it once a month, you'll see a difference.  I'm over three years out, and I ate an orange last week and loved it for the first time in 4 years...I've been eating an orange a day since.

Chances are the tingling is permanent....it's neuropathy from the chemo.  Half my foot...the front half is tingly...and my fingers are tingly almost to the palm.  I've gotten used to it until I'm trying to do something that takes a lot of dexterity, and either drop something very small, or have to watch myself do something that used to be second nature like tie a shoe lace.  Sometimes it'll go away....so don't give up.

p

Experience...

Now that's the voice of experience..., love you P..

luv_freedom

I don't know what treatments

I don't know what treatments you had but I finished radiation treatments 4 months ago as well, but I do have most all of my taste back now. I still do not have the appetite that I had before all of this happened to me. I've lost a little over 20 lbs and can't seem to gain it back. Just don't seem to be that hungry like I used to be. I quit watching my weight and just let it go and not worry about it so much. I don't have the tingling in my fingers and toes, but, they are ice cold in the mornings especially. I have a hard time getting them to warm up. Then in the afternoon they seem to be alright. I don't know if it's from the radiation or the surgery on my neck removing 1 lymph node. I believe your taste will keep improving. I have more trouble with the dry mouth. I hate that! I've been taking salagen for a month now and it hasn't done anything for me at all.  

Gary

jcb2222

luv_freedom said:

I don't know what treatments

I don't know what treatments you had but I finished radiation treatments 4 months ago as well, but I do have most all of my taste back now. I still do not have the appetite that I had before all of this happened to me. I've lost a little over 20 lbs and can't seem to gain it back. Just don't seem to be that hungry like I used to be. I quit watching my weight and just let it go and not worry about it so much. I don't have the tingling in my fingers and toes, but, they are ice cold in the mornings especially. I have a hard time getting them to warm up. Then in the afternoon they seem to be alright. I don't know if it's from the radiation or the surgery on my neck removing 1 lymph node. I believe your taste will keep improving. I have more trouble with the dry mouth. I hate that! I've been taking salagen for a month now and it hasn't done anything for me at all.  

Gary

Newbie To The Group

I’m a three year survivor. I had stage 3 in one of my lymph glands. I received both radiation and chemotherapy. I had the cardboard tasting of food for a period of time but I always thought positive about it because it was better than what I was getting with the feeding tube. The only taste that I still haven’t gotten back is the taste of vanilla ice cream. I used to like hot spicy food but have to limit it to just spicy food. Dry mouth has gotten better but I think this is the best that it will get. Changes take times so don’t get discouraged and stay positive. I didn’t have any of the numbness that you are having so I can offer any information on that.

 

You have gotten through the toughest part and patience and a positive attitude will help you through the rest. 

the_wife

Taste and hunger

Your issues with taste and eating sound all too familiar. My husband is also 4 months out from chemoradiation for tonsil cancer. He is experiencing the same thing - nothing tastes good or familiar and he hasn't been hungry since the very beginning. I think your taste buds have to grow back after radiation. I've heard that the sour taste will come back first. I've also heard that physical activity should help with hunger. Not sure if that is true, but my hubby is very sedentary, so maybe...

All I know is that nothing is easy with this disease - neither the treatment or the recovery. It's really tough to stay positive, but like others have said, it's the one thing that will help carry you through. Everyone is different. Case in point - you never went on pain meds. Amazing! My hubby was in a lot of pain for quite a long time. It seems like he's had all the worst side effects one could go through and others have had it much easier, or maybe it just seems that way to me because I've got a front row seat and I feel his pain.

I think just sticking with bland, simple and easy foods is the best thing right now...Campbell's soup, oatmeal, eggs, pureed soups, smoothies, and Ensure when you can't eat. If you're adventurous, just keep trying anything and everything. 

Good luck!

 

Kent Cass

Correct, and...

As one who suffers from neck spasms every day multiple times, and has heard his Neurologist say it's Neuropathy caused by rad damage, the fingertip thing, and Phrannie's toes did give me cause to do a little research. I had the L'Hermitte's syndrome the first year, post-tx, but only in the upper body, whereas some get it in a lot more of their bodies, but the fingertip and toe tipping thing was news to me.

Paresthesia is the medical term for the fingertip thing, and likely P51's toes, and is regarded as a less-severe form of neuropathy. Interestingly, "radiation poisoning" is what's listed as one of the causes, but nothing about Chemo- though there is a very long list of other possible causes for this which leaves just about everyone on the planet capable of acquiring it. I have an Ulnar nerve issue on my left side, which in the past has gotten so bad two times that surgery was on the table of discussion, and the tingling and numbing of the little finger= that be the Ulnar nerve. Lotta people have this issue, but what made mine very bad was where the ache/pain was most severe.

As for my neck spasms, thanks to you I have learned that the correct med terminology for what I have is "symmetrical polyneuropathy."  Never heard my Neurologist call it that, and so that be a bit of an eye-opener, because the forementioned is what Drs are supposed to call it when it's, in my case, on both sides of my neck in the same general area.

Both Chemo and the Rads are listed among the causes for most Neuropathy cases, but there's also a whole range of other possible causes that even gets as basic as diet and mineral/vitamin shortages, but that might apply more to starving people, and such.

As for your taste comments, I found that eating spicier foods around the 4-month period was a good thing- that it took such foods/condiments to register as flavor with my zapped taste buds. Thing is, though, you need to have the proper perspective on eating and taste, which few here do: food is just essential "grub," and enjoying it should not even be in play. It's NUTRITION THE BODY NEEDS to heal, and stay healthy. Thinking about it along the lines of not eating because it doesn't taste good should only be taken as a sign to look for something else w/nutrition that tastes better; and, if nothing can be found, then make like that food is just essential grub you gotta eat to get and stay healthy, and eat it without complaining. Hey- we're C survivors. Just picture yourself in the old west as part of a wagon train crew, you got an old and graying cook who is not really sure what he's doing...and just eat whatever the heck the old timer made.

kcass

supagama

Kent Cass said:

Correct, and...

As one who suffers from neck spasms every day multiple times, and has heard his Neurologist say it's Neuropathy caused by rad damage, the fingertip thing, and Phrannie's toes did give me cause to do a little research. I had the L'Hermitte's syndrome the first year, post-tx, but only in the upper body, whereas some get it in a lot more of their bodies, but the fingertip and toe tipping thing was news to me.

Paresthesia is the medical term for the fingertip thing, and likely P51's toes, and is regarded as a less-severe form of neuropathy. Interestingly, "radiation poisoning" is what's listed as one of the causes, but nothing about Chemo- though there is a very long list of other possible causes for this which leaves just about everyone on the planet capable of acquiring it. I have an Ulnar nerve issue on my left side, which in the past has gotten so bad two times that surgery was on the table of discussion, and the tingling and numbing of the little finger= that be the Ulnar nerve. Lotta people have this issue, but what made mine very bad was where the ache/pain was most severe.

As for my neck spasms, thanks to you I have learned that the correct med terminology for what I have is "symmetrical polyneuropathy."  Never heard my Neurologist call it that, and so that be a bit of an eye-opener, because the forementioned is what Drs are supposed to call it when it's, in my case, on both sides of my neck in the same general area.

Both Chemo and the Rads are listed among the causes for most Neuropathy cases, but there's also a whole range of other possible causes that even gets as basic as diet and mineral/vitamin shortages, but that might apply more to starving people, and such.

As for your taste comments, I found that eating spicier foods around the 4-month period was a good thing- that it took such foods/condiments to register as flavor with my zapped taste buds. Thing is, though, you need to have the proper perspective on eating and taste, which few here do: food is just essential "grub," and enjoying it should not even be in play. It's NUTRITION THE BODY NEEDS to heal, and stay healthy. Thinking about it along the lines of not eating because it doesn't taste good should only be taken as a sign to look for something else w/nutrition that tastes better; and, if nothing can be found, then make like that food is just essential grub you gotta eat to get and stay healthy, and eat it without complaining. Hey- we're C survivors. Just picture yourself in the old west as part of a wagon train crew, you got an old and graying cook who is not really sure what he's doing...and just eat whatever the heck the old timer made.

kcass

AMEN!

Very good advice kcass..if I could swallow "crap on cardboard" right now, I think I could enjoy it, if I knew it had nutrients in it that I needed to survive until they can find a reason for this pain that keeps me from swallowing!

Wendy

jakesaround

Some things to try...

Hey King,

i am about 3 months out from my tonsil cancer treatment and my taste has recently rebounded pretty well. My advice is start with soups, I really liked the chicken based soups. You know chicken noodle, chicken and rice, etc. I tried to stay away from the tomato based stuff because for some reason that stuff just tasted rancid. Also I fell in love with over medium eggs on toast then I would cut the runny egg up and let it soak in with the toast and a little water to drink. but it was so nice cause it really tasted like food. Of course i supplemented with the ensure protein drinks but I got so sick of those that once my stock ran out I didn't go back for more. I hope this helps. If your out and about and need a snack go by chic fil a and get the large chicken soup, crush up the saltines they provide and enjoy it. 

 

Above all else just keep eating anything that doesn't taste bad, it will get better.

 

jake...

the_wife

jakesaround said:

Some things to try...

Hey King,

i am about 3 months out from my tonsil cancer treatment and my taste has recently rebounded pretty well. My advice is start with soups, I really liked the chicken based soups. You know chicken noodle, chicken and rice, etc. I tried to stay away from the tomato based stuff because for some reason that stuff just tasted rancid. Also I fell in love with over medium eggs on toast then I would cut the runny egg up and let it soak in with the toast and a little water to drink. but it was so nice cause it really tasted like food. Of course i supplemented with the ensure protein drinks but I got so sick of those that once my stock ran out I didn't go back for more. I hope this helps. If your out and about and need a snack go by chic fil a and get the large chicken soup, crush up the saltines they provide and enjoy it. 

 

Above all else just keep eating anything that doesn't taste bad, it will get better.

 

jake...

Kent, I like that image of

Kent, I like that image of the wagon train cook! I'm that cook now, I guess. At least that's how I feel, lol! Hey, you gotta have some comic relief! But I'll use the wagon train idea the next time my hubby expects something to taste like real food. 

Jake, wow you sound like you are doing really well at only 3 months out. That's awesome! My hubby had severe mucositis, thrush, and still has a nasty coating looking on his tongue 4 months later. I'm not sure if that's a factor, but he is really struggling with taste and appetite.

Tragic-king, I'm not sure if this will help you, but recently I've been experimenting with different flavors using things like maple sryup, peanut or nut butters, herbs, and sea salt. Just a little dab will do ya. Not sure if you have a caregiver doing the cooking. I guess I like to try different things, but like Kent said, keep up with your nutrition - especially protein intake. My hubby hates Ensure so whenever possible I make my own protein smoothies and use his Nurtren as a base and supplement it with Carnation Instant Breakfast or Greek Yogurt. For flavoring I add either sherbert, chocolate, caramel, or strawberry sryrup. I mix in protein powder to his smoothies and his oatmeal, and try to add calories to his meals any way I can so he maintains his weight. I also use a lot of flaxseed meal. Cocoa is good to add to smoothies and so are ground nuts (use your coffee grinder for this). Prune juice for keepin' you regular. I feel like I could write a book after all the time spent in the kitchen the last 4 months. In reality it's all the same to the hubs - not good. But I'm hopeful we're all gonna get better (eventually). In this case, patience really is a virtue.