Calling all NPC Starters & Survivors

Hondo

frank10g said:

Bad but not sooo bad...
Hello everybody,
I just went to my onco and ENT for 6 week post treatment check up yesterday. They are very happy with the results, the cancers responded well to the treatment. According to my ENT who is in Kuala Lumpur, Malaysia, NPC has excellent survival rate if it hasn't spread to other parts of the body, like brain or bone or lungs. He handles lots of NPC patients because it is quite common in Asia.
So far I have improved so much since the last treatment. My mucous has reduced by about 80%, saliva still thick, taste back 50-60%. Appetite is good, head is clear and spirit is up. So I just want to share with new patients that it is a tough ride going through radiation and chemo but when all is done... it's not sooooo bad...
Frank

Frank
That is great news; you are only 6 weeks out of treatment and already having taste and your appetite it back. I am really happy for you my Friend keep up the good progress and keep posting.

Hondo

janymac said:

Hi Hondo
My blood pressure is the opposite to yours all of a sudden - completely sky high and have to go back next week to get another reading before starting meds which is why I had the carotid test. This is why I need to know what the damage to the carotids is about as want to avoid strokes at all costs as my husband has progressive MS and don't know what we would do if that happened. I am interested in what bit got damaged in you that regulates the blood pressure in you as may be that is what has happened to me with opposite effects - was it the hypothalamus? My BP is 200/106 on Friday and I am only 45 female. Its twice measure that level.

I am also interested in your pain. Didn't mention it above, but I get bad spasms in my face, also get massive pain as if I have got earache, dental abcess and jaw pain all at once. Fotunately it isn't there all the time (other than when I was in treatment where is was there all the time), but seems to go in episodes.I think it is a throw back from the treatment, but can't work out what sets it off.

Can I say, Hondo, my hat off to you for going through it three times - that must have taken lots of guts and can only imagine what that must have taken. You are a strong person.

With my new way of eating, it wasn't something I did in the early days - it was about 4, months post treatment and there is a definate technique to it - used to put in too much water and then couldn't chew without dribbling and plenty of coughing and choking along the way. Have even sprayed people with food I thoguht I had swallowed, but hadn't and only came out when I spoke - sometimes days later. I now have it down to an artform, but do need to concentrate when I eat and cannot eat on the go and have to be careful about the fatigue as it can still come up and bite me if I have not been careful.

Janymac

You need to get a doctor degree; you hit the bp problem right on the money “Carotid Sinus” is where my bp problems is coming from. I started a tread on it Head & Neck Radiation / BP, seam like a lot of others are having the same problems, I just wonder why our doctors don’t know about this..

Coupe35

Hondo said:

Frank
That is great news; you are only 6 weeks out of treatment and already having taste and your appetite it back. I am really happy for you my Friend keep up the good progress and keep posting.

Question: Optic nerve damage
Did anybody have any optic nerve damage while taking the radiation.

Hondo

Coupe35 said:

Question: Optic nerve damage
Did anybody have any optic nerve damage while taking the radiation.

Hi Coupe35

I have very slight damage to the right eye only; the biggest problem is in the hearing. I am 5 years past my last treatment for NPC; you will find a lot of other here some just starting treatment and others 8 and 12 years passed treatment, we are all doing fine and living with our new normal. If any of us can help you please let us know your needs.

Take care

Christmas

Hondo said:

Hi Coupe35

I have very slight damage to the right eye only; the biggest problem is in the hearing. I am 5 years past my last treatment for NPC; you will find a lot of other here some just starting treatment and others 8 and 12 years passed treatment, we are all doing fine and living with our new normal. If any of us can help you please let us know your needs.

Take care

Thanks for the advice
Thanks all for your advice and concern. I'm so thankful for all the postings. Only we survivors can understand and laugh at our situation. The eating, the dental problems, the eyes, the hearing, etc.

My eyes have dried up since the treatment. I first had a bubble in my right eye. Now, I have a floater in my right eye. At first, my opthalmologist said I had glaucoma. I then had more testing done. Turns out that I have a floater. Not a problem because I still have a good left eye. Anyone else having the same problem? I also get lots of goop in my eyes.

I do have terrible staining of my teeth. After the treatment, I had problems opening wide. Fortunately, I can now open wide enough to see a dentist. He is keeping an eye on my situation. So far, I've lost one molar and had a front tooth filled. I was seeing him three times yearly, but he recently suggested four visits per year.

I am taking a medication for low thyroid. My white blood count is on the low side. Not sure what's causing it, but every now and then, I encounter a situation with the need for frequent urination. When I feel that coming on, I drink lots of water and take in more fluids, then that goes away in a day or so.

Hearing? After treatment, I had an ear tube put in after an episode of clogged ears that wouldn't clear. Then came the ringing. Had my earing thoroughly checked out. That was a few years ago. I think that the ringing/buzzing is worse, but I still have decent hearing.

Fortunately, I'm still able to work. Due to my dry mouth which affects my speech, people have a hard time understanding me. I have a difficult time with words over three syllables. I used to be an excellent speller, but not so anymore.

I'm not complaining. Just want to know if we're all in the same boat.

I think that it's great we can share some ideas. I know that doctors are getting better at treating the disease, but there needs to be better medical support for the survivors.

Fire34

Christmas said:

Thanks for the advice
Thanks all for your advice and concern. I'm so thankful for all the postings. Only we survivors can understand and laugh at our situation. The eating, the dental problems, the eyes, the hearing, etc.

My eyes have dried up since the treatment. I first had a bubble in my right eye. Now, I have a floater in my right eye. At first, my opthalmologist said I had glaucoma. I then had more testing done. Turns out that I have a floater. Not a problem because I still have a good left eye. Anyone else having the same problem? I also get lots of goop in my eyes.

I do have terrible staining of my teeth. After the treatment, I had problems opening wide. Fortunately, I can now open wide enough to see a dentist. He is keeping an eye on my situation. So far, I've lost one molar and had a front tooth filled. I was seeing him three times yearly, but he recently suggested four visits per year.

I am taking a medication for low thyroid. My white blood count is on the low side. Not sure what's causing it, but every now and then, I encounter a situation with the need for frequent urination. When I feel that coming on, I drink lots of water and take in more fluids, then that goes away in a day or so.

Hearing? After treatment, I had an ear tube put in after an episode of clogged ears that wouldn't clear. Then came the ringing. Had my earing thoroughly checked out. That was a few years ago. I think that the ringing/buzzing is worse, but I still have decent hearing.

Fortunately, I'm still able to work. Due to my dry mouth which affects my speech, people have a hard time understanding me. I have a difficult time with words over three syllables. I used to be an excellent speller, but not so anymore.

I'm not complaining. Just want to know if we're all in the same boat.

I think that it's great we can share some ideas. I know that doctors are getting better at treating the disease, but there needs to be better medical support for the survivors.

NPC starters
I am new to this board. I was diagnosed with stage IV of the head & Neck on July 14th with unknown primary. Started induction chemo on Aug. 8th for 8 weeks with Erbitux,
taxol & Carboplatin. This was part of a clinical study at Universtiy of Chicago after cheno I then sarted concurrent chemo/radiation. During radiation I had 24 hr. of 5FU for 5 days and hydroxyurea twice daily. My radiation was also twice daily for 5 weeks with one week on and one week off. Due to complications I rarely had the weeks off that i was supposed too. on the off week they had me return for Erbitux, I also received that during my inpatient stays. My last chemo day was Nov. 30 I had my PET/CT scans a couple of weeks ago and they were negative. I am approx 3 months out.
I had terible mucous buildup during chemo/radiation, my throat swelled up speech was extremely difficult and so was eating. I had a port-a-cath placed during my third week of chemo, mine was a duel port as I had chemo on one side saline/blood draws on the other. My appetite disappeared and a tube was placed. Lost 30 lbs. Dry mouth was terrible, always and still am drinking water. Currently swallowing is easier and am eating more table foods, it is mind over matter. Even though I cant taste, I know I like it so I eat it.
Christmas, the chemo is probalby making your blood count go low, if it is not below the normal low you will be ok, mine were always above the normal high so I was always ion antibiotics
Hope this helps someone and Good Luck to All

Coupe35

Fire34 said:

NPC starters
I am new to this board. I was diagnosed with stage IV of the head & Neck on July 14th with unknown primary. Started induction chemo on Aug. 8th for 8 weeks with Erbitux,
taxol & Carboplatin. This was part of a clinical study at Universtiy of Chicago after cheno I then sarted concurrent chemo/radiation. During radiation I had 24 hr. of 5FU for 5 days and hydroxyurea twice daily. My radiation was also twice daily for 5 weeks with one week on and one week off. Due to complications I rarely had the weeks off that i was supposed too. on the off week they had me return for Erbitux, I also received that during my inpatient stays. My last chemo day was Nov. 30 I had my PET/CT scans a couple of weeks ago and they were negative. I am approx 3 months out.
I had terible mucous buildup during chemo/radiation, my throat swelled up speech was extremely difficult and so was eating. I had a port-a-cath placed during my third week of chemo, mine was a duel port as I had chemo on one side saline/blood draws on the other. My appetite disappeared and a tube was placed. Lost 30 lbs. Dry mouth was terrible, always and still am drinking water. Currently swallowing is easier and am eating more table foods, it is mind over matter. Even though I cant taste, I know I like it so I eat it.
Christmas, the chemo is probalby making your blood count go low, if it is not below the normal low you will be ok, mine were always above the normal high so I was always ion antibiotics
Hope this helps someone and Good Luck to All

Where is primary
This question is for Fire34 but maybe others would know.. If they do not know where the primary is, how do they know where to apply the radiation. Just trying to understand all this.

Fire34

Coupe35 said:

Where is primary
This question is for Fire34 but maybe others would know.. If they do not know where the primary is, how do they know where to apply the radiation. Just trying to understand all this.

No primary
Couple 35
Even though I had no primary, I had 4 tumors on the lower right side of my neck that they located thru CT scans. I originally had a rather big lump on the upper side of my neck that a local ENT biopsied. When the biopsy came back inconclusive he removed it. When my wife and I started our consults at University of Chicago, all the doctors asked my why it was removed. That was scary, now thinking it has spread all over. Mine was stageIV SCC with hpv+. I am 3 months post treatment. The hospital radiated both sides of my neck just as a precaution. I do not know the dose but I was shot 10 times on the right and 6 on the left.

Kent Cass

Fire34 said:

No primary
Couple 35
Even though I had no primary, I had 4 tumors on the lower right side of my neck that they located thru CT scans. I originally had a rather big lump on the upper side of my neck that a local ENT biopsied. When the biopsy came back inconclusive he removed it. When my wife and I started our consults at University of Chicago, all the doctors asked my why it was removed. That was scary, now thinking it has spread all over. Mine was stageIV SCC with hpv+. I am 3 months post treatment. The hospital radiated both sides of my neck just as a precaution. I do not know the dose but I was shot 10 times on the right and 6 on the left.

Primary
I'm unknown Primary, Coupe. They did a last-minute biopsy, which my Rad Dr. ordered my ENT Dr. to do, in hopes of finding the Primary. Because that Primary was not found- they had to do a lot more radiation: I was zapped in 20 places/session. I think that if they can find what they think is the Primary- they surgically remove it, and they can reduce the number of areas they think need to get radiated. Pet Scans are used to find the areas it has spread to. Have you had a PS, yet?

Fire34- is the 34 for Walter? I'm Quad Cities, in western Illinois. I had 2 tumors on the left side of my neck. I was the one who had to ask my ENT about removal, which seemed the route to go. He told me the chemo and rad would take care of the tumors, which they did, and so far (15+-months) have. My lower tumor was near the thyroid, and I asked if that could be the Primary- no, I have/had NPC, as diagnosed by the U of Iowa.

Recognize the picture by my name, Fire34? Only Harrison lies between the Ike and Rush-Presbyterian-St.Luke's, which is what the picture is of. Rush does a lotta cutting-edge cancer treatments. U of Chicago is also great, I hear.

kcass (lifelong Bear fan)

Coupe35

Kent Cass said:

Primary
I'm unknown Primary, Coupe. They did a last-minute biopsy, which my Rad Dr. ordered my ENT Dr. to do, in hopes of finding the Primary. Because that Primary was not found- they had to do a lot more radiation: I was zapped in 20 places/session. I think that if they can find what they think is the Primary- they surgically remove it, and they can reduce the number of areas they think need to get radiated. Pet Scans are used to find the areas it has spread to. Have you had a PS, yet?

Fire34- is the 34 for Walter? I'm Quad Cities, in western Illinois. I had 2 tumors on the left side of my neck. I was the one who had to ask my ENT about removal, which seemed the route to go. He told me the chemo and rad would take care of the tumors, which they did, and so far (15+-months) have. My lower tumor was near the thyroid, and I asked if that could be the Primary- no, I have/had NPC, as diagnosed by the U of Iowa.

Recognize the picture by my name, Fire34? Only Harrison lies between the Ike and Rush-Presbyterian-St.Luke's, which is what the picture is of. Rush does a lotta cutting-edge cancer treatments. U of Chicago is also great, I hear.

kcass (lifelong Bear fan)

Pet Sacn
Yes, I had a pet scan last week. The cancer is in my nasal area and 1 or 2 lymph nodes on the left side of neck. I'm having a biospy on one of the nodes next week to see what type cells are involved. I hope vanderbilt is on top of this type of cancer because that is where I will most likely go. From what I read, they do not do surgery in the nasal area because of all the vital nerves being close together.

Hondo

Coupe35 said:

Pet Sacn
Yes, I had a pet scan last week. The cancer is in my nasal area and 1 or 2 lymph nodes on the left side of neck. I'm having a biospy on one of the nodes next week to see what type cells are involved. I hope vanderbilt is on top of this type of cancer because that is where I will most likely go. From what I read, they do not do surgery in the nasal area because of all the vital nerves being close together.

Coupe
You might also want to ask about Cyber-knife, there are a few survivors here who had this procedure. I don’t know much about it as it was not available to me 5 years ago.

Good luck on whatever you do my friend and just remember that there is life after Cancer I am living proof.

Please plan to stay through your treatment and keep posting on how you are doing

Fire34

Kent Cass said:

Primary
I'm unknown Primary, Coupe. They did a last-minute biopsy, which my Rad Dr. ordered my ENT Dr. to do, in hopes of finding the Primary. Because that Primary was not found- they had to do a lot more radiation: I was zapped in 20 places/session. I think that if they can find what they think is the Primary- they surgically remove it, and they can reduce the number of areas they think need to get radiated. Pet Scans are used to find the areas it has spread to. Have you had a PS, yet?

Fire34- is the 34 for Walter? I'm Quad Cities, in western Illinois. I had 2 tumors on the left side of my neck. I was the one who had to ask my ENT about removal, which seemed the route to go. He told me the chemo and rad would take care of the tumors, which they did, and so far (15+-months) have. My lower tumor was near the thyroid, and I asked if that could be the Primary- no, I have/had NPC, as diagnosed by the U of Iowa.

Recognize the picture by my name, Fire34? Only Harrison lies between the Ike and Rush-Presbyterian-St.Luke's, which is what the picture is of. Rush does a lotta cutting-edge cancer treatments. U of Chicago is also great, I hear.

kcass (lifelong Bear fan)

Sorry Kent
No I am not a Bears fan :-( To not interfere with your treatment I wont tell you show my team is:-)The 34 is my ID number of the local volunteer fire department I belong too.
You have quite a drive to Chicago, we live in a small town 60 miles south.
The way it sounds like U of C does things they kill things first and do dissections if needed later. My PET scan showed it was not needed, but there were some supicious areas that they will keep an eye on during my follow ups. Follow ups are for two years
Dave

Hondo

fsdman said:

Hi Hondo,
I was diagnosed
Hi Hondo,
I was diagnosed on 1/1/2009. Stage 1 NPC. I was very lucky to be caught so early.I was aware of the early symptoms because my older brother died of NPC about 15 years ago.I had a lump on my neck and one morning I got a nose bleed. I NEVER got a bloody nose so I went to ENT and told him I had NPC.He doubted it but I knew it.My treatments ended in April 35 rads -6 chemo.I lost 65 lbs and the tube saved my life. I cant imagine not getting the tube during treatment.I could hold nothing down.I live in CA and used medical marajuana during treatment. It was great help with appetite ,sleep and nausea.And sometimes it just made me forget for a while and gave a little euphoria.My DR thought it a good idea.I agree that our experience can help. I will add when I have something of value. By the way-did you look into the acuputure?That and staying on the salagen has been a huge help.I never thought I would ever be near as good as I am now.I never stopped pushing myself to get back to "normal".I rarely got off the couch during treatment but soon after it stopped I began to work on repairing all the damage we all know.But the absolute most important thing that got me through was my family. My wife was a 24/7 nurse whoallowed me to only concern myself with getting better.

Hi fsdman

Sorry I missed your post somehow, sounds like you are doing very well after treatment, and you are so right we need to push ourselves sometimes to get as close to normal as possible but except that normal might be a little different.

Great hearing from you keep posting.

davey3

Fire34 said:

Sorry Kent
No I am not a Bears fan :-( To not interfere with your treatment I wont tell you show my team is:-)The 34 is my ID number of the local volunteer fire department I belong too.
You have quite a drive to Chicago, we live in a small town 60 miles south.
The way it sounds like U of C does things they kill things first and do dissections if needed later. My PET scan showed it was not needed, but there were some supicious areas that they will keep an eye on during my follow ups. Follow ups are for two years
Dave

My Steps to Treatment
Hello all survivors,
We are moving forward with the process to start treatment. Right now I am in the process of getting dental work done.In 15 days I go for a fitting of my Radiation mask and do simulated radiation scan.
They are treating me for Small Cell Carcinoma in the nasopharynx and in 2 Lymph Nodes.
They are going to do Rad 5 days a week twice a day and the Chemo will be 3 times a week.
Cisplatin and Etoposide will be the drugs they are going to use.
Went for hearing test,eye test and they came back ok for these drugs> Because my hearing is so bad now they say I will not notice much of the lost that comes from the cisplatin.
Does anyone have any feed back on what I am in for for the next 3 months and what to expect.
My doctor is telling me that there are only 30 cases of this type of cancer that I have.
She says because its small cell and where it is located makes it rare.
I would be happy to hear from you all.
Thank You and God Bless.
Day At A Time.

Kent Cass

davey3 said:

My Steps to Treatment
Hello all survivors,
We are moving forward with the process to start treatment. Right now I am in the process of getting dental work done.In 15 days I go for a fitting of my Radiation mask and do simulated radiation scan.
They are treating me for Small Cell Carcinoma in the nasopharynx and in 2 Lymph Nodes.
They are going to do Rad 5 days a week twice a day and the Chemo will be 3 times a week.
Cisplatin and Etoposide will be the drugs they are going to use.
Went for hearing test,eye test and they came back ok for these drugs> Because my hearing is so bad now they say I will not notice much of the lost that comes from the cisplatin.
Does anyone have any feed back on what I am in for for the next 3 months and what to expect.
My doctor is telling me that there are only 30 cases of this type of cancer that I have.
She says because its small cell and where it is located makes it rare.
I would be happy to hear from you all.
Thank You and God Bless.
Day At A Time.

NPC and 30
There are a number of us NPC survivors, davey. I'm 17-months, and others have far greater tenure than I- SO, get used to the idea that you can survive this. We have, and so will you-BELIEVE! Click on our names in the left-hand column to go to each of our home pages, and you will get each of our basics with NPC.

Hard to figure your Onco telling you "there are only 30 cases of this type," unless there's some peculiarity with your's that makes it so. Is your Onco at a major C center, and do you know her credentials? I got the Cisplatin/FU5, w/rads, but at a little more aggressive delivery, so I have grounds to wonder about your Onco's experience. Others have had the same treatment as you are getting, and we are all small cell. Because others have had the C&R delivery you will get- they are the ones to better advise you on what lies ahead. The staples for us all: Magic Mouthwash/gargling with Baking Soda and a Salt Water mix/pain meds, w/possible Xanax-type meds/anti-nausea, like Compazine/ and meds for both extremes of the "regularity" thing, to name a few.

Has your Onco suggested a feeding tube/PEG, and a Port? I got both some 14-months ago, and still have each. I am the advocate for the PEG, as it makes the getting of vital nutrition so much easier, even if one could survive without it. And there are others, here, who will testify to the same. PEGS are a bit of a nuissance, but also comes a time when they are most certainly a blessing to all of us who've had them. AND BE VERY AWARE of both the importance of nutrition, and the quality- HONDO AND SCAMBUSTER ARE THE AUTHORITIES ON THIS, along with Joe. Their advice is of a great value. You must give your body the ammo to fight this fight, and that ammo goes by the name of Nutrition. Nobody questions that, or it's importance, Davey.

Are you "Unknown Primary?" I, and others, here, are. Basically, it means they will have to treat a larger area. And any talk of neck dissection? My Onco/Rad team used what they had to offer to blast my two left-side neck tumors into oblivion. Others speak of dissection/surgical removal.

Stay with us, Davey- that's why we are here on the ACS site. There's no sugar-coating to what's down the road for you, my friend. It is not an easy road upon which to tred, but we have all gone down that road, and we are still here. Heck, I returned to work a month after my last rad, and that was over 11-months ago. Our roads are a little different, but the light at the end of our roads is the same= survival. You will get there, as we all have. Stay with us- that's why we're here.

Believe

kcass

fsdman

davey3 said:

My Steps to Treatment
Hello all survivors,
We are moving forward with the process to start treatment. Right now I am in the process of getting dental work done.In 15 days I go for a fitting of my Radiation mask and do simulated radiation scan.
They are treating me for Small Cell Carcinoma in the nasopharynx and in 2 Lymph Nodes.
They are going to do Rad 5 days a week twice a day and the Chemo will be 3 times a week.
Cisplatin and Etoposide will be the drugs they are going to use.
Went for hearing test,eye test and they came back ok for these drugs> Because my hearing is so bad now they say I will not notice much of the lost that comes from the cisplatin.
Does anyone have any feed back on what I am in for for the next 3 months and what to expect.
My doctor is telling me that there are only 30 cases of this type of cancer that I have.
She says because its small cell and where it is located makes it rare.
I would be happy to hear from you all.
Thank You and God Bless.
Day At A Time.

Davey,
Sorry you have to
Davey,
Sorry you have to go thru this but you will survive as we all have-it aint fun but it does end and get better. That is the way I got by day to day-knowing that I had a finite number of more bad days and I just had to wait it out.I am now 12 mos post treatments (45 rads-6 cisplatin)and I am doing better than I thought I would be just a few mos ago.I suggest the following tips based on my own experience:
1 hydration and nutrition-I dehydrated and got in trouble fast.
2 get a PEG !!!-You can take both liquids and food even when your throat feels like it might.I still lost 65 lbs with the tube.I didnt think getting it in or out was a big deal.
3 be your own advocate or assign someone the task-too many cooks miss appts,miss meds,etc. My wife was in total control so things didnt get messed up.I must have had 30 different meds.
4 tell the docs everything-they have all kinds of helpful meds its O.K. to complain
5 this board knows,better than a doctor,what you are going thru, everyone goes thru it a little different but some aspects are universal.Good luck to you

Pumakitty

davey3 said:

My Steps to Treatment
Hello all survivors,
We are moving forward with the process to start treatment. Right now I am in the process of getting dental work done.In 15 days I go for a fitting of my Radiation mask and do simulated radiation scan.
They are treating me for Small Cell Carcinoma in the nasopharynx and in 2 Lymph Nodes.
They are going to do Rad 5 days a week twice a day and the Chemo will be 3 times a week.
Cisplatin and Etoposide will be the drugs they are going to use.
Went for hearing test,eye test and they came back ok for these drugs> Because my hearing is so bad now they say I will not notice much of the lost that comes from the cisplatin.
Does anyone have any feed back on what I am in for for the next 3 months and what to expect.
My doctor is telling me that there are only 30 cases of this type of cancer that I have.
She says because its small cell and where it is located makes it rare.
I would be happy to hear from you all.
Thank You and God Bless.
Day At A Time.

Hi
I want to wish you all the best. My dad just did the fitting today for his mask. He has back tongue cancer. This is the best place to ask questions, they have answered so many of mine.

Please take care and remember you will get better it just will take a while.

George_0325

I am new here
I was diagonized as NPC IIIA on Feb. 2010. The treatment protocol is 35radiation+7Chemo (Cisplatin) for the first round, then 3 weeks Cisplatin+5Fu in the next 3 months for the 2nd round. I just finished the first round 2 weeks ago.
My big problems are:
1.Painful throat, it causes a lot of mucus and coughing so that I can not sleep well.
2 I feel ear pressure on my left ear and my radiation oncologist said it better to have ear fluid drainage.
3.I can only whisper, my voice is worse than 1 week ago.

Does anybody have similar symptoms? Any information and help are highly appreciated.

Best wishes to everyone!

micktissue

George_0325 said:

I am new here
I was diagonized as NPC IIIA on Feb. 2010. The treatment protocol is 35radiation+7Chemo (Cisplatin) for the first round, then 3 weeks Cisplatin+5Fu in the next 3 months for the 2nd round. I just finished the first round 2 weeks ago.
My big problems are:
1.Painful throat, it causes a lot of mucus and coughing so that I can not sleep well.
2 I feel ear pressure on my left ear and my radiation oncologist said it better to have ear fluid drainage.
3.I can only whisper, my voice is worse than 1 week ago.

Does anybody have similar symptoms? Any information and help are highly appreciated.

Best wishes to everyone!

George
Hi George. I am 4 weeks post treatment. I had a slightly difference treatment to you as I did not get the 5FU. I have all the symptoms you have although today things are slightly better. I still cannot swallow very well (pain) and have a lot of mucus, but everything is a little less than yesterday.

My right ear was plugged for 3 weeks but it is clear now. As well I could only whisper for 3 weeks but reports are now that my "old voice" is back.

It will take time but you will heal. For me it's been more about enduring than being able to do anything about it. I rinse with salt/baking soda but I haven't slept through the night for about 8 weeks.

If you can, try and swallow something, even just a bit of water every day just to keep the reflex active. If you forget how to swallow you'll need PT to get it back. I'm assuming you have a feeding tube.

Best,

Mick

PS - I just sneezed which yesterday would have sent me through the roof with pain, but today it was tolerable.

Kent Cass

George_0325 said:

I am new here
I was diagonized as NPC IIIA on Feb. 2010. The treatment protocol is 35radiation+7Chemo (Cisplatin) for the first round, then 3 weeks Cisplatin+5Fu in the next 3 months for the 2nd round. I just finished the first round 2 weeks ago.
My big problems are:
1.Painful throat, it causes a lot of mucus and coughing so that I can not sleep well.
2 I feel ear pressure on my left ear and my radiation oncologist said it better to have ear fluid drainage.
3.I can only whisper, my voice is worse than 1 week ago.

Does anybody have similar symptoms? Any information and help are highly appreciated.

Best wishes to everyone!

Welcome
My NPC treatment was a little different from your's, but did get Cisplatin and FU5. Others have gotten your delivery, also, so they might be more of authorities on what to expect. As for your three symptoms

1) Yes for the throat condition, mucous to frequently spit-up, but No to the coughing. But, Yes for the sleep- typical got 3-hours at a time, at night, but did get a real good nap in the afternoon. The worst of it, for me, was the condition of my mouth- all of my mouth area.

2) Did not have any ear pressure problems. My understanding is that it's not unusual, though.

3) Yes, to the voice being reduced to a whisper. Lasted for most of my treatment time.

George- hope you have the Magic Mouthwash, pain meds, Port and feeding tube, and pain meds you need, and Xanax-like meds if need be (I did need). I ended-up only getting 31 full H&N rads (20 places/session), and 3 partials at the end; however, was incapable of getting any rads, post-Chemo, in weeks #5&6, with spending the first four days of week #6 in the hospital. Used Jevity formula with my feeding tube, and it worked okay for me, losing only 17% of my body weight.

NPC, George, is survived. Oh, yes, the going do get tough during post-Chemo treatment times, but there are a number of us active, here, with NPC who have lived okay for years. Heck, I returned to work in early-May of 09, a month after my last rad, and am still working. My best advice: keep your focus on the end of treatment's rough road, and know that you will get there, and beyond. Come What May, George, and deal with it (with the Dr.'s help), keeping the better day at the end of the road as the only thing that really matters. You will get there, as we all have. Your saliva, teeth and mouth will be somewhat changed, but will be okay.

Please keep us informed on how things are with you, and

Believe

kcass