Newly dianogsted with NPC stage3

frank10g

james chambliss said:

Hi
I will tell you this. It's not going to be easy and you yourself will need lots of patients. I had NPC stage III as well. I am 39 and have been cancer free for about 5 months now. I go in for a follow up PET scan in a couple of months. Though still dreaded, i have hope. I tell you these things, because hope is the one thing you need to hold on too. It will be a hard road for both of you, but you can get through it. Several of us here have and life is different, but it's still life. I wish you and your family the best and i hope to hear from your husband as well. Take care friend.



James

Side Effect
Hi Friends,
As you know I too NPC stage 3. Does any of you who have finish treatment experience recurring ear infections? My blocked right ear was the first sign of NPC and now it keeps giving me problem. ENT put tube before treatment and now it has blood coming out every time I clear my throat or blow my nose. ENT gives everything he knows to no results. Any advice, please help!

cartierlee

Hondo said:

Hi Cartierlee

Welcome to the family and glad to have you with us, you have a very interesting story with NPC of both you and your sister having this crap. I too am NPC, got mine back in the last part Nov 2002 just in time for Christmas. I finish treatment in Feb of 2003 and NPC came back again in 2004 had to do radiation a 2nd times with Chemo, almost kill me then it came back again in March 2006 but the last time I did not do any treatment. I am interested on how you are doing after 9 years and what side affects you are having.

Hope you plan to stay
Hondo

Hi Hondo
Thanks for the welcome. I found this site while I was doing some research for my sister who is going into treatment in a couple of weeks. I do plan to stay to try to give support to others like me who was very scare going into treatment and I wish I had someone to talk to during my treatment of what to expect it would have made my treatment a lot more easier.

My wife is a Breast cancer survior also for about 3 years.

I am doing fine after 9 years :-) and aside from some side effects that I have to live with as a result of my primitive and agreesive Chemo and radiation treatment since I was a stage 4. my side effects are:

*Problem tasting - But I enjoy the texture of all the food I eat a lot more.
*Problem smelling - But now there are no food I do not like to eat anymore.
*Buzz in my hearing - But I can choose what not to respond and blame it on that.
*Dry mouth - Which gives me excuse and reason to drink a lot of water which is good for me.
*Teeth Cavities - I gained a new family friend - My dentist.
*Easily catches cold - Gives me great excuse to stay away from all sickos.
*Ocassional back pains from weaker bones and joints - This might be just because I'm getting older.
*Still get tired at times - I get my excused afternoon nap on my day off.

Overall, those are about the only side effects I still have but they no longer borther me anymore. I see them as trade offs - for everything you gain in life, you give something. And I believe gaining "life" is worth giving all of the above; no point of complaining or stop living a good life because of it.

Cartier

cartierlee

frank10g said:

Side Effect
Hi Friends,
As you know I too NPC stage 3. Does any of you who have finish treatment experience recurring ear infections? My blocked right ear was the first sign of NPC and now it keeps giving me problem. ENT put tube before treatment and now it has blood coming out every time I clear my throat or blow my nose. ENT gives everything he knows to no results. Any advice, please help!

Hi Frank10g
Talk to your ENT to see if there are something else in there. Also if you have just finished your radiation. the tissue insode is all dry and burned and can easily bleed so it might be normal. I do not know how long has it been since you finish your treatment so it will help if you let us know.

In the mean time, do talk to your ENT but more importantly; Enjoy Life and Smile every minute since we surviors are all give this "Bonus Time" so make great use of it.

Cartier

HAWVET

cartierlee said:

Hi Hondo
Thanks for the welcome. I found this site while I was doing some research for my sister who is going into treatment in a couple of weeks. I do plan to stay to try to give support to others like me who was very scare going into treatment and I wish I had someone to talk to during my treatment of what to expect it would have made my treatment a lot more easier.

My wife is a Breast cancer survior also for about 3 years.

I am doing fine after 9 years :-) and aside from some side effects that I have to live with as a result of my primitive and agreesive Chemo and radiation treatment since I was a stage 4. my side effects are:

*Problem tasting - But I enjoy the texture of all the food I eat a lot more.
*Problem smelling - But now there are no food I do not like to eat anymore.
*Buzz in my hearing - But I can choose what not to respond and blame it on that.
*Dry mouth - Which gives me excuse and reason to drink a lot of water which is good for me.
*Teeth Cavities - I gained a new family friend - My dentist.
*Easily catches cold - Gives me great excuse to stay away from all sickos.
*Ocassional back pains from weaker bones and joints - This might be just because I'm getting older.
*Still get tired at times - I get my excused afternoon nap on my day off.

Overall, those are about the only side effects I still have but they no longer borther me anymore. I see them as trade offs - for everything you gain in life, you give something. And I believe gaining "life" is worth giving all of the above; no point of complaining or stop living a good life because of it.

Cartier

Hello Tuongvi
Welcome to the board which I believe is the very best for real life discussions for Head and Neck cancer survivors. There are several definitions of a survivor and the one I like best is that if you are alive and have or had the disease, that you are a survivor.

It was in June 1998 that I completed my last treatment for NPC. It was a couple of years later when I was given the "NED" clearance. They are more technically advance so there is greater hope today of being successful in this battle against "C".

You have the right attitude of fight, fight, fight and I do hope that your husband has the same feeling. I too remember the initial shock but that positive attitude will go a long way in seeing you through this time of presumed crisis.

Your role as a caregiver will help your husband be successful in the end. Time will drag, but before you know it, you too will be giving information on this forum.

frank10g

cartierlee said:

Hi Frank10g
Talk to your ENT to see if there are something else in there. Also if you have just finished your radiation. the tissue insode is all dry and burned and can easily bleed so it might be normal. I do not know how long has it been since you finish your treatment so it will help if you let us know.

In the mean time, do talk to your ENT but more importantly; Enjoy Life and Smile every minute since we surviors are all give this "Bonus Time" so make great use of it.

Cartier

ENT
Thanks Cartierlee, I finished radiation 13 months ago. My ear started bleeding in the last couple of months. I talked to my ENT who is sure there's nothing else but inflammation in the middle ear. I just talked to him again a few minutes ago and he said to leave my ear alone. It is uncomfortable because when I leave it alone it feels blocked and sounds around me become annoying. I am starting to accept this as the side effect I have to live with. Hopefully it will get better and I like your look on your side effects. Thanks,
Frank

Hondo

cartierlee said:

Hi Hondo
Thanks for the welcome. I found this site while I was doing some research for my sister who is going into treatment in a couple of weeks. I do plan to stay to try to give support to others like me who was very scare going into treatment and I wish I had someone to talk to during my treatment of what to expect it would have made my treatment a lot more easier.

My wife is a Breast cancer survior also for about 3 years.

I am doing fine after 9 years :-) and aside from some side effects that I have to live with as a result of my primitive and agreesive Chemo and radiation treatment since I was a stage 4. my side effects are:

*Problem tasting - But I enjoy the texture of all the food I eat a lot more.
*Problem smelling - But now there are no food I do not like to eat anymore.
*Buzz in my hearing - But I can choose what not to respond and blame it on that.
*Dry mouth - Which gives me excuse and reason to drink a lot of water which is good for me.
*Teeth Cavities - I gained a new family friend - My dentist.
*Easily catches cold - Gives me great excuse to stay away from all sickos.
*Ocassional back pains from weaker bones and joints - This might be just because I'm getting older.
*Still get tired at times - I get my excused afternoon nap on my day off.

Overall, those are about the only side effects I still have but they no longer borther me anymore. I see them as trade offs - for everything you gain in life, you give something. And I believe gaining "life" is worth giving all of the above; no point of complaining or stop living a good life because of it.

Cartier

Hi Cartier
Sounds like you are doing very well with little side affects after 9 years, wonderful news for NPC cancer. Like you said we are all here to do our best in helping others that is the main reason we all stay. I too know what it was like for me to go through treatment twice with no one to talk to about it, now my life is to help others. I may not always be right in what I say but it is always from the heart.

All the best to you my friend
Hondo

connieprice1

sue5749 said:

know just how you feel
My husband has cancer of the layrnex. He has had 4 cemo treatments and 15 rad treatments. Now he is in the hospital. He cannot swollow has to be on a feeding tube. The docters have to stop all treatments, just can't take no more right now, maybe later? It is very very hard seeing him like this!! I think that I will have to talk to someone soon. It is way to hard going this alone. I have a sister here, we talk sometimes but I find myself staying to myself It's hard to explain. She ask how we are doing I always say "fine". It's very scary for sure, Guess I will have to get some kind of meds or something.

Sue, My wife was in hospital
Sue, My wife was in hospital for 34 days after her 2nd chemo treatment. I like you was really worried whether she would be able to do her last chemo treatment. As things turned out her chemo doctor decided not to give her the last chemo treatment and I was relieved because I was afraid she would not be able to handle it. When she got out of the hospital she started radiation treatments 10 days later and she did her 14th out of 33 today. She lost 14 lbs in the hospital and now she can hardly eat anything solid and her radiation doctor told her if she lost any more weight he will insist on a feeding tube for her. We take all of this one day at a time and if she needs a feeding tube it will be no problem. I will help her with this and I am sure they will have a class to teach me how to do everything. She will need all the energy she can get to WIN this battle. I am worried for you because being the care giver can be very difficult and sometimes you need to talk to someone. Sometimes you may break down and cry and you need a shoulder to cry on. There are many people that have no chance of recovery from cancer and I have talked to many of them and I'm just happy we have some light at the end of this tunnel. I have learned so much from this experience and of course I wish Connie did not have to go through all this, I know we will come out of this much stronger people and I personally have become a better person. Sue I pray you gain the strength to deal with the cards you both have been dealt, Cancer really sucks so just try to take everything ONE DAY AT A TIME. Good Luck, Homer Price

tesa

Hondo said:

Hi Tuongvi

Welcome to the family, sorry to hear about your husband having this stuff but don’t be afraid. I too have NPC and so do a lot of others here on CSN. I was 47 when I first got NPC and I am now 55 so there is life after having it.

Question: do you live here in the US or will you be doing your treatment someplace else. My advice to you right now it to listen to your doctors on what treatment is available in your area. We will all be here to help you both through this.

Take care and keep posting
Hondo

I am new here. My mother was
I am new here. My mother was dx in June. She's 83 and very strong. She had surgery and 6 weeks of radiation. She finished in beginning of Sept. In Nov. her ct scan was fine. Last week she had another done. Her surgeon said all looked fine and would schedule a PET scan for May. Later we went to the radiologist/onc. and she said she's pretty sure it has recurred because there's an area of concern and it is 2.7 cm. I'm so very concerned. She has gained 11 pounds, has energy, and feels much better. We were surprised by this. Where is the best hospital for this kind of cancer? Should we seek treatment outside the US as the asian countries seem to be very familiar with this type of cancer. Please help with advece. We did her treatment in Charleston, SC at MUSC. She's scheduled for a biopsy in 2 days and MRI and to meet with a surgeon cause it may be near that eye

tesa

Hondo said:

Hi Tuongvi

Welcome to the family, sorry to hear about your husband having this stuff but don’t be afraid. I too have NPC and so do a lot of others here on CSN. I was 47 when I first got NPC and I am now 55 so there is life after having it.

Question: do you live here in the US or will you be doing your treatment someplace else. My advice to you right now it to listen to your doctors on what treatment is available in your area. We will all be here to help you both through this.

Take care and keep posting
Hondo

I am new here. My mother was
I am new here. My mother was dx in June. She's 83 and very strong. She had surgery and 6 weeks of radiation. She finished in beginning of Sept. In Nov. her ct scan was fine. Last week she had another done. Her surgeon said all looked fine and would schedule a PET scan for May. Later we went to the radiologist/onc. and she said she's pretty sure it has recurred because there's an area of concern and it is 2.7 cm. I'm so very concerned. She has gained 11 pounds, has energy, and feels much better. We were surprised by this. Where is the best hospital for this kind of cancer? Should we seek treatment outside the US as the asian countries seem to be very familiar with this type of cancer. Please help with advece. We did her treatment in Charleston, SC at MUSC. She's scheduled for a biopsy in 2 days and MRI and to meet with a surgeon cause it may be near that eye

ballerinazh

stage 3 is good news
Like cartierlee said, being able to catch it at stage 3 is indeed great news, especially for the undifferenciated. The 5 year survival rate is really high (80% or maybe higher). The treatment plan is likely to be 35 radiation+concurrent weekly chemo. That was the original treatment plan for my husband, but the doctors decided he was actually stage 4c after the PET scan and changed his treatment plan... Anyway, all you need to worry about is to help him cope with the side effects which for his case is mainly from radiation. People on this board are very helpful, you can always come here for questions, advice and comfort.

cartierlee

ballerinazh said:

stage 3 is good news
Like cartierlee said, being able to catch it at stage 3 is indeed great news, especially for the undifferenciated. The 5 year survival rate is really high (80% or maybe higher). The treatment plan is likely to be 35 radiation+concurrent weekly chemo. That was the original treatment plan for my husband, but the doctors decided he was actually stage 4c after the PET scan and changed his treatment plan... Anyway, all you need to worry about is to help him cope with the side effects which for his case is mainly from radiation. People on this board are very helpful, you can always come here for questions, advice and comfort.

Stage 3
Treatment plan for my sister who is a stage 3 is 35 10 minutes radiation with one dose of chemo every third week which is nothing compare to mine at stage 4d which was 35 doses of 1 hour long radiation and the same amount of chemo evry day with every Monday as my long (6 hours) of heavy chemo. I came out of the treatment feeling like I was going to weight only 10 lbs because I gave out way more than I can take in food and I had no idea that my stomach actually hold that much food and water :-). But anyone who has stage 3 can actually celebrate that fact that you ARE the lucky few who will hardly feel any side effects. The only big thing to remember is put Aloe Gel on immediately after each radiation treatment in the chest, neck area to keep your otter skin from cracking and drying from radiation. I didn't do that and my doctor did not tell me either so I finished the treatment with burn to my skin that they actually fall off. If you keep plenty of Aloe Gel on the skin they would not do that and they will make you feel better.

ballerinazh

cartierlee said:

Stage 3
Treatment plan for my sister who is a stage 3 is 35 10 minutes radiation with one dose of chemo every third week which is nothing compare to mine at stage 4d which was 35 doses of 1 hour long radiation and the same amount of chemo evry day with every Monday as my long (6 hours) of heavy chemo. I came out of the treatment feeling like I was going to weight only 10 lbs because I gave out way more than I can take in food and I had no idea that my stomach actually hold that much food and water :-). But anyone who has stage 3 can actually celebrate that fact that you ARE the lucky few who will hardly feel any side effects. The only big thing to remember is put Aloe Gel on immediately after each radiation treatment in the chest, neck area to keep your otter skin from cracking and drying from radiation. I didn't do that and my doctor did not tell me either so I finished the treatment with burn to my skin that they actually fall off. If you keep plenty of Aloe Gel on the skin they would not do that and they will make you feel better.

Hi cartierlee
My husband was staged 4c for distant bone metastasis in the spine and ribs, and the doctors told us 4c was the highest stage. What was the extent of your metastasis when you were diagnosed as 4d? The doctor told my husband that the metastasis in the bone have a high chance to return in 6 months after the chemo and we were quite upset about it, so it's really encouraging to hear your case. Did you use any alternative/complimentary medicine (such as Chinese herbs) besides the conventional chemo/radiation treatment?
BTW, I showed my husband your post, and he was really inspired by the way you view your side effects:-)

Junshu

Kent Cass

cartierlee said:

Stage 3
Treatment plan for my sister who is a stage 3 is 35 10 minutes radiation with one dose of chemo every third week which is nothing compare to mine at stage 4d which was 35 doses of 1 hour long radiation and the same amount of chemo evry day with every Monday as my long (6 hours) of heavy chemo. I came out of the treatment feeling like I was going to weight only 10 lbs because I gave out way more than I can take in food and I had no idea that my stomach actually hold that much food and water :-). But anyone who has stage 3 can actually celebrate that fact that you ARE the lucky few who will hardly feel any side effects. The only big thing to remember is put Aloe Gel on immediately after each radiation treatment in the chest, neck area to keep your otter skin from cracking and drying from radiation. I didn't do that and my doctor did not tell me either so I finished the treatment with burn to my skin that they actually fall off. If you keep plenty of Aloe Gel on the skin they would not do that and they will make you feel better.

Cartier
I second Hondo's welcome.

I'm a 27-month NPC Survivor (last rad in 4/09). Sounds like you really did go thru the ringer w/treatment. My Chemo was a bit different than most- carried TWO pumps for 96 hours, Cisplatin and FU-5, twice- the first 4 days of weeks #1 and #4. I was told I, basically got 4 weeks worth of the two Chemo drugs in each of those 96-hour times with the pumps, and my mouth was a trainwreck; however, it sounds like they flooded you with the Chemo a lot more than they did me. I was also getting the rads with the Chemo- zapped 20 places/session. Was too sick to get rads in week #5, and started week #6 with a 4-night stay in a hospital, so no rads in #6, either. 4 weeks of Morph and ice, and Jevity feeding tube formula, along with an occasional chopped-up pill. Was your treatment time like that, too? Would really like your opinion on my C&R delivery. Were you in the hospital? Heard, once, that years ago with H&N they did flood the system with Chemo to the degree patients were kept in the hospital, and your time was 9 years ago.

Again, Welcome.

kcass

cartierlee

ballerinazh said:

Hi cartierlee
My husband was staged 4c for distant bone metastasis in the spine and ribs, and the doctors told us 4c was the highest stage. What was the extent of your metastasis when you were diagnosed as 4d? The doctor told my husband that the metastasis in the bone have a high chance to return in 6 months after the chemo and we were quite upset about it, so it's really encouraging to hear your case. Did you use any alternative/complimentary medicine (such as Chinese herbs) besides the conventional chemo/radiation treatment?
BTW, I showed my husband your post, and he was really inspired by the way you view your side effects:-)

Junshu

Ballerinazh
Different Cancer has different stages. I had NPC and 4d is still the rating for the highest stage.
I went thru chemo and radiation treatment only and did not seek any other alternative medicine. I was too weak to do or try anything else anyway.
I myself strongly believe that the best medicine for yourself is actually your attitude and your emotional state. medication can only do so much but in the end it will be YOU that decide if you are going to stand straight up and keep going. If the cancer come back then it comes back. There are nothing you can do about it so only focus on the things that YOU can control which is how you are going to live from this point forward. we can all sit and cry and be sorrow and bring all our love ones stress and sadness or we can take charge and live our life the fullest with fun and meaningful memory weather it is 1 day, 6 month or 60 years. We should all be doing that anyway.
My life did changed after cancer, changed for the better. If I am to die today, I can honestly say there are nothing that I should have done or say and I didn't. In another word, if cancer ever comes back to me and take me from my love ones. ALL my love ones already know they ARE my love ones and that they had spent the last 9 years very meaningfully with me.

One must have the courage to live before they earned the courage to die and if they truly LIVED then dying is nothing to be sad or scare.

Please give your husband a Big Hand Shake and a Big Hug for me and tell him not to waste the next 6 month worrying about what might happen in 6 months. Live Life and trust mordern medicine.

Cartier

cartierlee

Kent Cass said:

Cartier
I second Hondo's welcome.

I'm a 27-month NPC Survivor (last rad in 4/09). Sounds like you really did go thru the ringer w/treatment. My Chemo was a bit different than most- carried TWO pumps for 96 hours, Cisplatin and FU-5, twice- the first 4 days of weeks #1 and #4. I was told I, basically got 4 weeks worth of the two Chemo drugs in each of those 96-hour times with the pumps, and my mouth was a trainwreck; however, it sounds like they flooded you with the Chemo a lot more than they did me. I was also getting the rads with the Chemo- zapped 20 places/session. Was too sick to get rads in week #5, and started week #6 with a 4-night stay in a hospital, so no rads in #6, either. 4 weeks of Morph and ice, and Jevity feeding tube formula, along with an occasional chopped-up pill. Was your treatment time like that, too? Would really like your opinion on my C&R delivery. Were you in the hospital? Heard, once, that years ago with H&N they did flood the system with Chemo to the degree patients were kept in the hospital, and your time was 9 years ago.

Again, Welcome.

kcass

Kent Cass
Kent,

Thank you for the warm welcome.

My Chemo was Cisplatin the whole time except for the last week which they gave me Carboplatin because I was way too week for the strong stuff. I had 7 weeks of Chemo and radiation everyday so 35 doses of each. Every Monday was the worst for me because the Chemo would take 6 hours and the size of the bottle looks like a 2 Litre Coke bottle and not a bag. The other 4 days each week the chemo session would last anout 2 hours but I also have to do radiation for one hour each day. It was not even funny being strapped and bolted down on the mask for a whole hour every day.

I did started my chemo in a hospital because they were not sure how week I would get and if I response to it. After the first treatment they did send me home for the rest. But in hind site, I wish I was in the hospital the whole time because it would have been a lot easier for me and my family. Most importantly they would not have seen me 24 hours per day going through the side effects. It was just as hard for them too.

I think cancer treatment in general has come a long way in a few short years. My opion of your treatment compared to mine is you didn't going through near half as much as I did and therefore your side effects are probably not as bad as mine was.

But Cheers!!! We are here!!! Enjoy!!!

Cartier

Christmas

cartierlee said:

Kent Cass
Kent,

Thank you for the warm welcome.

My Chemo was Cisplatin the whole time except for the last week which they gave me Carboplatin because I was way too week for the strong stuff. I had 7 weeks of Chemo and radiation everyday so 35 doses of each. Every Monday was the worst for me because the Chemo would take 6 hours and the size of the bottle looks like a 2 Litre Coke bottle and not a bag. The other 4 days each week the chemo session would last anout 2 hours but I also have to do radiation for one hour each day. It was not even funny being strapped and bolted down on the mask for a whole hour every day.

I did started my chemo in a hospital because they were not sure how week I would get and if I response to it. After the first treatment they did send me home for the rest. But in hind site, I wish I was in the hospital the whole time because it would have been a lot easier for me and my family. Most importantly they would not have seen me 24 hours per day going through the side effects. It was just as hard for them too.

I think cancer treatment in general has come a long way in a few short years. My opion of your treatment compared to mine is you didn't going through near half as much as I did and therefore your side effects are probably not as bad as mine was.

But Cheers!!! We are here!!! Enjoy!!!

Cartier

Welcome and thanks for sharing
Cartier:

Welcome, and thanks for sharing your upbeat attitudes. I especially love your post about the side effects (brought laughter to my day). Yes, we'are all living with problems from the cure, but we need to be reminded now and then to focus on the bright side.

Christmas

Lisa-NasalPharynx

Christmas said:

Welcome and thanks for sharing
Cartier:

Welcome, and thanks for sharing your upbeat attitudes. I especially love your post about the side effects (brought laughter to my day). Yes, we'are all living with problems from the cure, but we need to be reminded now and then to focus on the bright side.

Christmas

I was diagnosed with Nasal
I was diagnosed with Nasal Pharyngeal Cancer on December 14, 2010. Started radiation and chemo on January 19th at the Hillman Cancer Center in Pittsburgh. Just finished 33 radiation treatments on Friday. YAY!!! Best day ever!!!! I started with Cisplatin, but got the ringing in my ears, so 3 weeks later switched to Carboplatin for 4 weekly treatments. I agree, it is all so scary but having come through it, I'm hoping it was worth it. My general health must have been pretty good - I didn't have many bad side effects outside of the usual nausea, tiredness, etc. I did lose the bottom half of my hair. I look pretty "punk" now when I pull it up. My vision definitely got worse. All in all I feel lucky because I read that so many have had much worse experiences. Just wanted to say I'm glad I found this forum. It makes me feel like I'm not so alone. Even people who have had other types of cancers don't understand the different problems with head and neck cancers. I'm 51, never smoked cigarettes, but I did test positive for the Epstein Barr virus. I haven't had a chance to read every post yet, so I'll go back and do that.

Christmas

Lisa-NasalPharynx said:

I was diagnosed with Nasal
I was diagnosed with Nasal Pharyngeal Cancer on December 14, 2010. Started radiation and chemo on January 19th at the Hillman Cancer Center in Pittsburgh. Just finished 33 radiation treatments on Friday. YAY!!! Best day ever!!!! I started with Cisplatin, but got the ringing in my ears, so 3 weeks later switched to Carboplatin for 4 weekly treatments. I agree, it is all so scary but having come through it, I'm hoping it was worth it. My general health must have been pretty good - I didn't have many bad side effects outside of the usual nausea, tiredness, etc. I did lose the bottom half of my hair. I look pretty "punk" now when I pull it up. My vision definitely got worse. All in all I feel lucky because I read that so many have had much worse experiences. Just wanted to say I'm glad I found this forum. It makes me feel like I'm not so alone. Even people who have had other types of cancers don't understand the different problems with head and neck cancers. I'm 51, never smoked cigarettes, but I did test positive for the Epstein Barr virus. I haven't had a chance to read every post yet, so I'll go back and do that.

Welcome, Lisa
Lisa:

Welcome to the Survivors' Network! Congratulations on completing your radiation treatment! Keep up your positive attitude! I'm laughing because I never thought to pull up my hair for the punk look- just went with a hat.

Christmas

cartierlee

Lisa-NasalPharynx said:

I was diagnosed with Nasal
I was diagnosed with Nasal Pharyngeal Cancer on December 14, 2010. Started radiation and chemo on January 19th at the Hillman Cancer Center in Pittsburgh. Just finished 33 radiation treatments on Friday. YAY!!! Best day ever!!!! I started with Cisplatin, but got the ringing in my ears, so 3 weeks later switched to Carboplatin for 4 weekly treatments. I agree, it is all so scary but having come through it, I'm hoping it was worth it. My general health must have been pretty good - I didn't have many bad side effects outside of the usual nausea, tiredness, etc. I did lose the bottom half of my hair. I look pretty "punk" now when I pull it up. My vision definitely got worse. All in all I feel lucky because I read that so many have had much worse experiences. Just wanted to say I'm glad I found this forum. It makes me feel like I'm not so alone. Even people who have had other types of cancers don't understand the different problems with head and neck cancers. I'm 51, never smoked cigarettes, but I did test positive for the Epstein Barr virus. I haven't had a chance to read every post yet, so I'll go back and do that.

Lisa-N
Hi Lisa,

Congratulation for your completion of your treatment. Time to have a Big Party and keep the party going for as long as you live! Your treatment was certainly well worth it considering that you are alive and well now posting on this message board.

My vision got pretty bad too but it did get better a few months later so it might be just a short term side effect.

When your hair grows back they will be better than the one you had before (softer) so prepare to have some really good looking hair comming to your scalp.

I was told that NPC mostly only happens to Asian from the Southern China (Canton) area including Taiwan, Phillipines, Vietnam area and so forth and the common ties is being Epstein Barr Virus positive AND most had eaten Dried salt fish which is a common food dish in the part of the world. I was from Hong Kong and certainly grew up eating a lot of dried salt fish. Let me know which part of the world you grew up in and if you had eaten a fair amount of dried salt fish.

Other than that, Congratulation, Enjoy and LIVE LIFE !!!! We are the lucky ones :-)

Cartier

sweetblood22

cartierlee said:

Lisa-N
Hi Lisa,

Congratulation for your completion of your treatment. Time to have a Big Party and keep the party going for as long as you live! Your treatment was certainly well worth it considering that you are alive and well now posting on this message board.

My vision got pretty bad too but it did get better a few months later so it might be just a short term side effect.

When your hair grows back they will be better than the one you had before (softer) so prepare to have some really good looking hair comming to your scalp.

I was told that NPC mostly only happens to Asian from the Southern China (Canton) area including Taiwan, Phillipines, Vietnam area and so forth and the common ties is being Epstein Barr Virus positive AND most had eaten Dried salt fish which is a common food dish in the part of the world. I was from Hong Kong and certainly grew up eating a lot of dried salt fish. Let me know which part of the world you grew up in and if you had eaten a fair amount of dried salt fish.

Other than that, Congratulation, Enjoy and LIVE LIFE !!!! We are the lucky ones :-)

Cartier

Softer hair.
Cartier, I had to laugh at this, because I have very thick, wavy, and wiry hair and I lost from the top of my ears down. When it grew back, it was even more wiry and curly. You can see a clear line of demarkation between the old and new hair. Looks pretty funny if I don't do anything to it. I am just glad it grew back, I didn't know it was going to fall out. Would have been nice if it grew back softer though. I guess it depends on the person. I have just decided to keep it super short.