Previous Thread
Next Thread
Print Thread
#58677 07-15-2006 04:06 PM
Joined: Feb 2006
Posts: 58
mcgee Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Feb 2006
Posts: 58
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

#58678 07-15-2006 11:17 PM
Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
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.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#58679 07-16-2006 12:39 AM
Joined: Apr 2004
Posts: 837
"Above & Beyond" Member (300+ posts)
Offline
"Above & Beyond" Member (300+ posts)

Joined: Apr 2004
Posts: 837
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


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#58680 07-16-2006 05:31 AM
Joined: May 2006
Posts: 137
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: May 2006
Posts: 137
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.


dx 2/13/06. modified radical neck dissection 3/9/06 multiple biopsies of upper airway and direct laryngoscopy. 1 of 47 lymph nodes positive for metastatic undifferentiated carcinoma (lymphoepithelioma). Unknown primary. Finished radiation 5/24/06.
#58681 07-16-2006 08:58 AM
Joined: Mar 2002
Posts: 1,140
Likes: 1
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Mar 2002
Posts: 1,140
Likes: 1
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!

#58682 07-19-2006 12:48 PM
Joined: Feb 2006
Posts: 58
mcgee Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Feb 2006
Posts: 58
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

#58683 07-19-2006 01:37 PM
Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
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.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)

Moderated by  Eva Grayzel 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5