nasopharyngeal cancer

Hi moconnor
Kent said it best, your Mom is in for a hard ride, but there is hope and she will make it through with a lot of support from you and others around her. She will need to keep a positive attitude and will need to put her Faith in something if she is religious I suggest God. There are three of us here all with the same type Cancer as your Mon, we will be here anytime to help you with any questions you might have.

Take care God bless and I will keep your mom and you both in my prayers.

Hi Moconnor,
So sorry to
Hi Moconnor,

So sorry to hear about your mom, you both are in my prayers. My husband just finished his treatment for Nasopharyngeal cancer. He had 40 rad treatment and 2 cisplatin chemo treatment. My biggest suggestion would be to discuss a feeding tube in advance with the onc. My husband had to get one midway into treatment when he was already having a difficult time and weak that it was very hard on him. I read on here that some head, neck, face cancer patient will get a feeding tube before treatment begins, when they are fairly healthy and spirits are still high. It might be something to consider. My husband is only 28 yrs old and before being diagnosed with this cancer, always physically active and healthy, never thought the treatment would take such a big toll on him that he would not be able to eat on his own. You both have a difficult journey ahead of you, but know that there is a light at the end of the tunnel and you will get there. Stay strong and positive.

kit0 said:

Hi Moconnor,
So sorry to
Hi Moconnor,

So sorry to hear about your mom, you both are in my prayers. My husband just finished his treatment for Nasopharyngeal cancer. He had 40 rad treatment and 2 cisplatin chemo treatment. My biggest suggestion would be to discuss a feeding tube in advance with the onc. My husband had to get one midway into treatment when he was already having a difficult time and weak that it was very hard on him. I read on here that some head, neck, face cancer patient will get a feeding tube before treatment begins, when they are fairly healthy and spirits are still high. It might be something to consider. My husband is only 28 yrs old and before being diagnosed with this cancer, always physically active and healthy, never thought the treatment would take such a big toll on him that he would not be able to eat on his own. You both have a difficult journey ahead of you, but know that there is a light at the end of the tunnel and you will get there. Stay strong and positive.

Hi KitO
Glad to have you here on CSN, there are about 4 of us here with NPC, we do out best to help and support each other and you are more then welcome here. At one time I thought I was the only person In the USA with NPC but after being here I found there are others who I can share my problems with and get support and help. You are so right about keeping positive; I need to ask something’s about your husband if that is ok. Has he every traveled outside of the US, if so where, and does he eat a lot of salt in his foods, what is his normal diet.

By the way Kent and I are both NPC survivors


Take care, and again welcome to CSN..

Kent Cass said:

Please share
kitO- I am only a 14-month survivor. Hondo is over 7 years. If you care to share your husband's story- you have at least two who are anxious to hear his story, and your's.

And moconnor- do keep us informed on your Mom. If there is anythng we can do to help- all you gotta do is ask. And...

Believe.

kcass

hi hondo & kcass
Thank you so much for the warm welcome. I have actually been around CSN for some time now, searching for any info that could help my husband and has actually seen several posts from you guys and I have to thank you for the encouragement you give to others here. I finally decided to join so that we too can share some insight to others. We have finally seen the light and anxiously waiting for his 3 month appt for a CAT scan, hoping & praying that we have beat this. Knowing that you guys are survivors is truly inspirational.

Here's our story in a nutshell:
My husband is of Asian decent, and apparently NPC is pretty common in Asians, but when we asked our onco. he said it is more common in older Asians who have lived there. Apparently it has something to do with their diet and I'm assuming that is why you ask Hondo. My husband was born in the states, we have been to Asia, Europe, Mexico & the Caribbean. I dont like my food too salty, so since we've met he has adapted some to my diet. When he was first diagnosed, we were told he was in stage 1 and all he would need was 40 rad treatment being that NPC was highly treatable with rad. About 1 wk into treatment, PET scan results showed that he was borderline stage 2 and that was when chemo was recommended. Since he only needed 2 treatments, a port was not put in, it was given through an IV. Each chemo session lasted 8 hrs. We were given the option of breaking up the chemo and giving it in smaller dosage once a wk for 6 wks, but he chose to bite the bullet and take it all at once. He was deathly sick after each chemo for at least 3 days. Lots of bumps in the road but we have finally made it. He has been doing better this wk, physically and emotionally and I can finally sigh in relief.

He finally is able to take in some liquids without the gtube and actually trying to find soft foods that he can tolerate. He only takes a lil' taste and gives up, but atleast he is trying. My question for you guys is how long did it take for you to start eating again, and when did your taste come back? I think thru all this, that was the hardest thing for him, to lose his taste bud. What can I say? The man loves to EAT. Food Network has become our favorite channel in the house.

Hondo said:

kitO
Glad to hear from you and that your husband is doing good, it is truly a blessing to finally get passed the treatment into the healing phase of this NPC. I hope you plan to stay with us here on CSN as there are just not that many of us with NPC and we do our best to help and support each other.

His taste should start to come back about 3 months passed treatment but everyone is different so it could come back sooner or take a little longer don’t let get discourage because it will come back and his brain will tell him food and you will not be able to keep him out of the refrigerator.

In am always searching trying to find out as much as possible about NPC. I did find that asking my doctors gave me nothing as they knew little about NPC only the medical definition of why people get this type of cancer.

I am hoping to try and find if there is some common link. It is true that people in Asian do have a lot more NPC cases then here in the US and I do believe food is one common link. I grew up in Honduras on an Island and we ate a lot of fish, there was no electricity so no refrigeration. All foods had to be preserved with a large amount of salt; even to this day I use a lot of salt in my food (not good). I do know that large amounts of salt intake is a common link for people with stomach cancer

Take care and again I welcome you and your husband to be a part of our family

Epstein-bar
Hondo, were you tested for the Epstein-barr virus? My husband was tested and his count was high, the onco said that testing positive for Epstein-barr does not mean you will get NPC, but there is a link that those diagnosed with NPC will have a flare up of the Esptein-barr. He said that we could use this test more as a flag and I am interested to see at his next appt. if he was to be tested what his count would be, hopefully it will be low.

kit0 said:

Epstein-bar
Hondo, were you tested for the Epstein-barr virus? My husband was tested and his count was high, the onco said that testing positive for Epstein-barr does not mean you will get NPC, but there is a link that those diagnosed with NPC will have a flare up of the Esptein-barr. He said that we could use this test more as a flag and I am interested to see at his next appt. if he was to be tested what his count would be, hopefully it will be low.

KitO

Can’t say I was ever tested for the Epstein-barr virus when I started treatment 8 years ago can’t say that my doctors knew about NPC where I live let along about the virus that can cause this cancer. The world is a different place and the treatment today is so much better. I think I will ask my doctor about this when I see him again, Thanks for the info.

Scambuster said:

Asian occurence
Hi KitO,

I was treated in HK and am aware of the high incidence of Asian folks but it is noted the affect population is mainly Southern Chinese (esp Cantonese) and also of note of the occurrence on 2nd and 3rd generation Chonese who have lived in Western Countries so that poses some question whether it is diet or genetic. My personal thoughts were the habit of many Chinese frequently hack and cough which continually removes the protective mucus in the NP area, exposing the area to continued attack by bacteria and viruses. Eventually this may lead to the epithelial cells being more prone to allow cell mutation. Just my thoughts.

Regarding your husbands recovery, you must measure his improvement in 'weeks', not days as he will be still going through some ups and downs for a while after treatment is finished but he will improve. I alway had thin soup or broth with soft rice (pref brown) and soft veges and what ever else he can manage. Tofu and Scrambles eggs are also good.

I also took a Vitamin type Shake and vitamins to ensure I was getting enough nutrients to help me recover.

Many foods hurt or stung my mouth for a good few weeks but that also improves. I took Glutamine Powder (See earlier posts) which helps heal the mucosa and also would neutralize the stinging I got when trying different foods.

I am now 15 weeks out and eating a lot of things but certain foods have no taste. Salads are always good when he can manage and you can experiment with different dressings. Depending on whether his Salivary glands were affected, he will also experience dry mouth and difficulty eating without some fluids.

Let us know more when you can re exactly when he finished treatment and how he is doing. Also watch for possible signs of depression which is common post treatment and can need intervention.

We look FWD to hearing more from you.

All the best.
Scambuster

Epstein-barr virus
kitO- Epstein-barr virus is Mono. The funny thing about me, prior to the NPC, was how a cold virus would hit me: like Mono. It would, basically, make me dead to the world- typical would be major body aches, and like my whole body was yelling at me to get to bed, and to sleep. That was my history for many years, and then NPC shows-up. I have no Asian history. Does make me wonder about the Epstein-barr virus.

kcass

Scambuster said:

Chronic Fatigue
HI Kent,

Curious if you were ever diagnosed as having 'Chronic Fatigue'? It is common if you have had a combination of these viruses including EBV (also called Mononucleosis), Cytomegalovirus etc. I had Mono way back in college (early '80s) and also a few others and suffered Chronic Fatigue for quite a few years.

This (CFS) is also an indication of a compromised immune system which as we know, can make us more prone to get cancer. I gather it is a post viral syndrome that causes the immune system to play up and not run 100%.

Curious if there are others with a similar history here.

Regds
Scambuster

case study on EBV and Nasopharyngeal Carcinoma
My husband's onco printed us an article from the New England Journal of Medicine, pub in 2001. The case study however was done between 1984-1986 on 9699 Taiwanese Men. Blood samples were examined for IgA antibodies against EBV capsid antigen and neutralizing antibodies against EBV-specific DNase. Their conclusion: IgA antibodies against EBV capsid antigen and neutralizing antibodies against EBV DNase are predictive of nasopharyngeal carcinoma.

If you would like to read more about it
http://content.nejm.org/cgi/content/full/345/26/1877

Thank you everyone for your advice and support. I am happy to say that my husband is doing better each day. He is taking all liquids in by mouth now and only using the gtube for formula and shakes.

Scambuster said:

Chronic Fatigue
HI Kent,

Curious if you were ever diagnosed as having 'Chronic Fatigue'? It is common if you have had a combination of these viruses including EBV (also called Mononucleosis), Cytomegalovirus etc. I had Mono way back in college (early '80s) and also a few others and suffered Chronic Fatigue for quite a few years.

This (CFS) is also an indication of a compromised immune system which as we know, can make us more prone to get cancer. I gather it is a post viral syndrome that causes the immune system to play up and not run 100%.

Curious if there are others with a similar history here.

Regds
Scambuster

Fatigue reply
No- never diagnosed with CFS.
Bit of a story with one episode some 5+ years ago: the cold virus hit me, then, and I went to my regular Dr. He detected something he thought suspicious, and sent me to get a CS. I was well aware of what I was feeling, and how for many years/a long history antibiotics would cause improvement in short order. The CS detected a mass in the bottom of my left lung! Dr. sent me to a Pulmonary Specialist, who talked only doom and gloom, and how difficult it would be to get to the mass because of it's location with a biopsy. I spelled it out for him- that what I was experiencing was just like previous colds, and I talked him into putting me on a serious doseage of antibiotics for a long time. He halved the time, but agreed. I had told him I had no intention of letting him do the biopsy he was proposing, you see.
Some three weeks later I saw a Pulmonary Dr. at a competing hospital in the Quad Cities, and a week later he put me thru a CS, there. The mass had disappeared! And the first Pulmonary Dr. was gonna cut me, and puncture my lung with the surgical biopsy. Called his office to let them know I had been proven right, and he wrong; then went to my regular Dr. with it. He didn't have a lot to say about the way I had played it- going to the competition, and for that competition to prove I didn't need an operation to tap into my lung.

Of note, Scambuster, is that it has been several years since I experienced a cold like that- which for many years it seemed like I got at least once/year. Never fail to get a flu shot, but that was not the cause.
Also, because of the mega-use of antibiotics, I wonder if that might have led to my acquisition of NPC.
And, yes, my Oto/ENT Dr. is affiliated with the competition, which my regular Dr. does not appreciate, but understands, and he continues to be my regular Dr.

Just food for thought.

kcass

ratface said:

I'm EB positive
I am EB positive but was base of the tongue. Perhaps it is a precursor to head and neck cancer period.

EBV and HPV
My diagnosis is stage 4 scc of unknown origin (suspected NPC) and am negative for EBV. I will get a human papilloma virus (HPV) check as there is literature to support it as a cause for NPC and other head and neck scc. HPV is considered a cause for cancer of the cervix, the cells of are similar to those in the throat - interesting.

Best,

Mick