Nasopharyngeal cancer
Hey folks,
I was searching for forums and support groups as I got diagnosed recently with nasopharyngeal cancer (squamous cell carcinomA). They say it's advanced local and I'm not entire sure what that means in terms of prognosis but it has spread to both sides of the lymph nodes on my neck. No distance metastasis. Will be getting chemo and radiatio in two weeks. Anyone else with the specific type of cancer cause it seems rare?
Comments
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welcome
Ag123,
Welcome to the H&N form, sorry that you are here. Some of my favorite H&N members are NPC survivors and with any luck they should respond.
In terms of prognosis, your outlook is very good for successful treatment.
Many of us have had lymph nodes involved. For many of us, swollen nodes signaled danger.
There are a number of side effects you may get from rads and chemo, but there are ways to handle most.
Good luck,
Matt
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Phrannie will check in soon
Phrannie is one of the regulars around here. She is on an extended vacation but I am sure she will check in soon. She had NPC several years back and is here and living the good life.
She will answer any questions you may have. She is a great friend here and very knowledgable about the NPC.
Start eating lots of food, put on some weight and keep yourself hydrated. Keep up in here. Brings us your worries, questions, anthing. This group is the shoulder for you to cry on.
Sandy
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I'm here!!I
Still on vacation, but needed to check in and see what everybody is doing.
First...yes, NPC is rare....except in China, and men usually get it....so there ya go...I'm have no oriental blood...and I'm not a man. The chances of the NPC....the actual rumor on the nasopharynx coming back.....is rare, also (wish my Onc would have told me that originally....would have saved me a lot of worrying). I had one hellacious node on one side of my neck, and a smaller one on the other side that I didn't even know about till the PET scan. I'm still here kicking it!!
Where things can get dicey with NPC...is....tho it's treated almost exactly like BOT, or tonsil cancer...or one of the other HNCs....there is something a little more nasty about it (it's SCC, but either it's a subset of SCC or maybe it's the location) but we get an extra dose of chemo. I started out with 3 large doses of cisplatin every 3 weeks...coinsiding with 35 rads. When that was over I got 3 more cisplatin treatments , three weeks apart....but they added a 4 day fanny pack of 5FU to go along with it.
There are a number of other people here who had NPC and are still here to tell about it. If I have learned anything on this board....the number one thing is....one day at a time. The prognosis for any type of HNC is good these days. Just hang onto your seat....the roller coaster is about to depart.
p
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Hello Phrannie51,phrannie51 said:I'm here!!I
Still on vacation, but needed to check in and see what everybody is doing.
First...yes, NPC is rare....except in China, and men usually get it....so there ya go...I'm have no oriental blood...and I'm not a man. The chances of the NPC....the actual rumor on the nasopharynx coming back.....is rare, also (wish my Onc would have told me that originally....would have saved me a lot of worrying). I had one hellacious node on one side of my neck, and a smaller one on the other side that I didn't even know about till the PET scan. I'm still here kicking it!!
Where things can get dicey with NPC...is....tho it's treated almost exactly like BOT, or tonsil cancer...or one of the other HNCs....there is something a little more nasty about it (it's SCC, but either it's a subset of SCC or maybe it's the location) but we get an extra dose of chemo. I started out with 3 large doses of cisplatin every 3 weeks...coinsiding with 35 rads. When that was over I got 3 more cisplatin treatments , three weeks apart....but they added a 4 day fanny pack of 5FU to go along with it.
There are a number of other people here who had NPC and are still here to tell about it. If I have learned anything on this board....the number one thing is....one day at a time. The prognosis for any type of HNC is good these days. Just hang onto your seat....the roller coaster is about to depart.
p
Hello Phrannie51,
I am a male who received a Squamous cell Carcenoma diagnosis on my 63 birthday. No cake that day
. Had operation to bulk out a large (2 inch x 1.5 inch x 1.5 inch) tumor between my spine and my pituitary gland. I've current finished 23 of 35 radiation treatments and 2 of 3 planned Cisplatin treatments, each containing high-dose CISPLATIN 100 mg/m2 . My biggest issue is the mucose tissue and throat pain have made it essential impossible for me to eat or drink. No food for the 4 days and scheduled for a GI tube in 2 days. This is certainly tough and I have a healthy respect for those who have gone before me. Few questions:How to deal with mucous and swallowing?
How long will it be before before my throat will be 50% healed, then fully healed?
Any other survival tips that you care to share?
Thank you very much for your time and support.
Joe
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NPC survivor
Welcome AG123- I was diagnosed with NPC 4 years Ago. The Tumor was the size of a walnut and I had Lymph node involvement on both sides of the neck but no distant metastisis. I had the exact same treatment as Phrannie51 and have been NED ever since. It was a rough treatment and I lost 70 lbs but I'm back to my normal weight with a few annoying side effects. I lost some hearing in my left ear and have peripheral neuropathy in my hands and feet from the Chemo but all things considered, I'm happy to be upright and very glad the treatment was successful. Consider this a speedbump in life and know that these Cancers are beatable.
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Hey Joe....rJoe Rock said:Hello Phrannie51,
Hello Phrannie51,
I am a male who received a Squamous cell Carcenoma diagnosis on my 63 birthday. No cake that day
. Had operation to bulk out a large (2 inch x 1.5 inch x 1.5 inch) tumor between my spine and my pituitary gland. I've current finished 23 of 35 radiation treatments and 2 of 3 planned Cisplatin treatments, each containing high-dose CISPLATIN 100 mg/m2 . My biggest issue is the mucose tissue and throat pain have made it essential impossible for me to eat or drink. No food for the 4 days and scheduled for a GI tube in 2 days. This is certainly tough and I have a healthy respect for those who have gone before me. Few questions:How to deal with mucous and swallowing?
How long will it be before before my throat will be 50% healed, then fully healed?
Any other survival tips that you care to share?
Thank you very much for your time and support.
Joe
I wish I had answers to all your questions, but alas....we are all different in our reactions to things. I had a tube put in before treatment started because I was already thin (I weighed 77 lbs when it was over!). I really think it makes a difference which nodes are getting microwaved, as to how much throat pain a person suffers. When I was getting rads my Onc was giving me a drug called Amifostine to try and salvage my saliva glands. It didn't do a great job on that....but every person I know who had Amifostine escaped the mucous problem.
Also, I felt guilty about not having a very sore throat when everyone else here was suffering so badly. I didn't use my tube once during rads. I couldn't taste anything and I had no spit...but pain was pretty minimal. THEN....the cisplatin and 5FU chemo started and things went to hell in a hand basket. Mouth sores kept me on tube only food for 4 months....
I used L-glutamine mixed with water almost exclusively for hydration. You can get it at the health food store....I kept a 1 liter bottle of soda/salt mix on the counter and rinsed my mouth constantly. I also had Magic Mouthwash to numb my mouth and throat before drinking water. You have to swallow come hell or high water every day once the tube gets placed Or you could lose the ability. Pour copious amounts of water down your tube....dehydration is a problem for lots of us during treatment.
One day at a time!! Remember that....you only have to get through the day you're in.
Has your Onc mentioned anything about post radiation chemo?
p
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Hi Phrannie51,phrannie51 said:Hey Joe....r
I wish I had answers to all your questions, but alas....we are all different in our reactions to things. I had a tube put in before treatment started because I was already thin (I weighed 77 lbs when it was over!). I really think it makes a difference which nodes are getting microwaved, as to how much throat pain a person suffers. When I was getting rads my Onc was giving me a drug called Amifostine to try and salvage my saliva glands. It didn't do a great job on that....but every person I know who had Amifostine escaped the mucous problem.
Also, I felt guilty about not having a very sore throat when everyone else here was suffering so badly. I didn't use my tube once during rads. I couldn't taste anything and I had no spit...but pain was pretty minimal. THEN....the cisplatin and 5FU chemo started and things went to hell in a hand basket. Mouth sores kept me on tube only food for 4 months....
I used L-glutamine mixed with water almost exclusively for hydration. You can get it at the health food store....I kept a 1 liter bottle of soda/salt mix on the counter and rinsed my mouth constantly. I also had Magic Mouthwash to numb my mouth and throat before drinking water. You have to swallow come hell or high water every day once the tube gets placed Or you could lose the ability. Pour copious amounts of water down your tube....dehydration is a problem for lots of us during treatment.
One day at a time!! Remember that....you only have to get through the day you're in.
Has your Onc mentioned anything about post radiation chemo?
p
Hi Phrannie51,
Thank you for the information. Likely too late for me to save saliva glands. No sweet at all and overpowering salt taste.
Our procedures differed as I have been getting concurren chemotherapy every 3rd week. My mouth sores have been there but minor compared to throat. Now have neck burns on exterior, look BBQ'd.
Had my feeding tube for 3 days and getting 500 to 750 cal per day. Will focus on getting liquid as you suggest.
Thank you soo much for advice, one day at a time.
Joe
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treatment
35 rads (70 Gy) and 50 Gy on neck with concurrent Cisplatin over 6 weeks (40 mg), followed by adjuvant 2 sessions (Cisplatin and 5FU).
the adjuvant was interesting. In hindsight, I have no regrets, although doctors' opinions on the nessisity of adjuvant has been split for my staging.
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My Brother Was Diagnosed with NPC :-(
Hi everyone,
I'm happy to have found this forum. It was devastating when we learned just last week that my younger brother has NPC. At first he thought it was just some sore throat, then he also had problems breathing so he suspected it was inflamed sinuses. He went for check ups but nothing was confirmed until last week. He's still on the early stages and we're really praying for his healing. His weight has dropped a lot and he looks very weak. But now that it's clear what he's battling with, although not easy to accept at all, it seems that he has become more accepting and open to treatment.
I love reading your comments because they are all very positive and you all give me hope for my brother. I'm still scared about the mouth sores and all the side effects, but I know in my heart that God will grant him the strength to surpass all the pain. I know my brother will endure anything and will be thankful just to stay alive and with his loved ones. I am praying for all of you, too.
BTW, what's a magic wash? do i get this from the store? I live in the Philippines.
Bambi
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welcomeZatanna2012 said:My Brother Was Diagnosed with NPC :-(
Hi everyone,
I'm happy to have found this forum. It was devastating when we learned just last week that my younger brother has NPC. At first he thought it was just some sore throat, then he also had problems breathing so he suspected it was inflamed sinuses. He went for check ups but nothing was confirmed until last week. He's still on the early stages and we're really praying for his healing. His weight has dropped a lot and he looks very weak. But now that it's clear what he's battling with, although not easy to accept at all, it seems that he has become more accepting and open to treatment.
I love reading your comments because they are all very positive and you all give me hope for my brother. I'm still scared about the mouth sores and all the side effects, but I know in my heart that God will grant him the strength to surpass all the pain. I know my brother will endure anything and will be thankful just to stay alive and with his loved ones. I am praying for all of you, too.
BTW, what's a magic wash? do i get this from the store? I live in the Philippines.
Bambi
Bambi,
Welcome to the H&N forum, sorry you are here and good sisters are great to have.
Magic Mouth Wash is a concoction made up by a compounding pharmacy that soothes the discomfort one feels in their throat, tongue and mouth. The content varies in strength and mixture. Mine was a very good Oregon Vintage, which I exploited for maximum comfort. Some have no luck with the stuff, I was not one of them. I sipped, swished and swallowed 6 bottles. I used to take a chug in the parking lot prior to rads. It ended up being one of my top 3 items for surviving treatments, but that is me.
Matt
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Step-dad was just diagnosed with NPC
Hi everyone. My name is Reagen and I'm nineteen. My step-dad is 53(?) and was just diagnosed with NPC. Monday we find out the stage. If anyone has any advice for me, I sure need it. I'm at a loss on even how to approach him now that he has a rare type of cancer. This man has survived two aneurysms and didn't skip a beat... I think this is getting to him though. Thanks in advance... this is my first brush with cancer and it's confusing and scary.
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welcome, it is scaryreagen_smith said:Step-dad was just diagnosed with NPC
Hi everyone. My name is Reagen and I'm nineteen. My step-dad is 53(?) and was just diagnosed with NPC. Monday we find out the stage. If anyone has any advice for me, I sure need it. I'm at a loss on even how to approach him now that he has a rare type of cancer. This man has survived two aneurysms and didn't skip a beat... I think this is getting to him though. Thanks in advance... this is my first brush with cancer and it's confusing and scary.
reagen_smith,
Welcome to the H&N forum, sorry about yourstep-dad, but IT IS NOT the end of the world. He will most likely receive treatments similar to all of us and if he is lucky he will not skip a beat.
Your best chance for response is to start a new thread and introduce yourself and your step-dad.
For many it is the first step down the cancer lane, it is not like simply knowing someone with cancer, it is a lot more personal and in your face.
In the meantime, you can let him know you found this site full of like-minded people. If he chooses a different path that is fine, this site is not for everybody, but you may return to find out more information if you want too.
Matt
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ThanksCivilMatt said:welcome, it is scary
reagen_smith,
Welcome to the H&N forum, sorry about yourstep-dad, but IT IS NOT the end of the world. He will most likely receive treatments similar to all of us and if he is lucky he will not skip a beat.
Your best chance for response is to start a new thread and introduce yourself and your step-dad.
For many it is the first step down the cancer lane, it is not like simply knowing someone with cancer, it is a lot more personal and in your face.
In the meantime, you can let him know you found this site full of like-minded people. If he chooses a different path that is fine, this site is not for everybody, but you may return to find out more information if you want too.
Matt
Thanks for the advice on creating a new thread- I've done so. I doubt my step-dad will jump at the idea of a forum but I'm sure my mother will. Perhaps, in time, he will seek out other people who have fought NPC and won.
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Thank YouCivilMatt said:welcome
Bambi,
Welcome to the H&N forum, sorry you are here and good sisters are great to have.
Magic Mouth Wash is a concoction made up by a compounding pharmacy that soothes the discomfort one feels in their throat, tongue and mouth. The content varies in strength and mixture. Mine was a very good Oregon Vintage, which I exploited for maximum comfort. Some have no luck with the stuff, I was not one of them. I sipped, swished and swallowed 6 bottles. I used to take a chug in the parking lot prior to rads. It ended up being one of my top 3 items for surviving treatments, but that is me.
Matt
Thank you for your time, Matt, and the info on Magic Mouth Wash. I've been reading about it, too. Hope it works for my bro the way it worked for you.
Bambi
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Taste Buds and Dry Mouth
Hi All,
It's me again, more questions. I am now 3 weeks after my last radiation treatment and my tongue and throat sores have reduced to the point where I am again swallow water. I have been off of morphine completely for 2 weeks. My GI Tube has allowed my weight loss to slow down but until I can eat, insufficient caloric intake appears to be an issue. My biggest issue is absolutely no sweet taste. That has been gone since week 2 of the radiation tretments, say 2 months ago. I'd be interested in learning how long after the end of rafiation does it take before ones sense of taste returns?
Also, the dreaded phlegm has given way to dry mouth. This is an improvement for sure. I started using xylimelt with some sucess. I was also wondering how long it takes before the saliva glands are able to normally hydrate the mouth?
Finally, the hair on the back of my head and most of my beard has fallen out or is very thin and fine. How long will it take for hair to start growing normally again?
Thank you,
Joe
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questions 101Joe Rock said:Taste Buds and Dry Mouth
Hi All,
It's me again, more questions. I am now 3 weeks after my last radiation treatment and my tongue and throat sores have reduced to the point where I am again swallow water. I have been off of morphine completely for 2 weeks. My GI Tube has allowed my weight loss to slow down but until I can eat, insufficient caloric intake appears to be an issue. My biggest issue is absolutely no sweet taste. That has been gone since week 2 of the radiation tretments, say 2 months ago. I'd be interested in learning how long after the end of rafiation does it take before ones sense of taste returns?
Also, the dreaded phlegm has given way to dry mouth. This is an improvement for sure. I started using xylimelt with some sucess. I was also wondering how long it takes before the saliva glands are able to normally hydrate the mouth?
Finally, the hair on the back of my head and most of my beard has fallen out or is very thin and fine. How long will it take for hair to start growing normally again?
Thank you,
Joe
Joe,
3 weeks post, you are on your way.
Sweet:
Day one post to never, but generally somewhere in-between. I was on smoothies for 7 months, but was constantly tasting and eating things. True story, sweet corn and sweet tea tasted good from the start. try everything, don’t be shy, try some salt, try some sugar, go to a buffet.
Saliva:
Day one post to never, but generally somewhere in-between. You should get to a place where you can live comfortably with dry mouth. Who knows, maybe you will be lucky one and make it all the way back.
Hair:
My neck has lost 99% of beard hair, most likely to never return.
Life:
New normal, the sooner you get used to it the better. Then you become a H&N member of the abi-normal clan.
Good luck,
Matt
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Matt,CivilMatt said:questions 101
Joe,
3 weeks post, you are on your way.
Sweet:
Day one post to never, but generally somewhere in-between. I was on smoothies for 7 months, but was constantly tasting and eating things. True story, sweet corn and sweet tea tasted good from the start. try everything, don’t be shy, try some salt, try some sugar, go to a buffet.
Saliva:
Day one post to never, but generally somewhere in-between. You should get to a place where you can live comfortably with dry mouth. Who knows, maybe you will be lucky one and make it all the way back.
Hair:
My neck has lost 99% of beard hair, most likely to never return.
Life:
New normal, the sooner you get used to it the better. Then you become a H&N member of the abi-normal clan.
Good luck,
Matt
Matt,
Thank you for sharing your experience. Sounds like patience, and keeping my expections low, is the order of the day. Funny, today I have developed a very "electric tingly fee" on my tongue. The taste of water has changed in 24 hrs. I'll keep patient and keep tasting. Hopefully, I'll get some taste back. Funny, no issue with my sense of smell.
I've had my beard for 40 yrs since I worked in the high arctic. Grown accustomed to it but if it doesn't grow back, so be it.
Cheers,
Joe
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Hi dirtyred
Still here, but I no longer read or comment on the site, because I am the caregiver for my wife who has advanced ALS, and needs 24/7 support (by the way, treatment for NPC looks like picnic comparing with what I am going through right now).
As far as the NPC goes, I don't feel liker I ever had cancer. Normal life, except the above. There are some long term effects, like hearing loss, but totally manageable.
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