Nasopharyngeal cancer (after radiation)

Sorry to hear of your Dad's late effects 10 years post tx. It's just crazy what this can bring on. My cancer was different and I'm sorry I can't offer any suggestions but don't give up looking for the answers. 

i can't offer any advice but i will be praying someone is able to provide you with some solutions to the problems.  it is hard to see what cancer does to us even long after tx.  i pray that while they are looking for a cure they will also continue to improve the brutal tx for this nasty disease.  in the meantime, don't give up trying to find answers.  they may be out there.  praying for you and your dad.  i'm glad he's got you looking over him.

God bless,

dj

I am right at 12 years passed the first treatment and 10 passed my second, side effects will get worse as the years go by but there is a lot that you can do. He needs to be doing daily stretching exercises of his neck and tongue, he can contact his doctor and maybe they can help him to see a therapist who can help and show him what he needs to be doing and the correct way to do it. Please continue to post here on CSN and we will do all we can to help.

Welcome to CSN H&N

Hondo   

When I started reading your thread I was about to say Botox for the neck but it seems you have tried that and then you mentioned HBO.  Botox has reduced my neck pain (not eliminate), definately need daily streching maybe even twice a day.  Did you give Botox time to work? it usually takes 2 weeks to kick in.

Also I was thinking maybe acupunture or maybe chiropractor.  You have to remember our problems dont have simple easy quick solutions, they require time and patience.  Radiation does severe deep damage to the point that it even restricts blood flow to the area.  No blood flow, no oxygen, no food, no healing.

Here is a really crazy idea - esential oils.  Talk to some naturalists about oils.  I use peppermint oil on my neck and shoulders to take the pain away and it works in minutes (and it smells wonderful).

Hello,

In 2012 i had a treament for stage 4 NPC 36 years old.Chemo and radiation completed in 2013.  i think i'm having now the same issues like your dad,sleeping problems and nesck spasms. I just started to get worried to know how long it will be continued,what else i can do to have less neck pain.i only do some massage therapie and that help some time temporary. i'm not sure if these symptoms are due also to the cold weather. let me know if you found any treament that is helping your father.

Regards,

Phil

I have been having back and side spasms as well lately and I guess didnt think about it being from the treatment. It has been startling to me that it happens since it has never ever happened in my life.

francma said:

Hypoglossal Nerve damaged from radiation

Hi! I am 4 yrs out since March. A year ago my tongue became deviated. Had severe head pain for three weeks and within a couple of days my tongue deviated to the right. Had Catscan and two MRIs since...seems to be a late effect of radiation. Food is sticking to the back of my throat....learned to hack it up..gross..sips of wAter with each bite. Applesauce works great too, especially swallowing pills. Recently saw my rad onc and is trying a new med and vit E to see if can help with the scar tissues from radiation. Not hearing too many people with this problem...possibly two. Only about 4-5% of patients had this happen..thank God. Seeing speech therapist too. I am hoping and praying my speech will be normal someday, but thank God I am alive! God bless us all

I know the problems you are having just hope you will be able to keep swallowing but if not don’t let it get you down. I live on a PEG tube and live is just as good as it has always been.

Tim Hondo

Sympathize with your Dad's condition, which is new to me. I do expect at least a partial jaw replacement in about 6 years, but had never heard of the shrinking of the tongue. 

Been thru two rounds of Botox, with the first helping, and the second not having any positive effect. Neurologist has been dealing with my condition for over a year, now, and is connected to the U of Iowa. Has me on high-dose Clonazapem and low-dose Baclofem, now. Since that combo started the sleep is better, but when awake the spasms don't seem better. I have heard of severing of certain nerves, so that may be an option.

The specifics of all our Cs are different to varying degrees, and his specifics are likely the cause for his symptoms. Is he going to a major C-med center? 

kcass

Radiation therapy and chemotherapy, although helpful, increase the risk of sensory disorders that can affect the taste, speech, smell, vision and hearing. These damages may be related to the toxicity of chemotherapy or a direct action of radiation therapy. These disorders can be temporary or permanent, and can put you at risk of secondary aggravations. Affection of the taste or smell puts certain patients at risk of nutritional deterioration of the general condition and quality of life. Please see more about cancer treatment side effects .

To answer your question directly, it is important to know that radiation to the head and neck areas affects your teeth, tongue, salivary glands and gums, majorizes alterations of taste and the risk of dental problems, including cavities, bad breath, loosing teeth, and others. His tongue cataract is also possible present in patients who received high dose of brain irradiation. The occurrence of neck spasms (severe) and deterioration of the tongue seem to be serious complications which I have never heard before.   Learn more on cancereffects here..

beachgal15 said:

swallowing issues

Hi - I am new to this site.    My sister has severe trismus/fibrosis due to radiation and it is getting worse.   She can only open her mouth the width of her pinky finger.  She is losing weight and is terrified of a feeding tube.   How long have you been on the feeding tube?  Any words of wisdom you could share?  Thank!

This May will make 3 year for me on the PEG tube;

I have use a lot of different type of PEG tube and so far the best of the best PEG tubes is the  Mic-key low profile button. It has giving me my life and my manhood back. I can eat anything I want through the PEG tube. If you need my e-mail address is on my all about me page e-mail me I will be able to share more about living on a PEG tube. I also can’t open my mouth so we are in the same boat.

God Bless

Tim Hondo