Loss of taste from radiation

Donne_Ann

Hi my name is Donne.
My mom was diagnosed with Squamous Cell Carcinoma of the Tonsil (stage II) in mid September. She had her tonsil removed and had a feeding tube put in before her treatments began. She just started radiation/chemo November 9 and she is doing great she has really high spirits and enjoying her life and calls her cancer a little speed bump. The only thing she's a hard time with is the fact that she cant taste anything... She has loss all sense of taste and she's finding it easy to just use her feeding tube. I was wondering if anyone could give me some advice on what foods would be good for her to try.
Thank you!

Hondo

Hi Donne
Glad to have you here with us on CSN
I did not use the feeding tube so someone else will need to give you advice there. I am glad to hear your Mother has a strong Spirit and can enjoy life even through cancer. One of the things that help the most is to keep a good attitude and remember that there is life after cancer. God bless

cjamesfu

Hondo said:

Hi Donne
Glad to have you here with us on CSN
I did not use the feeding tube so someone else will need to give you advice there. I am glad to hear your Mother has a strong Spirit and can enjoy life even through cancer. One of the things that help the most is to keep a good attitude and remember that there is life after cancer. God bless

Hi Donne
I found the mung bean puree to be really helpful in my own experience. It helps relieve the residual energy from radiation out of the body. When the heat is released, the body recovers quicker. To use it, you may add half a cup of puree in the meal or mix it in milk. Good luck.

LucyVance

It's Critical Mom Keep Swallowing :-)
Hi there Donne - I'm so glad to hear your mom is in such good spirits. I hope it's continuing and that you enjoyed a happy thanksgiving together. My suggestion would be that you encourage your mom to keep swallowing as much as possible. Unfortunately, if she doesn't swallow those muscles deteriorate and it becomes difficult to get them working properly again. I know we didn't imagine this would be the case but it was soooooo hard to start swallowing again I wouldn't want that to happen to your mom. So,at the very least please try to encourage to continue swallowing water every day at least a few times. Wishing you both all the best. Lucy

Scambuster

Loss of Taste
HI Donna,

I went through a similar scenario and am in my 8th week post treatment. I had 7 weeks of Radiation (2x a day - IMRT) and Erbitux (Target Chemo) once a week.

The going got rough in weeks 3-5 so you might need to prepare for that. I had a tube put in about the 2nd week as I started having trouble eating and started losing too much weight. As the previous posters said, try to keep swallowing and eating whatever is possible. I found I could eat those small sachets of baby cereal where you add boiling water to the dry mix. You actual drink it more than eat it. They are also nutritious and give good calories. the taste was always OK.

For the rest, I found textures unpleasant and taste of everything changed.

The doctors always recommend 'Ice cream and Jello' about which I have mixed views as any processed sugars are not great for Cancer (Cancer loves sugar) but if they provide calories then you weigh up your options if you are losing too much weight. I assume if she has a tube and can feed sufficiently then weight loss should not be a big issue.

Unfortunately the taste issue remains a problems and recovery of taste varies among patients but most people regain taste but her taste may not be the same as P.C. It also depends where the radiation hits and if your tastes buds and salivary glands are hit then that can have a lasting impact.

I feel I am slowly recovering taste now but struggle with the dry mouth due to damage done to the Salivary glands. Soups are generally good and always accompany a mix of steamed or stir fried veges, soft tofu and maybe steamed fish on my dinner table. I can taste all the foods but it is different than pre-treatment.

One thing I can recommend is to get hold of a tub of Glutamine powder. This is an amino acid and primary food source that can help restore the mucosa (All the internal tissues from your mouth to your bum). THe effect will mainly be to assist recovery of mouth and throat tissue that will get hammered during RT. I will post this shortly (When I get time) as I found it really had a big effect on my recovery. I suggest you google it and you will see all the positive information on Glutamine. It is tasteless and can be mixed with water or any other fluid.

I know I haven't focused too much on what will taste good for your mum but I hope some of this info is of help.

All the best and I hope your mum continues with high and fighting spirits.

Regds
Craig the Scambuster

Landranger25

Scambuster said:

Loss of Taste
HI Donna,

I went through a similar scenario and am in my 8th week post treatment. I had 7 weeks of Radiation (2x a day - IMRT) and Erbitux (Target Chemo) once a week.

The going got rough in weeks 3-5 so you might need to prepare for that. I had a tube put in about the 2nd week as I started having trouble eating and started losing too much weight. As the previous posters said, try to keep swallowing and eating whatever is possible. I found I could eat those small sachets of baby cereal where you add boiling water to the dry mix. You actual drink it more than eat it. They are also nutritious and give good calories. the taste was always OK.

For the rest, I found textures unpleasant and taste of everything changed.

The doctors always recommend 'Ice cream and Jello' about which I have mixed views as any processed sugars are not great for Cancer (Cancer loves sugar) but if they provide calories then you weigh up your options if you are losing too much weight. I assume if she has a tube and can feed sufficiently then weight loss should not be a big issue.

Unfortunately the taste issue remains a problems and recovery of taste varies among patients but most people regain taste but her taste may not be the same as P.C. It also depends where the radiation hits and if your tastes buds and salivary glands are hit then that can have a lasting impact.

I feel I am slowly recovering taste now but struggle with the dry mouth due to damage done to the Salivary glands. Soups are generally good and always accompany a mix of steamed or stir fried veges, soft tofu and maybe steamed fish on my dinner table. I can taste all the foods but it is different than pre-treatment.

One thing I can recommend is to get hold of a tub of Glutamine powder. This is an amino acid and primary food source that can help restore the mucosa (All the internal tissues from your mouth to your bum). THe effect will mainly be to assist recovery of mouth and throat tissue that will get hammered during RT. I will post this shortly (When I get time) as I found it really had a big effect on my recovery. I suggest you google it and you will see all the positive information on Glutamine. It is tasteless and can be mixed with water or any other fluid.

I know I haven't focused too much on what will taste good for your mum but I hope some of this info is of help.

All the best and I hope your mum continues with high and fighting spirits.

Regds
Craig the Scambuster

Keep Swallowing!
Hi Donna, listen to LucyVance! The one thing my oncologist said in the beginning is "Don't lose your swallow". I too had the PEG and I used it for getting the nutrition in but I also continued to always have some water or gatorade to sip on during the radiation and chemo. Even if it is only a sip at a time, encourage your Mom to keep using those "swallow" muscles. I truly believe that my recovery the 2 weeks after radiation ended were easier and I started eating sooner because of this one thing. I was able to take in soup which compared to what I was getting through the PEG made me feel much better. Glad she is doing so well and hope she can continue and keep that positive attitude. Good luck.

Mike