CSN Login
Members Online: 17

Nasopharyngeal Carcinoma

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

- Age
28 Male

- Age of diagnosis or time since diagnosis
April 2010

- Specific type of cancer (squamous cell, salivary gland, thyroid, others)
Nasopharyngeal Carcinoma

- Treatments: surgery, chemotherapy (if possible with names), radiation, etc.
8 Weeks of radiation complete
4 weeks of chemotherapy complete (cisplatin / 5FU)
2 weeks of chemotherapy to go

- Please state your question clearly.

So far I have responded greatly to treatment. My oncologist cannot see nor feel my tumor anymore, thank god. It was quite large and could be seen by looking down my throat without special instruments, it was classified as stage 4.

Has anyone been through this? If so what was your experience with side effects of both radiation and chemotherapy? What side effects did you have?

I can tolerate the treatment, its not as bad as it was when I was going through radiation. I was very vigilant about drinking to maintain proper swallowing motor skills. I guess my biggest gripe right now are my side effects of the treatment and wanted to hear from someone who has had the same experience and did they ever subside?

My current side effects:

- Ringing in my ears. It drives me up the wall, I never have peace and quiet, its always a tone in my ears. I read this can go away, but after how long? When did your ringing go away if you had it?

- To much spit. I took a drug during treatment to prevent dry mouth called Ethyol. One of my worst side effects is that I secrete so much mucus in my throat I have to constantly spit it out. It effects my speech and my breathing, its like the consistency of egg, not very pleasant. Again if you had this how long did this last? I'm told it goes away but WHEN? My throat is chapped from the constant hacking.

http://www.ethyol.com/

- Eating. I just begun eating very soft food again, its been about two months since I actually could swallow anything. Liquids are fine I can drink perfectly ok. My jaw is super tight and I have to stretch it all of the time. What sort of foods should I be eating? Soup doesn't have enough calories. When should I force my self to eat solid food? I had some of my molars pulled before treatment so eating normally at this point is out of the question. I can push more calories through my g-tube than my mouth, which I need to change. I need to sever my dependency of the g-tube. I have lost 67 pounds so far, I'm at 210 at 6ft tall.

I guess I really just want to hear back from someone who has gone through this. I'm tired of listening to doctors tell me it will get better over time, while I am living this nightmare.

Thank you for reading and I hope to hear from someone.

John

RushFan's picture
RushFan
Posts: 218
Joined: Aug 2010

Hi John,

I am 48 years old, 12 weeks post treatment of 33 rads and once weekly Cisplatin for seven weeks. I was diagnosed with SCC unknown primary, had a lymphnode removed prior to treatment. Here's my experience so far in a nutshell:

During treatment I too had "rope" saliva. Horrible, caused more dry-heaving than chemo. Now I'm bone dry, though I think some salivary function has started to return as of yesterday. Taste is at 50-75% of normal I guess.

I have always had tinitus / ringing in the ears...probably my love for loud music when I was younger and rock concerts.

I did not have a PEG. Drank as much Ensure/Boost as I could, still lost 30 pounds. I could not eat any solids until about 6-8 weeks post treatments. I'm now eating 90% of calories, using Ensure to supplement. Only gained back five pounds. I'm not eating as much or as healthy as I should, but just working on eating. Mac-n-cheese, eggs, apple pastry, grits with cheddar, chicken breast, ripe bananas, life cereal, all bran, green beans, diced red bell peppers, sliced tomatoes, cottage cheese, yogurt and others. I need to take a small sip of water or milk with each bite to help breakdown. 6' tall...started at 210, now 185 lbs.

Your young age should be a real plus...I'm guessing.
This site is a great resource, with really nice people. Stay positive, get the rest you need and hopefully your recovery will be speedy.

Best regards to you and everyone here.
Chuck.

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

Hi Chuck,

Thanks for your reply, your experience has helped settle some of my anxiety about when I should be getting "better". I'm about 4-6 weeks out of radiation, so maybe I am jumping the gun.

I have found I can eat apple sauce quite easily, Jello is a cinch, soups like I said are easy. I have been trying to be more adventuress by trying some beef a roni but the sauce burns my throat still, assuming its the acid from the tomato sauce.

I guess I am just pushing to hard now to be normal again. It's been terrible and I'm sure you can relate.

Thank you again, I appreciate your thoughts.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi John,

Sorry about the cancer but glad you found your way here. As far as side effects go, the ringing in your ears is called tinnitus. There are things you can take for it even some things over the counter. Best to ask your doc. The mucous is terrible but it does go away. I had to carry a spit cup with me all the time. Now it is cleared up and I am pretty dry mouthed. Have to carry water everywhere. I am 4 months post treatment and I am able to eat some foods and taste is 70% normal. You didn't say how long you have been finished with rads. I also had 6 teeth pulled before radiation.
Just hang in there and things will get better although it may be slow. You won't see daily improvement but count weeks instead for now. Not saying that to discourage you but to just being honest. Stay strong and things will come around.

Best,
Steve

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi John,

Sounds like you going along OK but you are in the slow period of recovery. Mentally, best to measure your improvements by the week, not the day, as there will be slow periods and minor fluctuations in your recovery. You will get much better John, so don't despair, it's just a slow patch.

Your saliva should stabilize over time. It's a good thing you have saliva, many of us don't and it sucks. Tinnitus as per Steve's Comment.

Eating, definitely keep increasing food by mouth as much as you can and try healthier options. You probably still ned a good nutrition 'shake' either by mouth or tube to give you body the grits it needs to recover. Your weight is fine and you maybe should be happy to keep it at the current level. lean is good.

I followed a routine of vitamins and supplements for my recovery so if interested, check my Expressions page.

Hang in there John, look for the brighter patches each day getting more frequent. Do some light exercise and get yourself 8-9 hours sleep every night and stay positive.

Scam

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

Scam,

Thats good to hear. I guess I'm just jumping the gun to fast and being impatient. I have been out of work for almost 3 months now and I guess cabin fever has set in. I return to work in September, 2-3 weeks after my last chemo. I feel really good now compared to what I did a month ago or even weeks ago. I can feel my self getting stronger, but no where near to what I use to be.

Thank you for your thoughts!

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

John,

Welcome to this site. Sorry you find yourself here, but there's a great bunch of people here with tons of knoweldge. I was told my tinnitus (ringing) and my hearing loss was caused by Cisplatin which I see you took also. I'm 4 months post-treatment and still have the ringing but it's improved somewhat the last few weeks. I don't know if it's gotten better or I've just gotten used to it, but it is tolerable now. Whereas about a month out it was driving me batty also.

As for the excess spit, I had the exact same symptoms as RushFan. I had the the ropelike phelgm that choked and gagged me for about a 3 week period of time. Couldn't keep any food down then and lost 30#, out of total 50# lost, during that timeframe. By far the worst time of my recovery. (Chuck, you're one of the first I heard had that same gagging issue). But it did eventually get better, even though the outcome is the familiar dry mouth. And I'm still on the PEG but only use it 25% of the time. My eatting is getting better every day as I'm sure all of your side effects will too.

What you're going thru is probably one of the roughest times. Hang in there. Like Steve says, measure in weeks or months versus days. Just think "How did I feel a month ago?" and pretty soon you'll be saying "A lot better now than then".

Good luck and sending positive thoughts your way!
Greg

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

So sorry to hear you are having to endure this torture. My husband has hypopharyngeal cancer and was treated with rads/chemo also. Had most of the side effects you listed, and they've all eventually gotten much better. Now he has a reocurrence, but that is a different story....

He is 8 months out from his original treatment and able to eat most things, has most saliva, mand most taste back.

Hang in there!

RoundTwo
Posts: 1
Joined: Aug 2010

Hi Kim - my husband was originally diagnosed with squamous cell nasopharnx cancer in Nov 05 - June 06' was told it was gone. Oct 28th 2009 began passing out - Jan 9th 2010 told the cancer was back. He did 1 gamma knife and 5 chemo therapy treatements - June 2010 told it was smaller - Just last week we had taken him to ER ended up being cellulitis when led to hospitalization, then CT scan and then PET scan with news that it is now larger - man this is a bit much!!!

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

Greg,

The ringing gets better as the weeks go by in between treatment, meaning the tone isn't as high pitched as it was at the beginning. I guess its bearable considering what I have been through :)

We are in the same boat as Rush and yourself. The phlegm would make me gag and puke all of the time. It was worse than the reaction to chemo. I would cough, choke and then puke almost instantly. Its not that bad anymore, it's thick but it does not make me puke anymore thank god. I do gag still but it's getting better.

Thanks for your thoughts Great, greatly appreciated!

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

Steve,

The nurses said I should carry a spit cup but the stuff I cough up and spit out is thick and nasty so I opt to carry around tissues and spit into a tissue and toss it away. I'm sorry to hear you have dry mouth, that's one of the things I am most scared of having. I use biotene products now to help, I don't have dry mouth yet. I have been out of radiation for about 4-6 weeks now. It's all a blur, I was on a lot of medication and I just zoned out to be honest. I can't believe the radiation is over, 8wks.

My taste has come back some, the other day my wife picked some fresh peaches and I actually could taste PEACH, it was like being reborn.

Thanks for your thoughts Steve, I appreciate it greatly!

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

Kimmy,

Sorry to hear about your husband. How are you doing? My wife has been my crutch, I could not have done this without her. I'm sure your husband feels that way. I want you to understand that you play a very important role in his happiness and welness during this time and to keep your head up. Even when he is down, he loves you and appreciates you so much he can't express it.

Hope all goes well.

Best wishes.

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

Carried a little bucket I bought at Lowe's for most of my treatment.

Had a PEG, and all I could injest thru the mouth during treatment was H2O and chopped-up pills, but the PEG Jevity formula did right by me. Ensure and Boost are good liquids w/calories- you gotta get the Nutrition into you. I started with an Ensure diet, then moved up to Pancakes, and have settled into a chef-style salad mode.
Believe

kcass

timreichhart
Posts: 195
Joined: Aug 2010

Hi Guys
I was treated for the same thing as original poster and my question is I just got done with my 7 weeks of radiation on 8/16/2010. My question is how long does it take to heel from this radiation and when am I able to regular food again? because I have lost about 36lbs from this whole radiation and never had any problems eating food while on chemo why does radiation change the food pattern for?

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

Hi timreichhar,

It's going to take time. Depending on how burned up you are inside. Thats the battle I'm fighting now. I'm about 7-8 weeks post radiation and my tongue and throat still burn. My mucus problem has decreased greatly, however I still hack stuff up. It's going to take time and everyone is different. The best thing to do is take it slow and practice every day. If you can swallow practice on water and very soft foods. I'm not sure what you can tolerate now, but don't rush. I'm still using my feeding tube 80% of the time. I have a feeding for breakfast, lunch and mid afternoon snack. I eat a normal dinner, typically soup and yogurt. I'm still on liquid food through the mouth because I burn so much still.

Hondo's picture
Hondo
Posts: 5722
Joined: Apr 2009

Welcome to the CSN family

John is right on the money, we are all different and so healing is not all the same. My first time with radiation was like 3 months before I could start to taste and eat little things with no pain. The good part is that it will heal and you will get you taste back some, it all takes time.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Tim,

I started eating gruel or congee (rice soup) to start but it may take about 2 months to start eating again and still you may be limited on what you can eat. I went vegetarian and so salads and soups were my main stay with fresh papaya in the morning (great healing fruit). Check my expressions page for more details and my view on the nutrition side.

Doing great now 10 mth out SCC Left tonsil 7 weeks erbitux and IMRT (2x Day). I was in very poor shape when I came out and I lost 40lbs.

You are perhaps in the worst part where improvement is vey slow and hard to measure so guage your improvement by the 'week' not the 'day' to see you improvement as your condition may fluctuate a bit for a while as you have taken a severe beating. Get good nutrition as best you can so your body gets what it needs to recover.

Scam

timreichhart
Posts: 195
Joined: Aug 2010

Well only my right side of my tongue is burnt/beat up and I have mouth sores from the radiation and when I went to see my chemo doctor and he told me that was common and that it would take 7-10 days to heel and today 8-17-10 would be 6 day trying to heel the mouth sores. I know when I swallow things like milk or water it hurts and I have been taking APAP with codeine to manage the pain but I don't want to keep taking drugs just deal with the mouth sores. Did anybody else get mouth sores after radiation? I have alot of mucus and I started to notice when I hack the mucus up there is little bit of blood every time so I called my radiation doctor and they told me that my throat can be very sore from coughing and hacking the mucus up alot. I also with the mucus if there is alot of it I throw up and I get light headed and sweat after waiting couples of throwing up I am ok. How long did it take you to clear up the mucus or reduce the amount of mucus besides taking mucousx?

Also my chemo doctor ordered a pet scan which I get that done in oct is that 2 soon for a pet scan? I also meet with my radiation doctor for follow up next month hopefully the follow/check up comes back ok.

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

I would say that is all pretty normal. I had the same problems as you. Im almost two months out after radiation and I still burn. Going to take time :) My mucus drastically reduced around the one month mark, however it is still here just not as bad. I'm still going through chemo too so I can't heal as well or haven't had the time to heal normally.

timreichhart
Posts: 195
Joined: Aug 2010

John your still doing your cancer treatments? because I am all done with chemo and radiation already. because I started chemo first then radiation last. Also are you still working or not during this whole process? because right now I am not working but on FMLA right now which is about ready to run out so soon as that runs out I am going to see if I can get short-term disability insurance. Due to I cant really talk due the radiation burns to the throat area. If any wanted to know what I do for work I do tech support for a local area ISP.

Also John what kind of meds are you taking? because the chemo doc and radiation doc give me these meds:
Salagen 5MG tablets post to help with mucus?
Xanax 5MG post to help with sleeping problems at night
Tessalon 100MG to help with cough
Ativan 1MG to help for nausea
Fentanyl Patches 25mcg/h help with pain
Compazine 10MG help with nausea

I probably spent over 300 dollars for meds its unreal how much money you spend for these meds.

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

I have one more chemo treatment go go still, Aug 30 is my last one with a 5day 5FU bag. I took about two months off with FMLA. I have been working from home. I manage a help desk, so we are in a similar field. I too need to talk a lot and I'm just now able to speak with out pain. I've been working from home now for over a month and I go back to the real grind on or about September 13th.

The only drugs I am on now are:

Compazine 10MG, for nausea
Ativan 1MG, sleeping at night and nausea
Nystatin, for thrush
Zofran, for nausea

How is the Salagen working, never heard of it. I have read several people using the Fentanyl patches, what does it help with?

Thanks!

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

Which felt like a burning sensation on my tongue. The meds do help. I am 2.5 months post treatment and trying very hard to lose my feeding tube. Swallowing does seem to get easier daily. It doesn't hurt - but my esphosgus is not working right and food doesn't always go all the way down. Hence, choking and spitting. Not great for eating in public.
I had my first ct scan at 7 weeks followed by an exam.(clean) My next exam is scheduled for the end of September. My goal is to stop using the tube by Sept 15.

Michelle H
Posts: 7
Joined: Aug 2010

Hi John, thank you for starting this post. I just finished my radiation and chemo treatments last week so I'm just starting the healing process. Your post here and everyone's responses have really helped me in what to expect during the healing process.

I've had the yucky mucus too which made me throw up this morning (sorry if that was too much information), and have the ringing in my ears/hearing loss which is driving me crazy at this time from the cisplatin. I'm hoping this goes away over time.

I'm obviously still on the g-tube right now but luckily don't have a whole lot of pain and don't take much pain meds at all. I have some scratchiness in my throat but that's the extent of it except for when I swallow. I do have some minimal pain when swallowing.

I'm so happy from all of your eating ideas with the soups, etc. That's going to help alot.

John, it's so good to hear that you are doing well 8 weeks out from treatment. That really gives me something to look forward to!

Michelle
37 years old, Throat cancer on base of tongue (HPV+), 36 rad treatments, 3 cisplatin treatments

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

I'm glad my post was able to shed some light on what to expect. That was my biggest fear is knowing what is coming down the road. The people that are here are great and have lots to share, don't be afraid to ask questions or post. Heck I threw up the other day coughing up a lung and gaging on the good ol' mucus. It's quite all right to mention it :)

So far I have been able to eat spaghetti, noodle soups, yogurt, apple sauce, canned fruit, beef-a-roni, ravioli. I'm trying to get off of the feeding tube still. Out of my three meals for the day I use two to three feeding tube feedings. I typically try to eat dinner. The only that is holding me back now is the burning on my tongue and throat, internal. Its not muscle pain but it feels like a paper cut and salt, to give you an idea. So eating all the time is not an option. I think its partially thrush which I just started Nystatin again today to help with it. I try to drink a lot of V8 Fusion juice, has a mixture of fruits and veggies. But it feels like I'm drinking fire, but water afterwards helps.

timreichhart
Posts: 195
Joined: Aug 2010

I know how you feel about throwing up I did that yesterday after I got done taking a shower and I don't know why I am keep throwing up for I don't know if its the mucus or what. But I can tell you that my mucus is not bright yellow its more like clear now. I started to have mucus when I had my 4 week into radiation so I don't if its clearing up now or what. But my biggest fear is trying to eat spaghettio's due to throwing it back up or have a flaming mouth/throat. I know I cant drink anything got sugar in it because feels like crap or hurts my mouth since I am still battling with mouth sores under my tongue. As your radiation doctor tell you to take zinc 3 times a day for 3months to regain tease back? I think I am going to start taking 25mg of zinc so I can get some tease back.

are you guys taking vitiams or not while trying to recover from chemo/radiation?

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

Thats the hard part to deal with eating and knowing you may throw it up dealing with the burn. I know what you mean, you don't know why you throw up it just kind of happens. It gets better, the only time I feel sick is after my chemo and I only have one left. On my two off weeks I don't puke unless I'm totally gagging on something nasty. That is good news that your mucus is not yellow or colored, its a good sign you are healing. Sometimes mine has color sometimes not, I wonder what causes the color change? I know in the mornings its kinda of pinkish but thats expected because I keep sleeping with my mouth open and the membranes are probably dry and cracked. I have a similar problem with my tongue that you do still, but its the sides of my tongue and it runs the entire length of it, imagine a soar that covers the length of your tongue? As your mucus begins to get better you will throw up less, I have noticed this. I only spit up maybe once or twice an hour were I use to every 5 minutes. In the past it use to be like handfuls of spit and mucus now its maybe a quarter size or a coin dollar size. I puke a lot less now that I'm not gagging. I can clear my throat and swallow down the mucus most of the time now.

As far as vitamins are concerned, I still use the tube feeding formula which is packed with vitamins so I don't take any supplements. I was told not too during treatment because they may interact with other drugs. Once I'm done I plan to take Centrum Men's Health vitamins daily.

You know what I had a craving for today, peanut butter and jelly sandwich and a side of chips with some italian soda. Man the things we miss when we can't eat what we want. In due time though :)

charles55's picture
charles55
Posts: 87
Joined: Aug 2010

One of the first things I could get down that I could actually swallow without choking was oddly enough, peanut butter mixed with honey (heavy on the honey) and a glass of cold milk. It was heaven, and still is. I never ate that before in my life but I was looking for something with a lot of protein and calories. Even though I am eating well now, I still go back to it when I want to treat myself. It is my way of saying "@$*# on you, cancer; I win."

atuck
Posts: 5
Joined: Oct 2009

John,

I was diagnosed @ 19yo in 1992. I used to keep a list of foods I wanted to eat when I was through with treatment. As much as I hated the g-tube, it probably saved my life. I threw up everything that went down for my entire 14 months of treatment.

I spit into a cup during radiation, too. These days, I can;t eat anything without a bottle of water nearby. My mouth is constantly dry. I'm very sensitive to anything spicy! (Here in Minnesota we consider ketchup spicy, so take that with a grain of salt!)

Everything took time. It really disrupted my life, it was a bad age-like I imagine it is for you, too. God, like there's ever a good age. But, things will get better, some will return to baseline, some just get better then they are now.

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

Thanks for your insight atcuk I appreciate it!

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

A belated welcome to you, from another NPC. From what you write, you seem to be doing pretty good. My Chemo delivery was a bit different, and only needed 31 full rads, along with the last 3 partials; and, as for the eating- took me about 6 months to get to the point that I could tolerate almost anything. Taste will be different, of course, than before, but it's a learning part of the experience, so to speak. Glad you are with us, and hope you will stay active- success stories, and support and helping others from what we have learned, is what we are all about.

kcass

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network