Hi everyone,
Just a quick update on my mother. 71yrs with SCC on right lateral tongue. Had surgery 1/2 tongue removed with clean margins and 34 IMRT treatments. She finished her last IMRT treatment on July 3rd. She had some issues with mouth/tongue pain a few days after treatment ended and was taking percocet for about a week and the pain is much better. She continues to drink boost and make protien shakes.
Eating only soft foods.
Her biggest problem is that she has no taste for food at all. This makes it very hard for her to eat because she has no appetite. She has to force herself to eat.
Just wondering how long it will take for her taste to start coming back????? And hopefully it will.
Any information would be greatly appreciated.
She follows up with her RO in August. I am going to ask him about her having the Pet scan.
Any idea on how long they wait to do Pet scan following radiation????

Michelle

Michelle,
It sounds to me like she is doing exceptionally well. I started regaining my sense of taste after a month or so and salty flavor was the first with sweets being the last. It took a good year for full recovery of the taste buds. The salivary function took longer - about 18 months.

I experimented with different flavors and strangely enough, I could still taste coffee so I drank a lot of espresso flavored Carnation Instant Breakfact and coffee flavored Hagen Daz milkshakes.

Most of us never had a post Tx PET scan but if she does they should allow several months for the tissues to heal or there will be a lot of false positives.

Michelle,

My experience with taste was fairly similar to Gary's -- never completely lost the taste for coffee flavor (but for a long time I couldn't tell the difference between good coffee and bad!). Also, I had to keep forcing myself to eat while the various taste buds slowly returned over many months. The good news is that I eventually did get all of the taste sensations back so that I could eat for enjoyment, not just for sustenance.

I agree with Gary that it sounds like your mom is doing quite well overall.

Cathy

Re: taste- I don't know as mine hasn't returned yet. Professional opinions range from one month (my RO) to one year (my ENT). I think it's safe to say they don't know either. My goal is to get enough 'nutrition' every day to make it to the next day, etc. Eventually the day will come when I'm able to eat 'normally' again. In the meantime, I'm slowly losing weight.

About 3 months after the end of treatment seems to be the consensus for the PETscan.

Michelle, as soon as my mouth healed enough to eat, I consumed chicken noodle soup by the gallon. I could taste the salt, and the noodles went down easily. The taste for sweet came back gradually. I would eat one bite of pie, for instance, that tasted wonderful, and the next bite would taste like cardboard. By 8 weeks out I had all my taste back. If this experience taught me anything, it was patience. My hat is off to your mom, who is doing remarkably well!

Thanks everyone for your responses. You are all so right. My mom is really doing exceptionally well for her age, 71. I really do think that the IMRT did make a big difference in her side effects. And the fact that she did not have any chemo. I am so thankful for that.
She is one strong person, I have to say. I am so proud of her and the strength she has shown.
I still do not know how much radiation she actually had. I am going to go with her to see her RO in August and find out more from him.
I never did understand the dosing of radiation.


Gary I see that you also had IMRT and chemo.
What was your experience like with the IMRT??
Thanks again everyone.
Michelle

Michelle,
Well the chemo I had added lots of wrinkles to the side effects. Mouth sores, mucositus, etc. The chemo I had was also a radiation "enhancer" so I think it would be comparing apples and oranges.

I would venture that she had 66-68 cGy of radiation since they never exceed 1.8 - 2 cGy/day. They have to give it in "fractional" doses to allow the healthy tissue time to regenerate.

In the end though, 3 1/2 years+ out from Tx, I'm doing pretty good. Taste buds normal, salivary very good, no swallowing issues, trimus, etc., some minor things like neck spasms and some mild nueropathy but quite manageable and not even a daily thing - just occasional.

I would say your mom did really well for ANY age.