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NPC treatment longterm side effects

npcsurvivor
Posts: 21
Joined: Nov 2009

Hello gentle folks,

It's been a while since I posted on the forum. I have checked it out only a couple of times lately. Hope all of you are doing fine. It's been 2.5 years since my treatment ended for T2-N0-M0 NPC. I am happy to report that I am still in remission. However, I have been experiencing some side effects of the chemo / radiation treatment. I was wondering if others have experienced similar side effects and if and how they have handled / overcome them.
Greatly appreciate any input.

- I have noticed that I have a greenish mucous in the nose and throat most notably in the morning. Nasal rinse which I do daily helps a lot but teh mucous still lingers some days more than others and is back every day. I developed pneumonia last year when I traveled. I just got another sinus infection which is being treated by antibiotics. It seems like my immune system is not very strong and when I don't get enough rest or get stressed the bacteria take over.

- I feel cold in the hands and feet. The feeling seems to be getting worse over time. I am on levthyroxine 150 mg and my TSH and T4 levels have been normal. My energy levels have been reasonable and I get close to 8 hrs sleep. I have been trying to walk every day on treadmill(not in the last week due to the infection) and that helps with the cold a bit. However, the feeling of coldness especially in the hands is quite bothersome. have been experimenting with gloves.

- I have been losing mass (muscle as well as fat) around the neck and face area (where I got radiation). My cheeks have slowly been sinking in and the neck feels quite weak and is becoming more and more prone to spasms. I have not lost much weight, if any, over the last year. (I am a male 43 yo, 5'7'', 156 lbs). The face thining is quite depressing but I would say I have handled it ok so far. I hope it doesn't get any worse, if not better!

- I have struggled with heartburn and stomach irritation type of issues in the last two years. Have done a ton of tests. In the end, the only thing they found was that I was lactose-intolerant and had moderate gastritis. I have experimented a bit with various foods and supplements and as for now it's somewhat under control with Prevacid 15mg.

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

Also NPC, my last rad was in 4/09.
For me, the teeth are the biggest issue, followed by neck spasms that come and go, and an abundance of not-so pleasant mucous- especially in the overnight.

Interesting you have noted that about your cheeks sinking in, as I am also experiencing some lower-face/jaw changes. It feels like my neck and jaw muscles/tendons(?) are tensed-up most of the time. Have even overheard co-workers speak of how I'm always wearing a frown, or look angry. It's like such as that is my new normal for the sides of my face adjacent to my mouth. Even have a scar-like line on the left side of my face where I have never been cut. And, the spasms are as bad now as they've ever been, with times in the morning I have to look to the ceiling for an extended period of time just to get relief.

Also, I've been dealing with a Cold for the past month. Living in the upper-midwest, I went to my Dr a couple weeks ago, and he was dealing with a Cold of his own. He, too, looked and sounded miserable. Seems my congestion is a little less, now, but something is still going-on with both the nasal and bronchial, and may be tied to my immune system, as I just can't shake this Cold.

Would really be interesting to hear if any other 2+ year NPC survivors are also noticing facial changes like we are.

kcass

npcsurvivor
Posts: 21
Joined: Nov 2009

Hello Kent,

Thanks for your response. It is re-assuring to find someone who has or is dealing with similar issues. I am wondering if there are exercises we could do to keep the face / jaw /neck muscles from shrinking. I used to chew gum a lot in the initial months after treatment when I had dry mouth. Now that the condition has improved I don't chew as much.

I have been blessed with good teeth and apart from some sensitivity I haven't had any problems with them. I use a recaldent tooth paste at night (MI paste) recommended by a dentist friend which helps protect the teeth at night and keeps the sensitivity down. (Directions for use: brush with a bit of paste, keep it in mouth for a few minutes, spit excess and don't eat or drink anything by mouth, even water).

Hondo's picture
Hondo
Posts: 5734
Joined: Apr 2009

I am just about 9 years out of my first treatment and 6 ½ from my second. Side effects I still get are the green stuff in the noise but mostly when it is an infection starting so watch it. If you are already taking antibiotic that should help to clear it up. Mucus is just something we have to learn to live with, when I rinse my noise it sometimes make me sick to see what comes out.

I too am always feeling cold, in fact I sleep with three blankets on me at night just to try and stay warm and I hate to see when it is below 60degrees outside. On the heartburn try taking Papaya Enzymes it helps me and it is also good for your body and stomach problems.

I am 6’ 1” and can’t get over 159lbs talk about thin face; I sometimes look like a skeleton with skin. But the good thing is we are still alive my friend.

Take care
Hondo

npcsurvivor
Posts: 21
Joined: Nov 2009

Hey Hondo,

Sorry for the belated reply. It's good to hear from you. It seems that you are also unable to put on weight like me and suffer from low temps. I asked the doc about it and he didn't think it was common among survivors. Like you I am also glad to be alive. However, the image of the self in the mirror always reminds me of the past and worries me that the beast might still be lurking inside my body. I have started taking some pro-biotics which seems to help. Will try the papaya extract. I know that raw papaya is an excellent tenderizer for meat.

Hondo's picture
Hondo
Posts: 5734
Joined: Apr 2009

I found a new pain med that is really working well for me. It not only helps with the pain but also helps with depression that I have now and then. One thing I have notice is that my muscles in the arms and finally getting a little meat on them. I still look like a skeleton but at lease I look like one with muscles. This year in November will make 10 years from when I first heard the word Cancer.

Take care, life is beautiful
Tim Hondo

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

I too have the left side of my face shrinking. I find if I smile alot it doesn't look as noticable. I am almost 2 years out and as Kent said, my neck is tighter than a fist, but the face is starting to sag on the left. Must be a side affect we should inform dr's of, maybe no one ever said anytning because they were too happy to be alive!
I too have cold hands and feet. My wife says it's because I drink water all the time. May be but looks like we all have the same cold feelings. And not to mention the ringing in my ears.......as hondo says, life if good, enjoy the day.

npcsurvivor
Posts: 21
Joined: Nov 2009

It's good to know we're not alone. Life is good... but that's not the only reason to keep us smiling ;)

Christmas
Posts: 91
Joined: May 2005

I'm an eight year NPC survivor. It seems like the side effects are the same for all. I must have had more radiation on my right side, because my face is thinner on my right side. I have less hair on my right side.

Last year, I had lots of bladder and eye infections. Even went to a urologist to make sure I did not have bladder cancer. (Recurring blood in the urine.) My internist put me on a megadose of vitamin D, and now I try to remember to take my daily vitamin D pill.

As for being cold - I have the same symptoms, but it not too bad. Maybe I don't have it as bad because I'm Asian and I'm brought up with some dietary rules/habits.

Whether it's old wives tales or not, old Chinese folks believe that in the winter, you should eat lamb/goat to stay warm. Especially helpful is lamb soup/stew with lots of ginger root. I'm told to use a lot of ginger in my cooking.

I definitely have to irrigate my nose. My doctor recommended a syringe, but I found NeilMed Sinus Rinse from Costco. My husband, who has allergy problems, is using it also. When he first tried it, he said that it was like waterboarding. I like it because the plastic bottle with the tube is easy to use. It comes with a salt/sodium bicarbonate mix which makes the rinse PH balanced so the water doesn't sting very much. I use half a package with warm water.

If I don't keep the nasal area clear, then I have eye, ear, and throat problems. Oh well, just add this to my daily routine.

My teeth, due to dry mouth, is badly stained at the gum line. I can live with that also. Since my treatment, I've lost one molar, had one filling, and one root canal.

My husband says to attribute everything to old age, and not to cancer.

Thanks to all for sharing. It's nice to know that we can help each other, because as some of my doctors say, we're anomalies. Not too many doctors out there are experts at treating cancer survivors.

tinagao
Posts: 2
Joined: Mar 2012

Hey,friend,for heartburn, have you tried papaya? Does that work for heartburn? i learned it form you guys posts. and my mother-in-law got severe heartburn and cough recently.she's 70 and she will do the 3rd chemo next week with radiation. if that is good at heartburn, we will have a try.

Good luck

tinagao
Posts: 2
Joined: Mar 2012

Hi,Hondo,i'm so glad find your post in this place.My husband's mother got treatment one month ago, she's 70 years old.you know, with the radiation and chemo,that's not easy for her. for these days, she got a lot of painful in her throat, she cannot eat even drinking water especially the constipation make her suffer alot. also, you mentioned the heartburn and papaya Enzymes? is that a drug? powder? cough and nausea and heartburn and painful with her throat, as well as the constipation are the problems we met presently. Could you pls give us some suggestions ? Thank you and God bless you.

jtl's picture
jtl
Posts: 420
Joined: Sep 2011

I sometimes wonder about the longterm side effects of the drugs and radiation now that I am past the treatment stage. The longterm effects of the platinum drugs are fairly well documented but I'm not sure that 15 years ago drugs were used in conjunction with radiation and other drugs so who knows what that combo produces. The drug I took is so new that there aren't any longterm stats yet so I have no idea what to look forward to. I know my onc made it clear that everything does permanent damage in some way or another.
John

timreichhart
Posts: 195
Joined: Aug 2010

Well I can tell you what I am dealing with right now:

Light headed all the time (still dont know what causing it)
numbness in the arms and legs due to chemo/radiation treatments
hearing loss
neck and shoulder problem (possible spinal cord injury from radiation treatment and I have mild arthritis in the neck from all the radiation treatments this is all told to me by my neurologist)
TMDJ
Mucus problem
Swallowing problems
Dry Mouth

Eversteve
Posts: 4
Joined: Apr 2013

All of the articals above ring true but this one truer (to me) than the rest. I am 2 years to the good but I still have the ailments as stated above - but I also have a loss of concentration + it alost feels like panic attacks whe i have do do something ESPECIALLY going out of my confort zone ie my house. I seem to have turned into a different person. I am still the MD of a company of 25+ (probably through charity), but I have loast all the "go out and get + multitasking" I used to have. For me, I plod on SSDD for my kids, but I hate what I have left. Oh yes, my short term memory is shot to its as well.   

debbiejeanne's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

eversteve, this is a really old post.  if u want responses to your new post may i suggest u copy and paste it into a new post.  people may overlook it it since its from 2012. 

dj

Eversteve
Posts: 4
Joined: Apr 2013

You guys and girls that have commented below are nspirational and made a middle aged man very happy. I have been suffering for 5 years and many people have given up on me, as I believe they think I am just milking it. I am 3 years and thankfully - I am told - still in remission, but I thought I was going mad. Forget the mornings and the stuff I have to get rid of, I can live with that, but I look like Skeletor, I get tired alot, my jaw locks and as for my arems, legs, fingers and toes - they lock up, BUT my biggest proplem is the loss of concentration and dizziness. Sometimes I feel I have a mix of being a nutter, an alcaholic and having torrets.........I do not mean this negatively but I am so pleased it is not just me, thank you all and good luck. Yell

Christmas
Posts: 91
Joined: May 2005

Hi, Eversteve:

I may have a suggestion regarding your loss of concentration and experiencing dizziness.  How often do you eat?  I've found that having small meals throughout the day helps.  I'm not sure if it's low sugar or low something, but an empty stomach seems to bring on problems for me.  Also, if you get tired a lot, have you had your thyroid checked?

Christmas

Hondo's picture
Hondo
Posts: 5734
Joined: Apr 2009

Glad to see you are still around and still coming back and posting, hope you are doing well

Tim Hondo

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