Temodar And Taste Buds

Hi everyone.  My mom, dx gbm 4 in May 2007, is back on the Temodar and she is having a terrible time with a "metallic" taste in her mouth with everything she tries to eat.  Does anyone have any suggestions on what would help her or what foods would be best for her to eat????  I would appreciate any advice I could get.

Thanks and God Bless.

On 4/8/2008 Goofy10 wrote:

Hi everyone.  My mom, dx gbm 4 in May 2007, is back on the Temodar and she is having a terrible time with a "metallic" taste in her mouth with everything she tries to eat.  Does anyone have any suggestions on what would help her or what foods would be best for her to eat????  I would appreciate any advice I could get.

 

Thanks and God Bless.

My hs experienced taste differences and not being able to taste the flavor of most foods. Doesn't like dry foods ie... bread or anything breaded. He has always been a spicy eater the hotter the better. Now he can't tolerate nor does he have a taste for anything hot or spicy.

While he hasn't experieced nausea or vomiting he has been loosing his appetite with every Temamdar dose (he has had 3 rounds)

Things that he says taste good, tuna and chicken salad,applesauce, berries, most fruits,cream based soups, scrambled eggs,yogurt, ice cream. It does take time to get the taste buds working again, but when you concider that their heads are being radiated it's not surprising that taste would be a factor for them. He has started to get some taste back for some foods,but just not a big appetite yet. One thing I ask him everyday is "what do you have a taste for"? If he is craving something he gets it : ) whether it's a fatty cheesburger from Burger Kiing or yogurt ; )

This all just takes time. The effects of radiaition can stay with you for months. Hang in there!

My best to you and your mom.

Yes. Mine are off quite a bit. The metallic taste is something I experience during and a few days after an M.R.I. as well as during the Temador treatment. Not to worry.

All my best, Chris 

Oh yeah....

My wife used to tell me that sodas tasted horrible to her after she started the temodar. 

On 4/8/2008 Goofy10 wrote:

Hi everyone.  My mom, dx gbm 4 in May 2007, is back on the Temodar and she is having a terrible time with a "metallic" taste in her mouth with everything she tries to eat.  Does anyone have any suggestions on what would help her or what foods would be best for her to eat????  I would appreciate any advice I could get.

 

Thanks and God Bless.

Hi All I was on Temodar (although we call it Temodal over here) for 8 months last year and in the beginning I had alot of trouble with the taste buds and I think I lived on Turkish delight chocolates, which cant  be a bad thing can it?  I had it explained to me and I shall try and remember the best I can.

 I should mention that what distinguishes Temodal and makes it effective locally with fewer side effects is not that the anti-tumour agent itself is especially novel, but that:
[1] the drug is readily absorbed in the acid environment of the stomach,
[2] readily crosses the blood-brain barrier and
[3] does not change into/metabolise into the active anti-tumour chemical until it finds itself in the alkaline environment of the tumour (the tumour is alkaline because it produces/releases massive amounts of
lactic acid).

In this situation, you need to be taking a capsule (or bolt it down in
jam, etc) to get the drug to the stomach unaffected by the alkaline
environment of the mouth. You do not want it to begin to be active in
the digestive tract and cause wider side effects and have less impact on
the tumour.  If you are having trouble swallowing which I was when I started due to getting thrush in my mouth and throat I of course could not bolt it down as it should be so I saw it that it was getting into my taste buds in small doses before I was able to bolt it down.  I hope this makes some sort of sense. 

cheers

Jayne

On 4/10/2008 sheppey wrote:

 

On 4/8/2008 Goofy10 wrote:

Hi everyone.  My mom, dx gbm 4 in May 2007, is back on the Temodar and she is having a terrible time with a "metallic" taste in her mouth with everything she tries to eat.  Does anyone have any suggestions on what would help her or what foods would be best for her to eat????  I would appreciate any advice I could get.

 

Thanks and God Bless.

Hi All I was on Temodar (although we call it Temodal over here) for 8 months last year and in the beginning I had alot of trouble with the taste buds and I think I lived on Turkish delight chocolates, which cant  be a bad thing can it?  I had it explained to me and I shall try and remember the best I can.

 I should mention that what distinguishes Temodal and makes it effective locally with fewer side effects is not that the anti-tumour agent itself is especially novel, but that:
[1] the drug is readily absorbed in the acid environment of the stomach,
[2] readily crosses the blood-brain barrier and
[3] does not change into/metabolise into the active anti-tumour chemical until it finds itself in the alkaline environment of the tumour (the tumour is alkaline because it produces/releases massive amounts of
lactic acid).

In this situation, you need to be taking a capsule (or bolt it down in
jam, etc) to get the drug to the stomach unaffected by the alkaline
environment of the mouth. You do not want it to begin to be active in
the digestive tract and cause wider side effects and have less impact on
the tumour.  If you are having trouble swallowing which I was when I started due to getting thrush in my mouth and throat I of course could not bolt it down as it should be so I saw it that it was getting into my taste buds in small doses before I was able to bolt it down.  I hope this makes some sort of sense. 

cheers

Jayne

 

 

Jayne, very interesting theory .I am on a cycle presently and will try this. Could be why we're told to take it on an empty stomach and not eat for several hours afterwards? Makes sense to me.

How's things on the other side of the pond? 

Thank you,      Chris 

Peppermint Patties help.

There is a special tooth paste sold at speciality drug stores that also help.

HI;  My name is Jim Robinson, and I was diagnosed with GBM grade 4 on February 27th, 2004 and had surgery on March 1st.  My surgeon said I had three to six months to live.  As you can read from todays date, I am just past my fourth anniversary since my surgery. I had 33 rounds of radiation and 42 rounds of chemo the first time.  I was taking Temodar, and very vividly remember the taste in my mouth.  I brushed my teeth 3-4 times a day, and regularly gargled with a mouthwash.  It would help for a little while and then the taste would come back.  As I remember, it seemed to have dulled my taste buds, and things tasted different than what I remembered them tasting.  I got to looking back in my notes, and now I remember also was taking Dilantin, Zolofr, Celebrex, Zofran, Xanax, and Protonix at the same time.  It took awile to get past all of the meds, and just keep the ones that I realy needed.  I only one  that I take now is the Xanax which I take before going into crowded areas.  My tastes came back when I got off of all of the meds.  I don't know which combination tasted the worst, but I did know the difference when I started getting off  of the meds.  The one thing that did seem to help was to use baking soda with the toothpaste when I brushed my teeth and ti gargle.

I was very blessed.

 Jim Robinson

I didn't have that drug but did have radiation.  October 2004 I had radiation from the tip of my nose to the middle of my chest.  Everyday except weekends.  It trashed my mouth.  Skin was hanging down in my mouth.  I had a hard time swallowing.  I had no taste for anything that went on for months.  It was so bad that I went into a depression and lost 65 lbs.  I still don't taste things the way I remember.  My mouth is extremely sensitive.  Regular toothpaste and mouthwash are too strong.  They made my mouth burn.  I use bio-tiene toothpaste and Oasis mouthwash.  I have an extremely dry mouth and prone to cavities.  My mouth always tastes awful, so I assume I must have bad breath.  I use Oasis  spray mouth moisturizer and it helps the dryness and tastes good.  I can't eat hardly anything.  Right now I can't have anything the least bit dry because I can't swallow it.  I am finished taking antibiotics and water pills that made it worse.  I have thrush right now too.  I had one of my salivary glands removed when they took it with the tumor out.  I take 3 Civimeline a day to help make saliva.  At times like this it doesn't seem to be working.  Sipping water only relieves it for the few seconds that the water is in my mouth.  I do suck on sugar free hard candy.  That helps with the horrible taste.  I can't have anything sugary or acidy or spicy.  While I was trying to get my mouth to heal after the radiation, I lived on oatmeal.  Right now I live on Instant Breakfast, Yogurt, scrambled eggs, hot cereal, puddings, cottage cheese and canned fruit that has been rinsed.  My tongue has been so sore that I have painted it with Kanka.  It burned for a while but then my tongue felt numb.  I use Nystatin (liquid) to help with the thrush and Isolep to help with the pain.  After all this time I was hoping things would get somewhat better.  The saliva problem was getting better until the antibiotics and water pills.  Well, I am not taking them now so I am wondering why my mouth doesn't get back to the way it was?  I sleep with a CPAP machine which keeps my mouth closed and I breathe through my nose (I have sleep apnea).  I don't wake up with the parched mouth anymore.  I avoid talking or opening my mouth because it dries out so fast.  If I am talking, it gets really dry really fast and I sound like someone (so my husband says) who can't hear or someone who is retarded.  I had 2 cancers.  One is in remission, the other is incurable.  I've had chemo and radiation 3 times.  My immune system is totaled.  I haven't been able to get my red blood cells and platelets to come up to anywhere near normal since I finished radiation in November 2007.  Therefore I don't qualify for any more treatments of any kind.  I will have scans in July to see how much the cancer has progressed.  The last chemo, radiation and rituxan did not get rid of all the cancer.  The other thing the radiation did was freeze my jaws so I could only open my mouth a little bit and could not move my jaw from side to side or front to back.  All in all I would say the radiation did the most damage that has had bad effects on my quality of life.

Kitty