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Sensitive to Cold Drinks

robswife87's picture
robswife87
Posts: 180
Joined: Mar 2013

Hi all,

Rob just finished Rad #10 and he has lost all taste. A little fast we thought but everyone is different. He is complaining of a sore spot on side of tongue although radiation is tonsil, I am sure this is normal also

Is sensitivity to cold drinks a problem? He has never really been sensitive to hot of cold foods and now says the drinks i make are very cold and alomost hurt.

He doesn't want to eat solid food most of the time as the taste is bad, not that it is hard to chew or swallow. All this seems so early in treatment. 

He does not have a feeding tube and the hospital prefers not to give him one. I really don't know what I am gonna do to keep him eating and swallowing when it is this hard now.

Sandy

CivilMatt's picture
CivilMatt
Posts: 3014
Joined: May 2012

 

Sandy,

 

As well meaning as everyone here is and no matter how hard my family tried, I hated the texture, feel, taste , no taste so much I happily drank smoothies for 7 months.

 

I don’t care where or how he gets his nourishment (calories) he just has to find an avenue which works and exploit it.

 

My taste buds went south during week 3, so at 10 days he is in the game.

 

Post treatment I was constantly sampling foods, I wanted to know the instant my taste buds came back on-line.

 

Today I no longer here the whir of the blender, preferring to peer into the fridge  looking for something to eat.  In 3 hours I  will be dropping in at Ruby Tuesday for either a steak of a hamburger (I haven’t decided yet).

 

Cold drinks can be rough, luke  warm (body temperature) food and drink can be good.

 

Keep drinking water and swallowing.

 

Matt

 

debbiejeanne's picture
debbiejeanne
Posts: 2514
Joined: Jan 2010

sandy, that does seem 2 b early in treatment but as u said everyone is different.  he will have 2 keep eating and drinking tho 2 keep his strength up.  if he doesn't the hospital will have 2 consider the tube.  remind rob of that and maybe it will help him eat.  i don't know about the sensitivy to cold drinks.  wishing u the best as u continue down this road.

God bless,

dj

hwt's picture
hwt
Posts: 1970
Joined: Jun 2012

I drank smoothies and shakes for awhile but then went to room temperature water. Am just about 1 year post tx. If I order water at a resturant (no ice) and it comes cold I can just now tolerate it. Haven't tried a smoothie since tx. but notice if I get a shake, the 1st sip or two are difficult and then the rest goes down easy. I've never had a problem with cold milk. Took 11 months but started drinking an occasional Sprite...weird sensation. I would say I was atleast 10 months of having most everything at room temp. before doing hot and cold.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I was not able to taste at about 10treatments too. You are right, we are all different.
As for the sensitive teeth, yes rads will cause that. His job is to make sure he is doing his trays and flouride. Empty trays during treatment and flouride at night.
As for the sore tongue, I had sores all over my mouth at one time or another. Make sure hubby doesn't have thrush. Thrush is the culprit for a lot of the mouth pain we suffer during treatment.
Now onto the PEG, my advice here would be to not be closed off to the idea. Funny I wanted one from the get go because I'm thin to begin with but I also have one of those Dr's who wants his patients to try with out one for as long as they can. Well when I lost 11 pounds in one week he finally listened to me. I just couldn't eat! It tasted horrible, hurt like crazy and I was so sick to my stomach that the thought of eating even bothered me.
If it comes down to him being undernourished and weak, he really must reconsider. The more calories he can get in, the better and stronger he will feel. It also helped with hydration and being able to take my meds without swallowing them.....huge plus!
Just have him keep an open mind about it. It's not the end of the world, it's quick and you don't get any extra points at the end of all of this for not having had one.
Good luck and make sure to check for thrush.
Billie

LaughingGirl
Posts: 6
Joined: Feb 2013

Hi Sandy -

I finished my 35 rads and 3 Cisplatin a week ago.  I too became very sensitive to cold, although I was lucky enough to go about three weeks before I lost it. 

I am also tonsil cancer, and have had a sore on the right side of my tongue since the first or second week.  My Dr is of the get the PEG before you start school, so I do have a PEG.  However, I am pretty stubborn and was determined to not use it.  (Have used in about 10 times so far, though). 

During my treatment, I seemed to go through a series of waves of different foods sounding good (they usually did not taste like they should or anything for that matter).  For a while, it was eggs (which I normally do not really care for) - I was eating three scrambled eggs with cheese and chocolate milk (full fat - milk is another food I don't like, but can tolerate chocolate) - there were days I ate eggs for all three meals I know.  Then, I hit the point where one day I thought I cannot possibly eat another scrambled egg and moved on to egg salad on a flour tortilla.  I also progressed through a macoroni and cheese (stouffers frozen) and rice pudding phase.  Grilled cheese did it for me for a few days as well.....

Yesterday, I ventured out to the grocery store and wandered around to look for foods I thought sounded good (knowing full well that they wouldn't likely taste like they should) and that I thought I could eat.  I returned home with by far the strangest assortment of foods - lunch yesterday was mini crab cakes.  Breakfast today was shrimp and grits and hash browns.  Lunch today was pork and leak chinese dumplings.  Planning to try a gyro for dinner tonight.......not sure if it will be too spicy or not - but won't know until I try it.

I have also been using instant breakfast and Ensure to round out my daily calorie count (although in my experience milk products burn my sore mouth equally as much as water does). 

Forgive me for rambling on - my point is to validate the hot/cold sensitivity and encourage Rob to keep trying anything and everything.  There were several times that I couldn't think of absolutetly anything that sounded good and that's usually when I defaulted to instant breakfast or Ensure, as I could get those down "relatively" quickly and mark off those calories for the day [I was given a goal of 1800-2000 per day, 60 g protein]. 

Best of luck - keepiing you both in my prayers!

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

I don't think anyone on here has ever mentioned this , but my Onc. told me in the very begining " nothing hot or cold , everything room temperture 'and you will have less pain". So I never put my water or Ensure in the refridgerator. I lost saliva and taste at 2 weeks and "they said oh it's to early for you to have side effects ". Well it sure wasn't !!! Best wishes & hoping he can get thru without the PEG , if that's what he wants to do. I didn't have one and I lost about 60 pounds during tx and 15 more so far but I was obese and had it to lose , but I sure lost a lot of muscle ! I'm starting to get a little taste back but still have a very dry mouth .I'm 6 months out of Rads and am trying to not lose anymore .

Peggy

phrannie51's picture
phrannie51
Posts: 3787
Joined: Mar 2012

after the first week, so Rob isn't too early in the game for that to happen.  I remember the day water was good in the morning, and suddenly in the afternoon it had become like ocean water...yuck.  There's the universal question.....what exactly does "not taste good" mean?  Does it mean food tastes like it came out of the bottom of a pit, or is that how some folks describe tasteless?  It's so so relative.  This is where Ensure Plus and Boost came in for me.  Longtermsurvior pointed out one day that a can of Ensure can be done in 8 to 20 swallows, depending on where a person is in treatment.  That helped me get it down....I was an 11 to 13-sip sipper....getting it down ASAP.....food in, dinner done!!  If his mouth pain grows too intense, it's time to ask for Magic Mouthwash....taken right before he pours down his nutrician. 

Also.....everything I took in was room temp....cold and hot were just too much.  I used half 'n' half for smoothies instead of milk....but I also drank a LOT of plain old 4% milk., like 1/2 gallon a day...let it warm up to room temp....a good way to get nutritian and hydration in one swoop....also, milk was something I could taste....for me blander things retained some of their flavor.

p

HelenBack
Posts: 62
Joined: Jan 2013

My husband has lost much of his taste after 13 treatments and has some mucositis sores at the back of his throat. Today is the first day that he used the miracle mouthwash and it helped him to get a high calorie smoothie down. I think that's the plan from here on out. Get food ready, swish, wait a few minutes and then eat as quickly as possible before it wears off.

I thought it was early too, as I was thinking it would all start at the end of the third week. I keep on top of him about rinsing with the baking soda, reminding him that it is the only tool that we have to keep mucositis at bay. He does take 1 Tb of glutamine powder in water 3 times a day which we were told can help. I cant say if it's helping or not.

He's taking a variety of probiotics to try and keep the thrush away. I sure hope it works.

He hasn't said anything about cold bothering him but I have heard others say that. 

Good Luck,

Helen

 

phrannie51's picture
phrannie51
Posts: 3787
Joined: Mar 2012

mostly I think because I used Mugard.....however, the Mugard couldn't keep up with them when I was getting 5FU.....I used the L-glutamine mixed in water as my swallow juice....it was the only thing I could put in my mouth that didn't sting, and that was "swallowable"....I honestly don't know if it helps mouth sores or not either, but it did come in handly for keeping me swallowing when nothing else could go in orally.

p

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