NPC survival side effect

PaulJoseph · September 2010

I am from Malaysia. Detected NPC stage 3(T3N0M0) on June 2009. Already finished 35 radiation n 6 round of chemo since last August 2009.
My side effect now is lack of saliva, fatigue and alot of phlegm.

Recently, i encouter blood stain in my phlegm especially waking up in the morning.
Check with ENT doctor, he give me 2 weeks antibiotic and told me that it is cause by our radiation side effect.

I would like to know is anyone here encouter the same problem like me.

Please advice/share how to control our Thought, Stress and Food to fight this "C" to prevent it to recur.

Thanks.

PaulJoseph

Pam M · September 2010

Sorry to Be Able to Provide No Info
PaulJoseph,
Welcome to the discussion site. I'm only 5.5 months past treatment, so I have not encountered the longer term side effects of treatment - we have lots of folks here who have, though, and I'm sure they'll reply very soon.
I am trying to eat a healthier diet, and get exercise (I ate poorly and rarely got exercise before). I'm focusing on eating more vegetables, and less meat. I'm looking for a job now, and am seriously thinking about going into a different type of work to reduce my stress. I'd love to know what others are doing, too. Be well.

PattyNC · September 2010

Pam M said:
Sorry to Be Able to Provide No Info
PaulJoseph,
Welcome to the discussion site. I'm only 5.5 months past treatment, so I have not encountered the longer term side effects of treatment - we have lots of folks here who have, though, and I'm sure they'll reply very soon.
I am trying to eat a healthier diet, and get exercise (I ate poorly and rarely got exercise before). I'm focusing on eating more vegetables, and less meat. I'm looking for a job now, and am seriously thinking about going into a different type of work to reduce my stress. I'd love to know what others are doing, too. Be well.

I have no answers for you ... but the pro's on this site will !!
PaulJoseph. This site is definitely the right place for getting information and support from many who have walked your same path. We'll put you in our prayers.

fisrpotpe · September 2010

Came and Went
I did have some of this over the many years(14+). Back in the beginning all they would do is to see me more often and keep an eye on it. I have had it come and go several times over the years without an understanding of what it was. I can say this that I have had far fewer blood stained phlegm over the past years and i do not count them but I would guess two over the last 10 years.

Please let us all know how the meds help.

John

Scambuster · September 2010

Hi PJ
Welcome to the CSN group. You should be able to get good support and experience from the gang here. I am on a similar time line to finished treatment Oct 6 2009.

1. Your blood in the phlegm may be a result of the dryness up in the sinus cavity causing irritation but you need to keep a close watch and maybe have them (ENT) scope that area.

2. Saliva - We have have 3 mains sets of salivary glands and if they took a major hit from the Rads, then they may not recover. Luckily we have 600 other tiny salivary glands throughout out mouth and on our tongue and these should allow for some Saliva production. I have been getting acupuncture since December 2009 and I think it has helped me. You be able to find good acupuncturists in ML.

3. Fatigue - a strong possibility is a run down immune system and maybe liver and kidneys not running at 100%. I have been taking a wide range of vitamins and supplements to boost and strengthen my immune system and digestive system. I have the list on my expressions page if you are interested. It worked for me, I feel great now and better than I have for many years. I have also gone mostly Vegan and I believe that has also helped. I have no fatigue at all after 20 years of Chronic fatigue.

4. Keeping mentally strong - I can suggest you do affirmations and maybe yoga. Louise Hayes brilliant book called 'You Can Heal Your Life' - is well worth a read.

Hope these points are of some use.

Scam

PaulJoseph · September 2010

Pam M said:
Sorry to Be Able to Provide No Info
PaulJoseph,
Welcome to the discussion site. I'm only 5.5 months past treatment, so I have not encountered the longer term side effects of treatment - we have lots of folks here who have, though, and I'm sure they'll reply very soon.
I am trying to eat a healthier diet, and get exercise (I ate poorly and rarely got exercise before). I'm focusing on eating more vegetables, and less meat. I'm looking for a job now, and am seriously thinking about going into a different type of work to reduce my stress. I'd love to know what others are doing, too. Be well.

Thanks Pam, hope u will
Thanks Pam, hope u will getting new job be healthy again.

PaulJoseph · September 2010

PattyNC said:
I have no answers for you ... but the pro's on this site will !!
PaulJoseph. This site is definitely the right place for getting information and support from many who have walked your same path. We'll put you in our prayers.

Thanks Patty, May Lord Jesus
Thanks Patty, May Lord Jesus have mercy on us. We will pray together.

PaulJoseph · September 2010

fisrpotpe said:
Came and Went
I did have some of this over the many years(14+). Back in the beginning all they would do is to see me more often and keep an eye on it. I have had it come and go several times over the years without an understanding of what it was. I can say this that I have had far fewer blood stained phlegm over the past years and i do not count them but I would guess two over the last 10 years.

Please let us all know how the meds help.

John

Thanks fisrpotpe

Thanks fisrpotpe

PaulJoseph · September 2010

Scambuster said:
Hi PJ
Welcome to the CSN group. You should be able to get good support and experience from the gang here. I am on a similar time line to finished treatment Oct 6 2009.

1. Your blood in the phlegm may be a result of the dryness up in the sinus cavity causing irritation but you need to keep a close watch and maybe have them (ENT) scope that area.

2. Saliva - We have have 3 mains sets of salivary glands and if they took a major hit from the Rads, then they may not recover. Luckily we have 600 other tiny salivary glands throughout out mouth and on our tongue and these should allow for some Saliva production. I have been getting acupuncture since December 2009 and I think it has helped me. You be able to find good acupuncturists in ML.

3. Fatigue - a strong possibility is a run down immune system and maybe liver and kidneys not running at 100%. I have been taking a wide range of vitamins and supplements to boost and strengthen my immune system and digestive system. I have the list on my expressions page if you are interested. It worked for me, I feel great now and better than I have for many years. I have also gone mostly Vegan and I believe that has also helped. I have no fatigue at all after 20 years of Chronic fatigue.

4. Keeping mentally strong - I can suggest you do affirmations and maybe yoga. Louise Hayes brilliant book called 'You Can Heal Your Life' - is well worth a read.

Hope these points are of some use.

Scam

Thanks Scambuster, u hv help
Thanks Scambuster, u hv help me with yr advice. May find the right acupunturist.

I do take some supplement but dont know it is right or not to enchane my health.
Take wheatgrass juice in the morning and vitamin E1-E8 and Selenium.

I m doing qiqong exercise in the morning nowadays.

Please do sent me yr supplement information page. My email address is pckk5533@yahoo.com.

Thanks.

Christmas · September 2010

Side effects
Hi, PaulJoseph:

You have scar tissue from your radiation. Irrigate your nasal area morning and night or as needed. My doctor gave me a syringe and I just use plain water. But other survivors use other methods. There are saline sprays available.

As for saliva, it may take a while for it to come back. You won't get all of it back. Try massaging your neck area and below your ears.

If you are feeling tired, have your thyroid checked. It is very common; the radiation affected your thyroid function. Most of the NPC survivors take a low dosage of thyroid medication.

Listen to your body. Give it time. Don't rush things.

Welcome to the survivor group!

PaulJoseph · September 2010

Christmas said:
Side effects
Hi, PaulJoseph:

You have scar tissue from your radiation. Irrigate your nasal area morning and night or as needed. My doctor gave me a syringe and I just use plain water. But other survivors use other methods. There are saline sprays available.

As for saliva, it may take a while for it to come back. You won't get all of it back. Try massaging your neck area and below your ears.

If you are feeling tired, have your thyroid checked. It is very common; the radiation affected your thyroid function. Most of the NPC survivors take a low dosage of thyroid medication.

Listen to your body. Give it time. Don't rush things.

Welcome to the survivor group!

Thanks Christmas for yr
Thanks Christmas for yr information.

Hondo · September 2010

Hi Paul

I too am a NPC survivor for almost 6 years now, what you describing sound normal. There is a lot of scar tissue in your nasal passage and it will get dry and crack and bleed. Your ENT should have told you about using a Nasal Rinse like NeilMed or something at least three times a day; this will help with the problems in the Nasal area. Other stuff you can use for dryness is Stoppers 4 I get this at www.drugstore.com . Other then that if you need my e-mail address is on my post just click on my name Hondo and send me an e-mail I will do all I can to help you through this and on to becoming a survivor.

God bless and be with you

micktissue · September 2010

Paul
Your throat has been damaged. You have less saliva to lubricate your mouth and throat. You have a lot of mucus. If you're like me you cough up a lot of mucus in the morning. Given the fragile state of your throat it is likely you are breaking blood vessels when you cough (as do I) and that is where the blood is coming from.

I'm not sure why he'd give you antibiotics if blood is your only symptom (are you also having a fever?) though.

Best,

Mick

Kent Cass · September 2010

micktissue said:
Paul
Your throat has been damaged. You have less saliva to lubricate your mouth and throat. You have a lot of mucus. If you're like me you cough up a lot of mucus in the morning. Given the fragile state of your throat it is likely you are breaking blood vessels when you cough (as do I) and that is where the blood is coming from.

I'm not sure why he'd give you antibiotics if blood is your only symptom (are you also having a fever?) though.

Best,

Mick

Also NPC
My bleeding problems were only while treatments were happening- and only in my nose.
I think Mick might be correct. And, please heed Scam's advice (he knows one heckuva lot more than I do).

kcass

PaulJoseph · September 2010

Kent Cass said:
Also NPC
My bleeding problems were only while treatments were happening- and only in my nose.
I think Mick might be correct. And, please heed Scam's advice (he knows one heckuva lot more than I do).

kcass

Thanks Hondo, Mick and Kent.
Thanks Hondo, Mick and Kent. Already check with ENT n scope inside nostril. Everything ok.
Take another 1 week medicine to reduce phlegm.
All of your view is correct, my throat irratation causing blood stain in my phlegm.

God bless u all.

PaulJoseph · September 2010

Hondo said:
Hi Paul

I too am a NPC survivor for almost 6 years now, what you describing sound normal. There is a lot of scar tissue in your nasal passage and it will get dry and crack and bleed. Your ENT should have told you about using a Nasal Rinse like NeilMed or something at least three times a day; this will help with the problems in the Nasal area. Other stuff you can use for dryness is Stoppers 4 I get this at www.drugstore.com . Other then that if you need my e-mail address is on my post just click on my name Hondo and send me an e-mail I will do all I can to help you through this and on to becoming a survivor.

God bless and be with you

Hondo,may i know what method
Hondo,may i know what method u used to fight last cancer recurrance? Full body cleasing? Type of juices u used? I read about this type of cleansing but confuse about its step/method.

Last month, i did try liver cleansing for 1 week. Skip all meat. Breakfast with juices, skip lunch, evening with juices again and dinner with alot of vegetables.

I am using Bruess Juices concept in the morning- Mixing Beet, potato, carrot, radish, celery, apple and lemon.

Evening, i using Burdock, pineapple, apple, carrot and lemon.

Anyway, after 5 days, i failed the test, i m too tired, depress and hunger for good food again.

I still continue with juice n vegetables drinking everyday. Normally, brocolli with apples, Bruess juices or burdock juices.

Please advise.

Hondo · September 2010

PaulJoseph said:
Hondo,may i know what method
Hondo,may i know what method u used to fight last cancer recurrance? Full body cleasing? Type of juices u used? I read about this type of cleansing but confuse about its step/method.

Last month, i did try liver cleansing for 1 week. Skip all meat. Breakfast with juices, skip lunch, evening with juices again and dinner with alot of vegetables.

I am using Bruess Juices concept in the morning- Mixing Beet, potato, carrot, radish, celery, apple and lemon.

Evening, i using Burdock, pineapple, apple, carrot and lemon.

Anyway, after 5 days, i failed the test, i m too tired, depress and hunger for good food again.

I still continue with juice n vegetables drinking everyday. Normally, brocolli with apples, Bruess juices or burdock juices.

Please advise.

Hi Paul
I will send you a PM

frank10g · September 2010

PaulJoseph said:
Thanks Hondo, Mick and Kent.
Thanks Hondo, Mick and Kent. Already check with ENT n scope inside nostril. Everything ok.
Take another 1 week medicine to reduce phlegm.
All of your view is correct, my throat irratation causing blood stain in my phlegm.

God bless u all.

post NPC radiation treatment
Hi PaulJoseph, I am Frank and was diagnosed with NPC stage 3. Finished treatment January 2010 in Wijaya Centre Malaysia. I have the same side effects that you described. I was wondering if my taste buds will ever come back? right now it is only about 50%. I have lots of phlegm in the morning but sometimes it is stuck to my throat because of dryness and hard to get it out. I irrigate my nostrils with syringe every morning and it has helped me. My ear is blocked and has affected my hearing. Do you also have this problem or anyone?
I have avoided taking CT scan for check up and using MRI with my ENT instead because CT scan poses another danger of cancer causing elements. I am also avoiding all meats except for fish, eating lots of vegetables, fruits and juices.

PaulJoseph · September 2010

frank10g said:
post NPC radiation treatment
Hi PaulJoseph, I am Frank and was diagnosed with NPC stage 3. Finished treatment January 2010 in Wijaya Centre Malaysia. I have the same side effects that you described. I was wondering if my taste buds will ever come back? right now it is only about 50%. I have lots of phlegm in the morning but sometimes it is stuck to my throat because of dryness and hard to get it out. I irrigate my nostrils with syringe every morning and it has helped me. My ear is blocked and has affected my hearing. Do you also have this problem or anyone?
I have avoided taking CT scan for check up and using MRI with my ENT instead because CT scan poses another danger of cancer causing elements. I am also avoiding all meats except for fish, eating lots of vegetables, fruits and juices.

Hi Frank, I think taste buds
Hi Frank, I think taste buds will come back by time. For me, it came back almost 90% after 6 months. The problem is I only have 20-30% saliva ! My hearing is ok but phlegm is the main problem on me. Almost everyday i have phlegm, sometimes its alot n sometimes it less.
Sometimes it came out with blood stain.

I do irrigate my nostrils with syringe two times per day- morning and night.

My next scan is next yr February. I am unable to do MRI scan now because the medicine "contrast multihand" (if i m not forgot d name) that injected into my body make me allergy!! During the MRI scan last time, my whole body is getting red, i hv very difficulty to breath becos my throat is almost blocked by allergy inflammation. Luckily i finished the scan n being treated by the doctor till the allergy is over.

I am afraid if CT SCAN will make me allergy next time. I hv done 2 times CT scan but is ok last time but i still getting fear about it. Hope it will not give me problem. I do think bout PET scan but it is so expensive. Only Penang and KL hv PET scan.

I am too into vegetarian, fish n fruits juices. Sometimes I do eat some pork meat but not chicken.

Do u take supplement?

Larla · September 2010

frank10g said:
post NPC radiation treatment
Hi PaulJoseph, I am Frank and was diagnosed with NPC stage 3. Finished treatment January 2010 in Wijaya Centre Malaysia. I have the same side effects that you described. I was wondering if my taste buds will ever come back? right now it is only about 50%. I have lots of phlegm in the morning but sometimes it is stuck to my throat because of dryness and hard to get it out. I irrigate my nostrils with syringe every morning and it has helped me. My ear is blocked and has affected my hearing. Do you also have this problem or anyone?
I have avoided taking CT scan for check up and using MRI with my ENT instead because CT scan poses another danger of cancer causing elements. I am also avoiding all meats except for fish, eating lots of vegetables, fruits and juices.

Ear blockage
Frank10G,
I am one year post treatment for NPC and I had 75 % hearing loss in my right ear the side of my tumor.My ENT placed a tube in my ear when I received my biopsy prior to my treatment and I have regained almost 100% of the lost hearing. Ask your doctor about it. As for taste I can pretty much taste everything but swallowing is another topic.
Larla

frank10g · September 2010

Larla said:
Ear blockage
Frank10G,
I am one year post treatment for NPC and I had 75 % hearing loss in my right ear the side of my tumor.My ENT placed a tube in my ear when I received my biopsy prior to my treatment and I have regained almost 100% of the lost hearing. Ask your doctor about it. As for taste I can pretty much taste everything but swallowing is another topic.
Larla

Thank you friends for
Thank you friends for replying to my post. It seems we all have almost similar side effects from radiation treatment. I am flying to KL next week to check with the ENT. I am in Jakarta Indonesia. Paul, I take herbal supplements daily as prescribed by an alternative medicine doctor. Well meaning friends and relative have advised me millions of advises on what to take as supplements. I am confused and end up with this alternative herbal thing. This doctor has pretty good reputation.
Larla, why is swallowing hard for you? is it dry?
Frank

NPC survival side effect

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