Side Effects from radiation

mjc2295

Hi all, I'm excited to say that I just became a member of CSN today. I have read some of your stories and know I will learn alot from all your experiences because I do have questions that only you guys can answer. First, briefly about me. I was diagnosed with Squamous cell cancer on the floor of my mouth in Sept of 2013 and had surgery on Nov 12, 2013.  i completed 7 weeks of radiation and Chemo on the 28th of March this year. A Pet scan 3 weeks ago showed that I am now cancer free.  that was fantastic news and I thank god for that!!!!  My question is side effects.  The dry mouth is intermittent and usually the most bothersome at night. The loss of taste is my biggest concern.  It has gotten better but barely. I have read some of the horror stories of people never getting their taste buds back and then I have read about people who are back to "normal" within a year.  My Oncologist says I will get 90% back i

 

 

mjc2295

I meant to add, I would love

I meant to add, I would love to hear your experiences.

MarineE5

Various time frames

MJC,

As you probably know by now, each of us recovers at a different pace then the next person. My taste started to wake up roughly 4-5 weeks after my treatments of Radiation. The down side of it was that at the one year mark, I could not taste many things, so I looked and hoped for better results the further out I got. It did happen, an improvement at the 2 year mark, but not total, still couldn't taste chocolate ice cream, my favorite and other items.

It was about year 3 that I think I tasted chocolate once again, what I am getting at basically is this, don't set a time line, we are now changed by our treatments, the DNA has been hit and it will take time to rebuild. Oh, by the way, I have been making up for the loss of not eating chocolate ice cream for those 3 years...

My Best to You and Everyone Here.

CivilMatt

not 90% yet

mjc2295,

Welcome to the H&N forum, will that be one or two for dinner tonight?

Congratulations on making it through in one piece.

At 2y3m post my taste is lacking, but still improving.   I can eat most anything, while I strive to find new favorites.  I go through one, two or three glasses of water at each meal and I eat a little    slower, but taken in whole I am pretty good   and happy with my status.

Eat right,

Matt

phrannie51

It's a slow process for some of us.....

At almost 2 years out, I can say it's WAAAYYY better than at 3 or 6 or 9 months out.......I can taste some foods pretty good, and many I can taste only for the first three or four bites.  But it's more than liveable......I still sip water throughout a meal, to wet things up a bit....and have to say, if I want to enjoy a meal as if all was normal, I just hit for the hearty homemade soups.  Dry mouth seems to get to me when I sleep, or when I'm talking a lot.....I just either have a bottle of water, or ice tea nearby to keep everything wet.

Don't know if mine will get better, but know it's not as bad as it used to be, and at the same time I'm getting used to it.  Hang in there, it takes a while.

p

cureitall66

Water on hand....

We've found we have to keep water on hand at all times.  My loved one says night is the worst, so he keeps a big cup of water by his bedside.  We never leave home without our water.  It's carried to work also.  He is now 8 months  out from treatment and taste buds are about 90%, still has a few different foods that just don't taste the same.  His sweet tooth has come back though! Be patient, most will come back.  The dry mouth may be a recurring thing.  Carrying water around is much better than carrying the beast around any day!

God Bless,

~C

debbiejeanne

mjc, just want to say welcome

mjc, just want to say welcome and i'm glad you're here but sorry for the reason.  i had rads 10/09 then surgery 2/28/12.  my taste buds are almost back 100%.  still can't eat some things b/c they have a bad taste, like choc candy bars.  can't eat them, but i can eat a choc brownie.  go figure.  anyway, be patient, it can take a few years for it to be fully back.

dj

hwt

debbiejeanne said:

mjc, just want to say welcome

mjc, just want to say welcome and i'm glad you're here but sorry for the reason.  i had rads 10/09 then surgery 2/28/12.  my taste buds are almost back 100%.  still can't eat some things b/c they have a bad taste, like choc candy bars.  can't eat them, but i can eat a choc brownie.  go figure.  anyway, be patient, it can take a few years for it to be fully back.

dj

Welcome

My surgery (jaw) was January 2012, finished rads/cisplatin May 2012 then had targeted rads 08/2013, erbitux/taxol 01/2014 and more targeted rads 04/2014. Used to carry magic mouthwash everywhere but no longer. In just the last 2 months I have added Pepsi and a bit of shrimp sauce to my list on "can-do" items. Never really lost my taste just had lots of things that I had trouble tolerating. Basically, 2 1/2 years post surgery, still making changes for the better in that area.

Try a bottle of Stoppers 4 bedside, it tends to help dry mouth.

thennies61

Hi and welcome.I had 35 rads

Hi and welcome.I had 35 rads and have to say didn't have some of things other people have had.I did have taste but not much.Mainly used my peg tube.I did had radiation burns around my chin and neck which wasn't bad as I used the lotion that everyone said worked.But did start to peel like and orange.My thing was that my mouth wasn't dry just the oppsite.It keep filling up with slivia and was kind of thick.But now that is over have started to eat alot more mouth is still filling up but more as I talk.Doctor said it should settle down but will most likely always have some.My energy level has gotten better but found that my shoulders and arms become weak when doing alot lifting.Forgot that they split me from ear to ear and took some nymph nodes so that will time to get back plus the lose of weight isn't helping either.But all in all feeling better.

Guzzle

thennies61 said:

Hi and welcome.I had 35 rads

Hi and welcome.I had 35 rads and have to say didn't have some of things other people have had.I did have taste but not much.Mainly used my peg tube.I did had radiation burns around my chin and neck which wasn't bad as I used the lotion that everyone said worked.But did start to peel like and orange.My thing was that my mouth wasn't dry just the oppsite.It keep filling up with slivia and was kind of thick.But now that is over have started to eat alot more mouth is still filling up but more as I talk.Doctor said it should settle down but will most likely always have some.My energy level has gotten better but found that my shoulders and arms become weak when doing alot lifting.Forgot that they split me from ear to ear and took some nymph nodes so that will time to get back plus the lose of weight isn't helping either.But all in all feeling better.

Beer

Two weeks out. Getting better but spices difficult. Just managed first beer (one!) G

Jeff2159

Guzzle said:

Beer

Two weeks out. Getting better but spices difficult. Just managed first beer (one!) G

Beer

Lucky for you guzzle. After 1 1/2 years, alcohol still burns my mouth, even wine and baileys irish cream. Carbonated beverages also burn my mouth so its two strikes for me against beer. My taste buds have been off the chart as flavors are magnified for me at present. Have trouble with orange juice, too acidic as well as tomato based sauces

yensid683

It takes time...

As previously stated, everyone is different and it takes time.  I will soon be two full years out from my last rad and while things are better than they were in the first few months post-rads, they're not back all the way and may never be, but I am able to enjoy eating again - to the point hat I have to watch what I eat again (yay!)

I too had an extreme dry mouth issue and yes, night time was the worst.  at one time Phrannie noted that she'd wake up with a mouth as dry as sheet rock, I did too, but over time it came back and I learned how to breathe only through my nose.  A good trick as I'd had an episode that had me pass out and land face first on the floor post treatment, and broke my nose.  Breathe-right strips help and I may need a couple of sips of water overnight.

Biotene makes mouthwashes and sprays that will help keep oral tissues moist.  Most drug stores carry it. 

Taste will come back, but the lack of saliva or the diminished saliva like I have makes some tastes impossible.  I loved the candy Lemonheads, but with the reduced spit, the sour tastes are just too much to take.

Give it time, it will get better, but it comes at a glacial pace

 

One last thing to consider.  I am as happy as can be, because I am ALIVE!  Who cares that lemonheads are too sour to eat, I'm Alive!

mjc2295

Thank you all for responding

Thank you all for responding and sharing your stories.  I think yensid said it best. we are ALIVE!!! As much as we would love things to return to some normalcy, atleast we are here to complain about it .  From what I've read from most of you, it juse takes time.  that gives me hope! and I thank you all for your words of encouragement

donfoo

Welcome to CSN but...

My Oncologist says I will get 90% back

Welcome to CSN. Hang around as there is always something to contribute or learn. You will surely gain more taste back over time but your doctor sees the future or overly enthusiastic. Unfortunately, nobody can predict where you land at your "new normal". This goes with all side effects, not just these shorter term ones like dry mouth and taste but also possible long term jawbone conditions like ORN and thyroid.

Keep doing your best to enjoy everyday and try not to dwell on future outcomes; doing so only makes it harder to live today to its fullest and most enjoyment. Best wishes, don