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Strange and Stranger

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

What makes things taste odd?
What makes water taste better??

Any thoughts are most helpful!
Stacey

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

You are one of several of us, now, staceya. Taste- do you have NPC, and don't have a feeding tube? Do need to know. I'm a 15-month survivor, with very few lasting negatives- dry mouth appears to be the largest issue! Are you getting both chemo and rad? It is my understanding that such is the current treatment for NPC, rather than just rads. Hondo and Hawvet are the Elders with NPC, not me. Please provide us with some info on what's going-on with you: diagnosis and symptoms, and treatment details. For us to be able to advise in regards to this, or that, we do need some info. And as for opening-up, staceya, nobody has been more revealing on their treatment w/meds than I have. It does concern me- if you are only getting rads. My Oto/ENT is tied to the U of Iowa, and to him-NPC is chemo and rad, in combination, as a no-brainer= only way to treat. PLEASE let us know what the details are with you.

NPC has an excellent survival potential. The Elders are proof, as am I. You now are part of our family of support, staceya, if you let us be. However, there is no room for failure with us- we only are in this fight to win, as we have, and as you will. staceya- you will get thru this, as have I, and as have the Elders.

Believe, and you will.

kcass

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

The more information you can provide on what you have and have gone through would help us help you.

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Hi Stacey

After treatment starts and you are about into the second week your taste will start to change as the radiation or Chemo starts to burn the taste buds on your tongue. You might also notice that when taking radiation you will smell a metallic taste, no one knows why this is, but I was told by one guy that trace mineral in our blood passing the radiation beam could be one cause.

After treatment is finish and your taste starts to come back you will get another surprise, stuff you once liked you will no longer like and stuff you did not like before you will like, it is all part of the new Normal you.

At one point in my treatment I could not stand the taste of water, I am to this day not sure why.

In time everything heals and we learn to live our new life just a little different then it use to be.

God be with you.

fsdman
Posts: 51
Joined: Jul 2009

I am a 8 month NPC survivor. Kind of a rookie here. I remember thinking that I would NEVER want to eat again. I hated water but had to wash things down. I loved pasta and hated fish.My list of possibly edible things shrunk during treatment. Everything burned. It will never end !!Well I now love all kinds of fish. I dont eat it because I can (as it started out)I really enjoy the taste.Yes I said taste-it comes back. With me it went up by plateaus. No gains for a few weeks then a huge improvement in some aspect. This gain happened several timesto the point that if I dont improve further-I can live with it-LITERALLY.Use this board They have been a great help to me knowing I am not alone.Most important is to keep a good attitude-you will survive-things will improve-good luck.

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

There is getting to be quite a few of us NPC survivor here, I am 4 ½ years passed treatment Kent Cass is another who is about 15 months or so passed. I hope you plan to stay; there are a lot of NPC people needing the help of those who have passed through the tunnel already and need us to shine the light for them to see the way.

Take care

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

I second Hondo's welcome to you- please stay active. All experiences can be of help. Hondo and Hawvet are the Elders of NPC, but we are all AS ONE, fsdman. When I went thru treatment, now many months ago, it was just me and the Drs. doing battle with C, as I did not even know of this site. Now, I have those who are active in head and neck on this (THANK YOU) ACS site standing beside me, as I deal with the reality of C being with me, or once having been with me, and that includes the likes of very good people, like Hondo. We've all survived it, fsdman, and Stacey, and ain't any of us gonna let C win this battle. You are not alone with your battle. If anyone has concerns- let it be known, and you will benefit from the experiences of others, just as you may be of help to others.

Believe.

kcass

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

Thanks so much for all of your suggestions.
This site is SO helpful.
Here are the basic details.

Info:
Age 49

Dx 12/24/09 T1,N0,M0 NPC

Plan 35 Rads (do not know amounts etc)with daily Amifostine infusions.Day 12 of 35.

Meds Amifostine, Decadron, Anzemet, Zofran, Compazine, magic mouthwash, other
mouthwashes, Colace etc.

Job Registered Nurse, still working part time..BUT I don't think for too much
longer. I work mostly in Administration at this point or I would not have worked
these last 2 1/2 weeks during treatment.

Update I was able to eat until Friday, when overnight my throat seems to be unable to
swallow even secretions...Water tastes less salty now..I am hungry, but it is a
bear to swallow, if you use the mouthwash, your mouth is too numb to eat??
I have read the whole tube thread, may be a plan. I am 5 feet tall 100-105 as a
baseline, 100 today, not much room to go.

Thanks for any guidance
Stacey

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Just a little trick on what I would do: I would water down the magic mouthwash to a 50/50 mixture or less sometimes and swish it in my mouth, it still numbed it some but not as bad, I was able to still swallow and eat.

Take care

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

Thanks that was helpful.
On Tuesday, I started using caphosol, which has been a miracle! Insurance is covering as it is quite expensive, and I am able to eat small bites of solid food. That and the food channel.
Before the caphosol (artificial saliva) I was having trouble even with liquids..
Thanks for the advice!!

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