Side effects of radiation and chemo for treatment of NECK cancer.

michaela7863

Hey all. I am new to this forum, but I have questions. I am 7 weeks post radiation and chemo treatments for HVP small cell squama's carcinoma. I knew most of the side effects going into my treatment plan. They all sucked but I knew. I lost my taste after week 2. Needed a feeding PEG tube after week 5. The horror show had begun. I lost 35 lbs because I was not eating and was always behind the 8 ball with dehydration. I absolutely did not want anything in my mouth after week 2. The mucositis was a gross pain in the **** too. Anyway, I am 7 weeks post treatment. Still cannot taste anything. My salivary glands are still pissed off. I am not producing any saliva, and my mouth is as dry as a desert. I understand time is my worst enemy at this point with recovery and healing. Has anybody else experienced these side effects? I know this is all on an individual basis. How long do they last post treatment? Are any of them permanent? I am finally able to eat some solid foods but only very small portions and with lots of cream sauces and gravies. Can't taste any of it though which sucks and this is one of my main worries. (TASTE)Temporary or permanent? Thank you all for your time. God Bless

wbcgaruss

Hello, michaela7863, and welcome to the CSN H&N discussion forum.

I am combining several different sources here so there may be some repeats.

Now that you are through the brutal treatment, let the healing begin.

My oh my, brings back memories for me, we all make it but it is a tough haul.

I have been at this a while and have had 35 rads and chemo.
I have had cancer 3 times and spent a lot of time on the discussion boards.
As for myself and the many recoverys i have read about I need to say probably 98% or more get their taste back to some extent.
Very few lose it altogether.
Treatment of head and neck cancers is pretty standard at 35 radiations spread over 7 weeks with chemo added many times in the beginning, middle, and at the end of treatment.
Also, some cases get more chemo as on a case-by-case basis.
I would say just about 100% of patients lose their taste completely or a certain amount of it.
I lost mine completely.
No Taste.
So as long as you can eat, when you have no taste, things taste like cardboard for a couple of weeks and you are forcing food through, literally forcing yourself to eat a certain amount of food each day to get a certain amount of calories in to keep your weight stable.

Glad you got the feeding tube, surely a lifesaver and great help in our time of trouble.

after while you will notice a tiny bit of taste coming back usually sweet is first for a lot of people.
Each case is different because each person is physically different, their cancer is different, and their treatment of radiation is different and differently administered.
So as far as each person gets taste back is not known till after you recover and see where you are at.
There was a fellow on my local support group whose taste never came back and as I said earlier that is unusual.
So if you talk to 20 H&N patients with radiation some will say they got almost all taste back, some 20%-30%-40-%-50%, etc.
I have about 30% myself.
But you won't know till after the fact and then that is what you live with.
H&N cancer treatment is Brutal but it is improving.

So from what I have seen over the years is people get their taste back with varying degrees.
And there are people who never get their taste back.
I have seen it on the forums and there was a fellow in our local head and neck group that did not get his taste back.
If you have no taste you are in a very small group because for the most part I have witnessed people usually get some percentage of taste back.
Some very little but some, and some people get back near 100%.
I don't know if the salt and baking soda helps with your taste at all, it is mostly used during treatment for thick saliva and a gunky mouth.
As far as I know there is no way to get back taste or smell although I have read of changes happening up to 5 years out but generally after 2 years what you have gotten back is what you are unfortunately stuck with.
I have read from people on the H&N forums is that one thing to try is if there is a Smorghasboard in your area go there and try little bits of varieties of food and see what may give you taste or possibly stimulate your taste buds.
This situation is damage from the radiation and once damaged you can't get back 100%
I have had radiation twice and I would say my taste is around 30-40% I got back.
Also if you have any taste be thankful and just try all kinds of different foods it may help.

So you are 7 weeks out of treatment, which means you are finally starting to feel some improvements.

Now is recovery.
Once radiation stops we are as they say cookin yet from the treatment for about another 2 weeks I guess because radiation is cumulative.
Then generally speaking once treatment is done it will be about 4-8 weeks till he starts noticing that hey today I think I am feeling just a little better finally.
From there on he will have small improvements over time.
Recovery is a slow process taking weeks and months not days and weeks like a bad cold or the flu.
So figure 8 months to a year for a full recovery.
So prepare yourself a bit and plan out the time so you both get enough rest and nourishment.

Do a little something each day and that can be the win for the day.

Our motto here is NEGU (Never Ever Give Up)

Here is a video you may like…

Lost in Transition -- After Cancer Treatment Ends

https://www.youtube.com/watch?v=u90dYwZT7oE

I would also recommend you check out the Superthread at the top of the head and neck home page there is loads of information in there with links and you will find it helpful.

Wishing You The Best

Take Care, God Bless

Russ