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post NPC radiation and chemo treatment

frank10g
Posts: 37
Joined: Jan 2010

I am a 56 asian male and was diagnosed with stage 3 NPC. I finished 35 times of IMRT radiation and 4 times concurrent chemo with rad 2 weeks ago. I was treated in Kuala Lumpur, Malaysia. South East Asia countries oncologists are more familiar with NPC. I am able to eat soft food and fruits now but having lots of mucous that keep coming like post nasal drips. This keeps me awake at night and I have to keep on hacking and coughing during the day. The ENT prescribed antiobiotic but I am not sure if this is the right treatment. Can anybody help me with my situation? any advice or similar experience. Thank you very much. Frank

Hondo's picture
Hondo
Posts: 5795
Joined: Apr 2009

Welcome here to CSN, there are a few of us here with NPC, I finish my last treatment in 2005. The after affects are different for everyone. I did not have the nasal drip problem but did have everything else. I am not sure if you are using any type of milk or dairy product as it can form mucous in the body. I f I remember it took a few months after treatment for the mucous to let up some, and now 4 ½ years later I don’t have a big problem at all with it anymore unless I get a cold.

There are some natural products you can get that will help, I will be home in a few days and will send you a massage with the name of the stuff.

Take care.

GRAVEY's picture
GRAVEY
Posts: 84
Joined: Jan 2010

The doc is prescribing you that to make sure its not an infection of some sort. My doctor held off on giving me antibiotics and my mucus issues just went away, I would be careful of the antibiotics just because your immune system is already weakened from the treatments you are undergoing, it's up to you ultimately, but just know mine went away after about three weeks after my last radiation treatment. You could see if the doctor could put you on allegra, or claritin, or something like that to help dry up that mucus, I have dry mouth and no saliva, but I keep a water bottle on me at all times, and the allegra really helped dry my mucus up. It dries up everything else also, so I take it every other day rather than every day like the prescription calls for.
Good luck, and prayers be with you......
GRAVEY

frank10g
Posts: 37
Joined: Jan 2010

Thank you for your replies. I will wait and see if my condition improves. I'd also like to share a book that I just finised reading called The Miracle of Enzyme by Hiromi Shinya MD. I found the book very interesting. He wrote that drinking Japanese green tea and dairy products can actually promote cancer. You can google and read more about him. I would like to visit his office in NY someday. - Frank -

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

The mucous is still an issue early in the morning for me, and I figure it's the gravity/horizontal thing of being in bed. Other than then, just the dry mouth and thick foam that's my saliva, which are constant. 14-month NPC, Frank, treated by those affiliated with the U of Iowa, in the heartland of America. Click on my name to get the details of my treatment specifics. Lived with morph and ice, and 4.0 formula, for 4 weeks- enough said about that. There's a growing number of us, NPC, and I welcome you. Know this thing is more common in SE Asia, but Babe Ruth also had it, and 2,000/year in the USA are diagnosed, so it does happen everywhere. Your experiences, and info, are most welcome.

kcass

frank10g
Posts: 37
Joined: Jan 2010

Thank you for your info. I was given antibiotic because when the doc did culture on my phlegm, they found out that I was infected with certain bacteria so I had no choice but to take strong antibiotic which I still have to finish yet. In my 4th week of treatment, I lost my voice and couldn't eat, so they inserted tube feeding which I kept for about 3 weeks. Then because of my infection, I was so weak that I needed to be hospitalized for 5 days with IV drips constantly to give enough nutrition. I lost 24 lbs. Now I am on my way of recovery, eating better but voice hasn't come back yet. The ENT told me, I will get it back eventually. Still having a hard time sleeping through the night, the post nasal drips is bothering my throat. I am planning to fight this monster and get 100% well and better. I think a change in the diet with better quality food will definitely help. In Singapore and Malaysia, one new NPC patient is diagnosed everyday, so it is a common type of cancer. - Frank -

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Are you in Asia? In southern China NPC is endemic (15:100,000 - the 6th most common cancer), but in the west is affects only 1:100,000, fairly rare when compared to the other cancers.

You are an inspiration to all of us Frank. I am 8 days out of a selective neck dissection where they *think* they got it all. I will get rads but maybe no chemo; the jury is still out on that. I hope I am as strong as you when I go through this.

Warmly,

Mick

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

HI Frank,

I went through treatment in HK and also had bad Mucus issues for a while. Hondo's advice on avoiding Dairy is important though being Asian, you may not be a big consumer ?

When I had it bad I was given Fluimucil (Generic name - Acetylcysteine).

http://www.flexyx.com/F/Fluimucil.html

It came as orange flavored powder in small sachets which you mix into a glass of water. This helped break up the congestion caused by the mucus. I used to take it in the evenings and it made sleeping much better.

Be assured it does reduce. I am about 15 weeks out of treatment and still get a bit on certain days but nothing like when I was fresh out of treatment.

I am concerned (like Gravey) that your Doctor gave you antibiotics !!! While they may assist in braking up the mucus, they also weaken your immune system.

I hope the above info helps you out.

REgds
Scambuster

cjamesfu's picture
cjamesfu
Posts: 14
Joined: Sep 2009

Your mucous situation will improve over time. In my case, five years after completing the treatment, I still have dripping nose occasionally. When it drips so bad, the nose membrance becomes too dry. I use saline spray on my ENT doc's suggestion to relieve some of the dryness.

Hondo's picture
Hondo
Posts: 5795
Joined: Apr 2009

I would like to know what type of cancer you had if you don’t mind sharing that info, I am now 4 ½ passed treatment for NPC. Five years out of treatment is very good news

God bless

frank10g
Posts: 37
Joined: Jan 2010

Thank you all for sharing. Hondo, I will do some research on the thing you suggested. You are such a brave guy. Cancer is a disease that affects mind, body and spirit. Keep your spirit high and you'll survive. My cancer is stage 3 NPC. I am getting better every day, the progress is slow but encouraging. The last ENT I saw was very good and he taught me how to irigate my throat through my nose with a syringe and salted water, I have to lie down to do it and then hack the liquid out from my mouth. That helps my mucous and I also use flumuicil like advised by scambuster. I can eat most food now but the taste buds hasn't come back yet. So for anybody out there who is having a hard time going through radiation and chemo that affect the throat, hang in there. Things will get better.
Frank in Asia

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

That irrigation w/syringe and salted water does interest me. At night, being horizontal, is a thing- the nasal drains into the pharynx area, and it's not good to swallow.

I've never been told what stage of NPC I have/had, but it first showed w/two tumors on my neck's left side, so I kinda figured it was rather advanced. 15-month NPC survivor, now, Frank. Salads w/French dressing, and Sprite/7-Up do please my taste buds. Struggling with depression of recent, but that's a separate issue.

kcass

frank10g
Posts: 37
Joined: Jan 2010

I once found a website that tells you how to stage your NPC base on the symptom. My onco gave me a paper with lists of NPC symptoms and staged mine based on this, but staging is not important. I am sure your doctor treated you accordingly. I am now 3 weeks out of treatment and feeling fatigue. Can't do anything I like to do eventhough I eat a lot (I try to eat a lot, thanks to my wife who always by my side and prepares food for me. Wondering when this fatigue will go away and am able to go back to work.
Kent, It is important not to get depressed, it is not good for your body's immune system. According to some research found on the internet, depression or negativity will make your body acidic and cancer cells thrive on acidity. A cheerful heart is a good medicine, stay positive and be happy. You are not alone.
Frank

cjamesfu's picture
cjamesfu
Posts: 14
Joined: Sep 2009

I was treated for NPC, which is highly curable. Reading this forum, I find many success stories. It is very encouraging.

Hondo's picture
Hondo
Posts: 5795
Joined: Apr 2009

You are so right Cancer affects not only the body but the spirit and soul as well in a person that is why prayer is just as important as treatment. There have been a few studies I read about where people were put into groups of 100 each; one group would receive prayer and the other none, after a year it was found that the group who received prayer were doing a lot better then the group who did not. If I can find the story again I will forward it to you.

Please keep us up dated on how you are doing, and thanks again for for massage

God be with you

frank10g
Posts: 37
Joined: Jan 2010

Hondo, I am so fortunate to have so many groups of people in 3 different countries praying and fasting for me during my ordeal. I am also humbled by this experience realizing my limit as only human and learned to surrender to God almighty. I am sure prayers work and I will remember to pray for you too. Thanks, Frank

Ibuild4u
Posts: 5
Joined: Feb 2010

Frank..
I placed a cool mist humidifier on my husband's night stand that gently drops moisture over him throughout the night. This has provided some much needed rest..He also sleeps in a semi-propped up postion which helps with the drainage.. He still has the awful fluid, and coughing spells..But has found some respite with the humidifier..

Hope this Helps...
Kathy

janymac
Posts: 31
Joined: Feb 2010

I am from England. I am 8 years post NPC. I still have enormous problems with mucous deposits and personally find it very frustrating as am constantly sniffing, and if it gets too blocked, then my speech goes funny and can't breathe through my nose, so have to resort to mouth breathing which is so unconfortable as still have major problems with no saliva, and my throat end up stuck together when mouth breathe. If you have crusting deposits, then one doctor from the mediterranian that I saw, suggested steam inhalations of dried sage in boiling water through a face mask - the sort you get to enhale during a cold follloed by a nasal douche of salt water. It worked really well. Also recently after my major way of douching the nasal area was "nuffing in" a large mug full of salted water to try and force out crusted deposits - and always ended in coughing and choking, my specialist suggested using something called sterimar which has a great applicator. It is basically a salt spray which, if you apply it when lying down and try to "hold" it in the nasopharygel area, does a great job and can then expel it with a big sniff and cough.You do need to lie down and not sniff to soon though.I have bottles of it at home and work, in the car etc. and has been a life saver for me.

I also find the problem get worse about mid morning or early afternoon as it takes awhile for gravity to set in for the mucous to start travelling south from my sinuses and it usually happens at some embarrassing moment.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Thanks for that excellent tip and congrats on your 8 yeas post-NPC!

Can you detail your NPC for us? Discovery, staging, surgery, and other treatments? Putting your current difficulties in context to what you received in terms of Tx is a helpful measurement for us just beginning our battle.

Best,

Mick

janymac
Posts: 31
Joined: Feb 2010

I have started to recount a bit in the calling all NPC survivors thread. will carry on tomorrow with a bit more.It is a long story!!

lizajane
Posts: 2
Joined: Dec 2009

Has anyone had problems with their jaw? I have gone through so much Radiation, my jaw has a mind of its own, which is so painful. When I open my mouth, move my tongue around, eat something small, my jaw pulls to one side, sometimes locks up. Sooo painful. What to do??

Hondo's picture
Hondo
Posts: 5795
Joined: Apr 2009

First Welcome to CSN

Its normal for someone to have Jaw problems after rad, I can’t open my jaw more then ½ inch and I get a lot of pain if I try to open it any wider then ½ inch. Also the nerve has been damaged on the left side which gives me numbness of the tongue and pain in the right side of the neck. I will say if your Jaw is pulling to one side more then the other call you ENT and have him look at it, it is possible that the jaw could be fractured in the joint don’t wait.

Take care and let us know how you are doing

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