Nasopharyngeal newly diagnosed

soccerfreaks said:

Sorry that you feel that way about the site, HAWVET. I have found it very helpful. There are some problems, for sure, but I am advised they are working on them, and as a software developer myself, I understand what that involves.

In the meantime, I think your response to Paula was mostly right on, except for the initial negativity.

I am head/neck survivor, HAWVET, had half of tongue replaced with part of arm, etc., blah, blah blah

But I have always found that positive attitude overcomes a great deal of hurdles. I think from your response to Paula that you agree.

No platitudes for you though, my friend.

Let me just say this: the lip balms will work IF you combine them with adequate hydration.

You MUST carry a water bottle with you, as you point out, and you MUST carry the lip balm with you. Small price to pay for living, I think.

Re the weight, your response reminded me that I suggested to my rad doc that we market a new diet plan....he didn't go for it.

I don't know from your email why you have difficulty eating, HAWVET, but you are not alone with nutritional problems. I use Jevity in a peg tube and I find that I am back up to fighting weight.

I have mucho problems eating. I am eating salads mostly, and odds and ends. But STILL working on getting everything down. When I can't, I go to the tube.

I am hopeful that you do well, sir/ma'am, and that you get past this with a smile on your face that you can pass on to others.

I don't say that as a hallmark mama (I am a married man) but because I believe that the best thing we can pass on is joy.

Best wishes.

Soccerfreaks

Thanks for your response. I opened my eyes and should not have included remarks of my dislike or anything negative. I should have accentuated on the positive, especially to a person who recently discovered she had cancer. Do not worry as I am smiling on your constructive criticism. I tried to remove my introductory remarks, but I do not think it allows it on this forum.

For your information, I am a “he”. LOL. I give credit to all us cancer survivors and still around. I do not feel disappointed because of the after effects since I have read not only here, but elsewhere of others who have far more severe problems. When I see a severely disabled person, I frequently remark to the wife that I should be happy in my present condition.

Am not trying to be negative, but I do believe the results of you being a head/neck survivor is much more severe than mine. Yet, I see that you too have a very positive outlook on life.

Johnny

Hi, my name is Ted and I had NPC Oct 1999. I had C&R, chemo & radiation. Cisplatin followed by 5FU. I had radiation everyday for 2 months. I got burned on the neck by teh radiation and had to use aquapure. I puked from 6am in the morning, every 2 hours, till 1 or 2 am at night. I slept sitting up, proped up by pillows, since it was easier to pop out of bed to the bathroom sink, puke my guts out & sit back down in bed. No one ever told me about drinking ensure. It is easy to puke up ensure, since it dosen't sting. I was stage 3 and was given 3 months to live. I was given Cats and MRIs. During the C&R, I was loosing wt, the doc thought I'm not stabilizing and they'll install a g-tube. I said I was fine, I don't need a g-tube, I just need to stop puking. After the 2 monhts of torture, I healed for 2 weeks and then got 6 months of 5FU in a battery pack to wear 24 hr.s. And now back to puking and feeling miserable. During the 5FU it took me 6 or 8 hours to drink 1 tablespon of clean beef or chicken broth. IT took about 2 monhts to get used to cream of wheat, cream of rice. Slowly worked up to adding sbrambled eggs & cream of rice in a blender. My throat was burning from all the puking I had. I lost all my hair. I stayed being a veggie eater for 1 year. slowly added meat. I got a used crock pot and made long cooked chicken, till mushy. The dry mouth is still with me, but thing have changed the last 6 months. About 2 years ago I went to the dentist for a cavity. I found out I needed root canals for all my theeth. I found now that I have Osteo-necrosis of the jaw, due to the radiation. No One ever told me about the after effects of the radiation. The rads killed my saliva glands. If there's no saliva to wash away the bacteria in the mouth, then you get massive tooth decay. That's why you'll get a prescription for prevident. Save some money, brush morning, afternoon and before bed w/ Colgate Total. I brush, what till the toothpaste foam dies down and it's just a liquid in my mouth, spit out the Total, a quick swisch w/ water. The endodontist said I do have a tiny amount of saliva. Try chewing sugarless gum w/ xylitol. for the last 8 months I've noticed an increas in saliva! Don't chew Orbit, it is too soft and becomes very very sticky and soft w/ no saliva. Trident holds it's shape w/ little saliva and w/ some water. Don't worry so much about eating. The rads killed off alot of taste buds, but they grow back slowly. I went from 165 to 123 lb.s in 2 months. I'm now back to 158 to 162 lb.s I try to get back to 156. I feel good at 155. I had my rads from left to right, a full 180 deg. Green tea is good. When you can swallow again, try Ginko Biloba, Melatonin & Vitamin C 500 mg 1/2 hr before bed. The ginko thins the blood, melatonin helps you sleep. You'll loose some of your thinking power. I used to be able to do fourier transforms in a split second and I lost that ability. I've slowly had to train my self back to doing algebra, trig, calculus & diff equations. But I don't feel like I'm calculating like I used to. Still eat alot of greens, spinach helps lessen the ringing in the ears, brocolli, green beans, bell peppers, asparagus. It's taken about 3 years to taste asparagus as asparagus. Don't try lemon, the bottom of your jaw, where the saliva glands used to be, will cramp like a soab, hurt. Don't try foods that will make you pucker and force saliva out... it'll hurt. Chicken, fish, turkey, rice, potatoes, beef heart = low in fat, lean red meet.
Get a room humidifier, you'll be dry in the nasal cavities, a moist room helps. Snif water, hold one nostril and blow out the water & along comes the hard snot. Juice apple, carrots, bananas. Citrus fruits hurt to swallow, due to the acid. I had to use anti-acids, chewables w/ a little water. Go to Big 5 and get a fanny pack w/ 2 water bottles. That's how I always have my water near me. Osteonecrosis was my most recent shock, but I'm over it. Just keep brushing w/ Colgate Total. Limit the sugar. I do chew a few times and swallow quickly; almond joy candy, chocolate kisses, M&Ms, candy. I drink non fat, 1% or 2% milk. Whole milk has alot of fat. Green tea. In the past 3 years I've liked the organic juices from the supermarket, Odwalla. I can drink orange, pinapple, grape, apple. Just remember to drink water to wash out the fruit sugars. I can taste bacon, polish sausages, steak, lamb ... any meat I can taste as usual. I still like cream of rice, wheat and soft cooked eggs. I can pound down any pizza, pasta, donuts, twinkies, zingers, hoho's, but brush and rinse your mouth. Breads & rice cause cavities, since they get between teeth and sit there, No saliva to help wash foods away & you get cavities. have that water bottle at all times. I wake up in the middle of the nite and sip a little water for the cotton mouth. Since my C&R, I've had ringing in the ears. I got 50% hearing lost, all high end frequencies. It's had to hear women speak, I have to ask 'can you say that again?' . I go to sleep w/ orange ear plugs, the spongy kind of hearing plugs. I like quiche. Brisk Iced tea, strawberry soda, Dr. pepper, any cola, root beer. I don't like cactus cooler , taste wierd. my taste buds not making it right. I can taste any ceral, cookies, fried pork skins, doritos w/ fat free sour cream. salsa, avacado, pickles, oysters, clams. Shrimp makes my mouth dry out, so I have to eat shrimp in a clam chowder. Get s Slow Cooker from the thrift store and slowly, slowly get used to eating stews, potatoes, carrots, brocolli and chicken broth. Slowly add meat, chicken, turkey, etc. I'm cancer free since Dec 1999. I keep my hair short, crew cuts, I use a flowbee. I got used to short hair after treatment. Any health store has Whey protein mix to beef up. Keep animal fat out of foods, so don't eat the skins. Keep the calories down. Nothing you can do for hearing loss, so live w/ it. Ostenecrosis live w/ it. Vit E & other anit-oxidants. Multi-vitamins, like 1-A-Day. Nothing you can do for hart snot, just snif water and blow stuff out your nose.

Christmas said:

Paula:
I'm another Nasopharyngeal cancer survivor, completed my radiation and chemotherapy March 2003. Don't worry about what's coming. It's different for everyone. But feel free to post your concerns and questions. We'll all try to help. My dental routine includes a Water Pik. Brushing, rinsing, and flossing still does not remove all the food particles because when there's no saliva, everything just sticks. I agree with using a humidifier and sleep half sitting up while you're getting treatment. You will get a lot of mucous clogging you up. It was after treatment that my doctors wanted me to use a syringe to squirt water up my nostrils to keep that nasal area clear and free of gunk to avoid infection. I think that the after effects won't be as severe as those survivors who received treatment many years ago. They've fine-tuned the radation treatment to target more specific areas with proper dosages.

Stay positive. Get through one day at a time. You can worry about the after-effects later.

We're all rooting for you. Let your family and friends help.

Hi Chrismas and everyone w/ NSC experience,

I am on treatment for NSC right now and waiting to start the last 3 cycles of chemo (FU5)in about a couple of weeks. My question is when did you get your taste back, and you can eat solid food properly. My radiation ends about 2 weeks ago. My sore throat did go away about 80% but still bothers me at night when I sleep. When will the mucous clogging disappear, chrismas. Please respond thanks.

Dear Paula,
I was diagnosed with the same thing June 2005. Its pretty scary when a doctor tells you, you have cancer. The best news he gave me though was that its usually 100% curerable. That made things a little better. Mine had spread down to my lymph nodes in my neck on both sides. They said surgery was really not an option. They decided that a concentrated dose of radiation on my nasal area and my neck would be the best. They also had me go through chemo exactly what you are doing. Radiation was ok, except it burned my neck area, which was expected. Get Aquaphor which helped me when the skin got dry and cracked. It's like a bad sun burn. Don't worry it heals fine, there is just a deeper tan line around your neck. As far as Chemo, well that was not great I won't lie to you. I got sick as expected it wasn't pleasant but if I have to do it again strap me in. I had the feeding tube put in my stomach because the radiation closed off my throat. They said try and use your mouth as much as you can, use it or lose it. They tried the feeding tube through the nose but that came out when I got sick and it wasn't pretty. They due have a clinical study for people diagnosed with Nasapharyngeal Cancer. I was in it. You lose your ability to produce saliva and your taste buds will go by the wayside. My saliva has come back some, but I get dry if I talk too much, keep a lot of water around. My taste buds have changed, I eat mostly chicken now, can't due steak or certain other meats because of dryness. One thing I did notice from the Chemo you may have a numb feeling in your arms and legs from your elbows down and your knees down. My Chemo doctor was also asking me about my hearing and everything was fine until after the last time I saw him and he said all is good I don't need to see you and a week later my hearing went. Funny thing It's like my warranty ran out,HA HA. Well after all this, the good news all is well. I deal with the small things and go to my check-ups every three months. I will say I also lost weight which for me was great, not the best way to go on a diet.

paula002 said:

Hello everyone,

Thanks for all the replies. Very appreciated and helpful. I have answered all of you directly.

I just finished my Cisplatin treatment and this coming Tuesday I will be done with my radio.
Things have been going relatively well.

I did hear that my next chemo treatment, the 5FU will be combined with a lower dosage of Cisplatin.
I was under the impression that it was just 5FU for the last treatment and not a combination.
Can anyone clarify me on this subject?

All the best and take good care,

Paula

Hi Paula,

You are right. It's a combo 5FU w/ lower dose of Cisplatin for 3 cycles with 4 weeks in between.

TLWilliams said:

Dear Paula,
I was diagnosed with the same thing June 2005. Its pretty scary when a doctor tells you, you have cancer. The best news he gave me though was that its usually 100% curerable. That made things a little better. Mine had spread down to my lymph nodes in my neck on both sides. They said surgery was really not an option. They decided that a concentrated dose of radiation on my nasal area and my neck would be the best. They also had me go through chemo exactly what you are doing. Radiation was ok, except it burned my neck area, which was expected. Get Aquaphor which helped me when the skin got dry and cracked. It's like a bad sun burn. Don't worry it heals fine, there is just a deeper tan line around your neck. As far as Chemo, well that was not great I won't lie to you. I got sick as expected it wasn't pleasant but if I have to do it again strap me in. I had the feeding tube put in my stomach because the radiation closed off my throat. They said try and use your mouth as much as you can, use it or lose it. They tried the feeding tube through the nose but that came out when I got sick and it wasn't pretty. They due have a clinical study for people diagnosed with Nasapharyngeal Cancer. I was in it. You lose your ability to produce saliva and your taste buds will go by the wayside. My saliva has come back some, but I get dry if I talk too much, keep a lot of water around. My taste buds have changed, I eat mostly chicken now, can't due steak or certain other meats because of dryness. One thing I did notice from the Chemo you may have a numb feeling in your arms and legs from your elbows down and your knees down. My Chemo doctor was also asking me about my hearing and everything was fine until after the last time I saw him and he said all is good I don't need to see you and a week later my hearing went. Funny thing It's like my warranty ran out,HA HA. Well after all this, the good news all is well. I deal with the small things and go to my check-ups every three months. I will say I also lost weight which for me was great, not the best way to go on a diet.

Hello , my husband has undergone through 2 rhinoplasty and now he needs a nasal reconstruction surgery. Anybody knows an excelent surgeon on this? Please email me at vale20042005@hotmail.com Im really worried on this
If you can help

digital_works said:

Hi, my name is Ted and I had NPC Oct 1999. I had C&R, chemo & radiation. Cisplatin followed by 5FU. I had radiation everyday for 2 months. I got burned on the neck by teh radiation and had to use aquapure. I puked from 6am in the morning, every 2 hours, till 1 or 2 am at night. I slept sitting up, proped up by pillows, since it was easier to pop out of bed to the bathroom sink, puke my guts out & sit back down in bed. No one ever told me about drinking ensure. It is easy to puke up ensure, since it dosen't sting. I was stage 3 and was given 3 months to live. I was given Cats and MRIs. During the C&R, I was loosing wt, the doc thought I'm not stabilizing and they'll install a g-tube. I said I was fine, I don't need a g-tube, I just need to stop puking. After the 2 monhts of torture, I healed for 2 weeks and then got 6 months of 5FU in a battery pack to wear 24 hr.s. And now back to puking and feeling miserable. During the 5FU it took me 6 or 8 hours to drink 1 tablespon of clean beef or chicken broth. IT took about 2 monhts to get used to cream of wheat, cream of rice. Slowly worked up to adding sbrambled eggs & cream of rice in a blender. My throat was burning from all the puking I had. I lost all my hair. I stayed being a veggie eater for 1 year. slowly added meat. I got a used crock pot and made long cooked chicken, till mushy. The dry mouth is still with me, but thing have changed the last 6 months. About 2 years ago I went to the dentist for a cavity. I found out I needed root canals for all my theeth. I found now that I have Osteo-necrosis of the jaw, due to the radiation. No One ever told me about the after effects of the radiation. The rads killed my saliva glands. If there's no saliva to wash away the bacteria in the mouth, then you get massive tooth decay. That's why you'll get a prescription for prevident. Save some money, brush morning, afternoon and before bed w/ Colgate Total. I brush, what till the toothpaste foam dies down and it's just a liquid in my mouth, spit out the Total, a quick swisch w/ water. The endodontist said I do have a tiny amount of saliva. Try chewing sugarless gum w/ xylitol. for the last 8 months I've noticed an increas in saliva! Don't chew Orbit, it is too soft and becomes very very sticky and soft w/ no saliva. Trident holds it's shape w/ little saliva and w/ some water. Don't worry so much about eating. The rads killed off alot of taste buds, but they grow back slowly. I went from 165 to 123 lb.s in 2 months. I'm now back to 158 to 162 lb.s I try to get back to 156. I feel good at 155. I had my rads from left to right, a full 180 deg. Green tea is good. When you can swallow again, try Ginko Biloba, Melatonin & Vitamin C 500 mg 1/2 hr before bed. The ginko thins the blood, melatonin helps you sleep. You'll loose some of your thinking power. I used to be able to do fourier transforms in a split second and I lost that ability. I've slowly had to train my self back to doing algebra, trig, calculus & diff equations. But I don't feel like I'm calculating like I used to. Still eat alot of greens, spinach helps lessen the ringing in the ears, brocolli, green beans, bell peppers, asparagus. It's taken about 3 years to taste asparagus as asparagus. Don't try lemon, the bottom of your jaw, where the saliva glands used to be, will cramp like a soab, hurt. Don't try foods that will make you pucker and force saliva out... it'll hurt. Chicken, fish, turkey, rice, potatoes, beef heart = low in fat, lean red meet.
Get a room humidifier, you'll be dry in the nasal cavities, a moist room helps. Snif water, hold one nostril and blow out the water & along comes the hard snot. Juice apple, carrots, bananas. Citrus fruits hurt to swallow, due to the acid. I had to use anti-acids, chewables w/ a little water. Go to Big 5 and get a fanny pack w/ 2 water bottles. That's how I always have my water near me. Osteonecrosis was my most recent shock, but I'm over it. Just keep brushing w/ Colgate Total. Limit the sugar. I do chew a few times and swallow quickly; almond joy candy, chocolate kisses, M&Ms, candy. I drink non fat, 1% or 2% milk. Whole milk has alot of fat. Green tea. In the past 3 years I've liked the organic juices from the supermarket, Odwalla. I can drink orange, pinapple, grape, apple. Just remember to drink water to wash out the fruit sugars. I can taste bacon, polish sausages, steak, lamb ... any meat I can taste as usual. I still like cream of rice, wheat and soft cooked eggs. I can pound down any pizza, pasta, donuts, twinkies, zingers, hoho's, but brush and rinse your mouth. Breads & rice cause cavities, since they get between teeth and sit there, No saliva to help wash foods away & you get cavities. have that water bottle at all times. I wake up in the middle of the nite and sip a little water for the cotton mouth. Since my C&R, I've had ringing in the ears. I got 50% hearing lost, all high end frequencies. It's had to hear women speak, I have to ask 'can you say that again?' . I go to sleep w/ orange ear plugs, the spongy kind of hearing plugs. I like quiche. Brisk Iced tea, strawberry soda, Dr. pepper, any cola, root beer. I don't like cactus cooler , taste wierd. my taste buds not making it right. I can taste any ceral, cookies, fried pork skins, doritos w/ fat free sour cream. salsa, avacado, pickles, oysters, clams. Shrimp makes my mouth dry out, so I have to eat shrimp in a clam chowder. Get s Slow Cooker from the thrift store and slowly, slowly get used to eating stews, potatoes, carrots, brocolli and chicken broth. Slowly add meat, chicken, turkey, etc. I'm cancer free since Dec 1999. I keep my hair short, crew cuts, I use a flowbee. I got used to short hair after treatment. Any health store has Whey protein mix to beef up. Keep animal fat out of foods, so don't eat the skins. Keep the calories down. Nothing you can do for hearing loss, so live w/ it. Ostenecrosis live w/ it. Vit E & other anit-oxidants. Multi-vitamins, like 1-A-Day. Nothing you can do for hart snot, just snif water and blow stuff out your nose.

April 13, 2007 re:Nasopharyngeal
In 1996 I had 5fu, cisplatin and 35 rads but lucky my tumor was in hypopharynx so I still have fair saliva. I wake up every hour or so with dry mouth and also have to pee so get up, drink a little, pee and go back to bed. I think the lack of good sleep messes with my brain and memory. I wondered why I couldn't hear my wife and children and sermons and you explained it. Thanks. I also appreciate all your eating and weight loss struggle. I dropped 16 lbs. during my chemo phase, and it was because of stomatitis. I tried to keep moving and do some exercises thinking that would build muscle but it didn't help much. Once I finished treatment I stepped up the exercise and did gain and build some muscle though still not very quick. My best effort has been in deepening my faith in God and Jesus. I have never been a worrier and if something seems too tough just ask Jesus to handle it. I got ran over by a trailer in May and since I was heading for church at the time, my angel lifted part of the weight so I just got bruises and a torn pants. I'm 72 yrs. old so getting a little slow from age but know the treatment also took it's toll. If I had to do it again I'd ask for a lot less chemo and rely more on prayer.

naseopharnyx
Hello paula
my husband was diagnosed 7 yrs ago with dysplasia to naseopharnyx and was stage Iv aggressive unknown primary tumor. He had Lymphnectomy and then 8 weeks of chemo and radiation. Immediately after the last radiation I had him treated in Hyperbaric Oxegen to heal the burns inside the throat from the radiation...I highly recommend this-may want to line it up a head of time. Also Please get the PEG tube. My husband went from 160 to 107 lbs even with the tube. He has a high metabolism naturally so it was hard to keep the weight on him even with 6-8 feedings a day.Stay away from Ensure and Jevity _they are full of sugar_. Instead get some whey protein and mix with your foods in the blender. We used Immunopro protein powder from Metagenics and Jay Robbs Whey protein which do not have any sugar in them...but taste good. They are sweetened with stevia. Cancer loves sugar and feeds on it. Try to supplement your diet with Flax oil and Fish oil and a very good multi vitamin from a reputable company at a health food store.
My prayers are with you.... Also for fatigue and to fight the cancer take Green tea extract in water every day.You can pick it up a a health food store. American Gingseng also helps with fatigue after treatment. Ginseng was tested at MD Anderson Hospital in Houston Tx for fatigue in cancer survivor and they found 1,000-2000mg helped them to have a more normal energy level. My husband uses both the green tea and the American Ginseg every day.
Hugs