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Almost a Year from Rad

w6nnh
Posts: 14
Joined: Jul 2012

 

I guess I am a survivor of Squamis cell on the back of my tongue. I went through  surgery Last year May and had a tumor along with 2/3 of my tongue removed. They also removed my limthnodes form left side of my neck. After a couple months of healing I went through 40 rad treatments. The oral mucus got so bad I could not hardly eat. I would not of made it with out Boost and Brussels Sprouts

 

 It was hell for about 4 months. I went from 290 down to 216. I have gained back about 18 lbs. I still cannot handle catsup or any food with any spice. My taste is still not completely back. I don’t taste any sweet and very little salty, my oncologist said it might be as good as it will get. My dentist made me a fluoride tray and prescribed me fluoride, which  use at night. I don’t have many teeth left, so I am trying to keep all that I have. They discussed oral surgery to shave my jaw bone for lower dentures, but the surgeon said because of the radiation  would have to go through 30 to 30 oxygen treatments and I still have the chance of the jaw not healing. I decided not to have the surgery. My dentist said she would try to make me dentures. She said they properly would not fit due to the scaring from the radiation.

 

 I have very little saliva, which is a problem during the night. I keep Biotien and a class of water by my bet side. Speech can be difficult, with the lack of teeth, 1/3 of a tongue and little saliva. But I am hanging in there. It still I guess is a small price for life.

 

It has been about 8 months that I have been on the message board. It has really helped me to deal with the cancer. I Thank Everyone, and pray for all of you.

 

 

 

phrannie51's picture
phrannie51
Posts: 3853
Joined: Mar 2012

the last one being June 15th, 2012.  I'm beginning to be a believer in the 2 year theory.....that things just slowly get better for two years after the end of rads when it comes to taste and saliva.  Just in the last two months my taste for food has improved tho I'm still lacking in the sweet taste big time....and still slightly in the salt area.  I now have moments where I have enough spit to lick my lips, but water is always at my side if I eat anything but soup....and I've become a huge soup eater!! Smile 

Glad you decided to post....we love survivor stories!!

w6nnh
Posts: 14
Joined: Jul 2012

A lady who I work with, had her husband diagnosed with the same cancer as me last November, His doctor recommended for the lack of saliva a product called Xylimelts. She said they are a godsend for her husband. The stick on your cheek and keep your mouth moist. I went on their web site and ordered a sample pack.  I hope they help. I will post my results. Right now I keep the biotien spray and water by my bed site, and keep water with me always. I still have the sweaty taste in my mouth. Some juices help. There is a Strawberry Banana Fruit Drink at Aldi’s that taste pretty good, actually is is the only drink other than chocolate milk that taste good.

I am on needles and pins right now. Friday I seen my ORL Doctor and he found a tiny spot. He biopsied it. I should know later this week. I sure hope it is nothing. I just two weeks ago was seen by my oncologist and she said everything look good. The ORL Doctor is a new to me. The Doctor who did my surgery last year retired this month.   My wife thinks because I am a new patient he is not taking any chances. If so I am glad he is. Now it is the waiting for the results.

It will be OK.

phrannie51's picture
phrannie51
Posts: 3853
Joined: Mar 2012

when I was on my trip.....they were great!  I used them when we spent two days shopping, since water was something I only got at lunch and dinner....I popped them in my mouth and held onto some saliva as we crused the stores.

Will tuck you into my pocket for your "spot results"....sending positive thoughts

p

CivilMatt's picture
CivilMatt
Posts: 3094
Joined: May 2012

W6nnh,

I too am class of 2012 rad graduate (March 23rd) and face similar side effects. I taste a little of everything, with steak about my favorite and ice-cream in last place, but I keep trying.

I just popped a couple of Xylimelts a few minutes ago (time for bed).  I find that they work very well to help fight off dry mouth (temporarily).

You sound like you have a good attitude considering your battles.  That truly is the way to master the  side effects, a positive outlook and acceptance for what is.

As P51 says we are on the multi-year plan to recovery.

Good luck,

Matt

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

Nothing more special than that first year achievement. 

Congrats

john 

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

If you want to try Xylimelts without investing allot, contact the maker. They will send you a sample package for $5 shipping. Matt swore by them so I thought I would give them a try...it was the strangest thing, I used one and presto, it started my juices flowing. Not full speed but much improved over how dry it was.

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