Nasopharyngeal Carcinoma and my experience
. In April 2000, I was diagnosed with cancer.
. Cause: Epstein Barr Virus ,excess of salt intake, salted fish,sufrace borne saliva borne airborne flu (Epstein Barr virus) airborne, (&from salted roast duck/chickens).
. Symptom: lump on neck, uncomfort ear, nose, neck.
. Treatment: radiation (+chemotharapy, surgery)
. History
. NPC is cancer of the nasopharyngeal, above the throat, below the sinus. In 1880, a German physician noticed people in Canton had a high incidence of swollen necks. Research later showed it is an uncontrolled growth of tissue at nasopharygneal, causing death. It affects 1/3000 South China people. It may be due to N-nitroamine affecting the DNA chromosomes. N-nitroamine comes from ingestion of local salted fish. In 1964 Dr Epstein and Dr. Barr discovered that most NPC victims carries a virus Epstein Barr virus. It also found that this virus is everywhere, transmittable from person to person, air borne. It also causes other disease such as "infectious mononucleosis" short for "mono" or kissing disease, glandular fever, Burkitt's lymphoma, and nasopharyngeal carcinoma. It spreads from mother kissing baby, coughing, etc. Most people were affected before age 6.Whether it develops into mono or NPC depends on genetic and immune condition, high level of EBV infection, stress or body condition. Currently research are concentrating on detection, and vaccine. Current treatment: radiation, chemo, surgery.
In South China, there are more Chinese have NPC than other nationalities. But in US, there are more Caucasians have NPC than Chinese, even these Caucasians have never been exposed to salted fish or any contact with Chinese, just exposure to EVB. But also every one had exposed to EBV and every one has EVB in his body. Who develops NPC may depends on secondary factors like immune systems.
. Side effects of Head and Neck radiation:
Dry mouth, loss taste, bad teeth, bad gum disease, lacerated throat, thick muscus and saliva, glued esophagus, bacteria infection, infection of sinus, hair loss, nose hair loss causing breathing problem, lung problem, pain in head and neck and throat, cannot eat , cannot swallow saliva, cannot drink, need tube feeding, burnt skin, stoned mandible and stone teeth, TMJ problem. etc. (It is necessary to fix your teeth by dentist before radiation. After radiation, dentist cannot drill or remove any teeth. If they try, dentist may break the jaw.). Chemo makes patient vomit,painu. When I vomit, gastric acid flows up and eat away skin in esophagus. This makes subsequent swallowing, eating drinking pain, every bite, every swallow. Also medicine make me sleepy, confuse of when I am full, or hungry. I rely on my wife to monitor how much I eat, how much I vomit, how much and when last I drink. And she forces me to eat and drink correct amount at correct time.
. Other possible carcinogens:
from fermented soy bean curd (fuyu), pickled fermented vergetable (soonchoy), fermented salted shrimp paste, Chinese herb medicine. peking duck etc.
People I know had NPC:
As of 4/2000
1. Tai Ming Shoo, 1974 radiation, reoccured 1979, deceased.
2. Sister of Ste Leung, 1970 radiation, 1990 deceased of ovarian cancer.
4. Mr. Lin , 1975 radiation, still survive.
5. Mr. Sam Kwong, 1995 radiation, still survive.
6. Mr. Soo, 1998 radiation, still survive.
7. Friend of Mr. Tseng, 1982 radiation, still survive.
8. Friend of Mrs Wai-ping, 1990 radiation, still survive.
9. Friend of Karen Wong from Geocities, assume survive.
10. Dad of K. Le from USENET discussion, assume survive.
11. Patient of Dr. Paul Doda, 1990 radiation, still survive.
12. Mrs Liu, refer from Am Cancer Soc CCNC, 8/00, ongoing.
13. Monaj, from Alt.support.cancer, stage 4 ,10/2000.
14. L. Aubert www.geocities.com/cmyma/LADoctorletter.html.
Prevention:
Avoid other people who are sick-coughing. Avoid fish heavily salted, avoid preserved foods, avoid salt, avoid hot dogs, SPAM, or canned foods, avoid getting cold, eat a lot of fresh fruits, fresh vegetable, exercise, get fresh air, take vitamin C etc.
Avoid contamination from other people saliva, other people coughing, avoid chopstick eating from common dishes, avoid kissing, avoid other people coughing, keep healthy, exercise 30 min daily. , Rinse your nose with clean water baking soda (NeilMed sinus rinse kit) to keep Epstein barr virus away, do a EP virus blood test every 5 years, and get EP virus vaccine to develop antibody if you are high risk (born in Canton area with salt fish diet and family member has NPC). EBV is normally saliva borne, surface borne, not much of air borne except through mist water molecules. Since EBV is saliva borne, it is everywhere on surface, on table, door knobs, rails etc. Wash hands every 2 hours to avoid EBV. Use napkins, forks, spoons toeat, even with hamburger, potato chips, donuts etc. Avoid eating Peking Duck dish. Peking duck dish sometimes is prepared by chef using mouth to blow air (and saliva) into belly of the duck to make a balloon shape as a preparation process.
PROGNOSIS: if detected early in stage 1,2, survival is high 95% over 5 yrs.
if detected late, then it may spread through lumph node to eyes, kidney, lever, and bone, and legs.
Reference:
1. Book "Nasopharyngeal Carcinoma" by Dr. CA Van Hasselt & Dr. Alan Gibb, of Hongkong Queen Mary Hospital, Lib Congress 962-201-833-5, US$90.00
2. Map of distribution , by Andrew David Cliff & Peter Hagget, Atlas of Disease distribution , Angalytic Approaches to Epidemiological Date ( Oxford & New York: Basel Blackwell, 1988) www.digital.geog.umn.edu/geogdecs/courses/5411/map11.htm
3. B. Bolviken "South China water/ soil content low in magnesium, calcium, strentuim, while high in thorium, nitrate, uranium cauing NPC" Cancer Detection & Prevention 1998, 22. email: [email protected]
4. NOVA video "Cancer Detectives of Lin Xian" PBS, Oct 10, 1980, 1-800-949-8670, identify high cancer rate in village of Lin Xian, China, due to high level of nitrate in water, plus the method of cooking concentrating the nitrate in the food, causing cancer.
5. "Cancer" by Lisa Yount, Greenhaven press, San Diego, 2000. Summary: Dr. Bert Vogelsten of John Hopkins University , Balitmore, Mryland identify cancer problem from immune system, virus, DNA breke down, Defect gene + trigger damage. Dr. Alfred Knuden 1970 found cancer caused by missing chromosome 13. Dr. Bert Vogelsten 1987 found cancer is caused by missing chromosome 17, 18, 11,5 Latest research shows "Environment and genetic changes" send normal cells into benigh grown as stage 1. Later "trigger changes" make bengin growth into out of control growth.-- "Two Hits Causes"
6. "Cantonese-style salted fish as a cause of nasopharyngeal carcinoma" by Dr. MC Yu, Dr. JH Ho, Dr. SH Lai, Dr. BE Henderson Cancer Res 1986 Feb; 46(2):956-61. This report linked NPC to salted fish when digested at young age (0-6). Later it manefested as NPC at age 50-60.
7. "Epstein-Barr Virus" , see www.science.org.au/nova/026/026key.htm.
. If you have any more info on others, please email [email protected].
Nasopharyngeal Carcinoma
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Nasopharyngeal Carcinoma
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. I am a victim of NPC, this is my experience:
. I am 48 Chinese male, (2000), doctor, DDS, previous good health, nonsmoker, nondrinker. I immigrated from Hongkong to US at age 13. It was verified from my mother I was fed with salted fish at age 2. April 2000, I was hit by flu, possible Epstein Barr virus. I discovered I had a 2 cm lump at my right lymph node below mandible. I diagnosed it NPC. It was verified with MRI, ENT MD,endoscope exam,& biopsy in surgery room. I started chemo/radiation treatment at University of California Davis Medical Center on 5/29/00.
6/10/00.. I have problem eating. My saliva turns so dry that it is mucus. It glues my esophagus together. This makes swallowing of saliva difficult. I am losing 5 kilo per day. My MD is getting panic. Also my throat is infected by Candidias bacteria, causing pain. Doctor prescribes ketaconazoles 200 mg, one tablet daily. I have to stop working. I eat every 10 minutes, 4 times each hour. I drink Ensure, and supplement drinks every hour. Also I had irrigated my nose with salt/ baking soda/ hydrogen peroxide every hour. Also I use 1% Lidocaine 1:100000 epi solution mixed with mylanta half and half to rinse mouth (UCD mouth wash). I use H2O2 to irrigate my right ear also to remove the exudate from NPC.
6/29/00... My neck has been burnt to a degree that is itching, painful, looks like skin of a dead snake, or elephant skin.
7/24/00... I finished my radiation treatment. Everything is back to normal. I am able to eat, drink, swallow, able to go back to work. My survival is estimated at 80% for next 5 years.
7/4/01..1 year check, MRI normal, naso-scope looks normal, palpation on neck normal. MRI shows a little scar tissue, naso-scope shows moist, a little dilated blood vessel, normal size of nsopharyngeal, neck lymph-node no bulge, but roateing neck, the node still feel prominent. But negligible. Conclusion : clear and normal. Future monitor : 1year later.
Dec 20,2001 Found that right lymph node small lump still exist and biospy showed maligant. Surgery done to remove the nerve, remove the muscle, and a vein to get to the lymph node and remove the lymph node. All clear afterward.
5/21/2004 update , still okay with recall examination.
3/4/2007 update, still okay.
8/1/2008 update: not okay. routine examination: cough after 30 minute eating big dinner. X-ray show mass,(clear last year) CAT scan show mass at lung. diagnose: NPC metastasized to lung. stage 4. treatment: pallative treatment chemo cis-Platin, F5U, etc. radiation. Surgery rule out due to large tissue involved. Estimate 6- 12 months to live. It is going to progress and block air passage. I will suffer from infection, and die of pneumonia, lung cancer from npc. Meanwhile, I will continue to do my exercise - jogging, yoga, taichi, eating well.
5/10/09 update: went through chemo cis-platin and 5FU 6 cycle in 6 months. Loss sensation to nerve on toe, feet, and fingers, hand. Remaining nerve on feet and leg cannot support the feeling and weight of my body, thus giving me pain on area above the numbed area. So painful I cannot walk or stand. I am on wheelchair. Also I cough every 30 minutes. When I cough, body muscles squeeze together. This gives me more pain on feet and legs. Also I learned chemo and radiation cannot destroy cancer 100%. Chemo and Radiation works by reducing 1/3 of what is there. Next time, it reduces 1/3 of remaining 2/3. So there is always some left. Physicians can only reduce to where they cannot see it. Reality , it still have 2/3 of whatever small remain. 10 years later, it may flare up again.
6/26/09 Cisplatin did not work. After 6th cycle ,cat scan shows it is stil growing. Now doctors start me with Erbitux. It just give me rash, acne in face.
..Useful TIPS: ..rinse mouth with baking soda for 1 min, then rinse with salt for 1 min, rinse with H2O2 for 1 min. Repeat this every 15 minutes. Eat your foods 2 spoonfuls at the time, wash it down with a lot of water, rest for 2 minutes and repeat with 2 spoons full It takes a lot endurance.
Useful link:
Am Cancer Society
Journal of Ear Nose Throat Medecine
Am Cancer Soc-causes
See:
1. American Cancer Society North California Chinese Chapter
2. PDP Cancer page.
3. University of Pennsylvania Cancer page
4. Woejin Soo ( another NPC victim) page.
Reference:
1. PBS video "Cancer Detectives in Lin Xien" 1986.
2. Book "nasopharyngeal carcinoma".
If question : my email [email protected], Dr. Philip Gin, 2043-D Anderson Rd, Davis, Calif 95616, USA. phone 530-753-8066,, also in web discussion group: Yahoo Group Nasopharyngeal_carcinoma (restricted), , Yahoo Group Nasopharyngealcarcinoma2 (open to public but highly unprotected), and Google user group: alt.cancers. and alt. sci.med. cancers, and
Also yahoo groups "npccancer"
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Description:
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nasopharyngeal carcinoma, causes and treatment
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My join date:
2000-06-28 12:30
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My URL:
http://www.geocities.com/nasopharyngeal/
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