Calling all NPC Starters & Survivors

CajunEagle

micktissue said:

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.

Hey Mick
Can you Yawn yet ?? I was elated when I could stretch open my mouth in a normal yawn position. If you can't, be sure to spend some time at least 3 times a day opening your mouth as wide as possible.

sportsman

Calling all NPC Starters & Survivors
Hondo: Mine started in December, 2006 and treatment ended in February, 2007. I am a little over four year survivor now.

micktissue

CajunEagle said:

Hey Mick
Can you Yawn yet ?? I was elated when I could stretch open my mouth in a normal yawn position. If you can't, be sure to spend some time at least 3 times a day opening your mouth as wide as possible.

Yawning
Yeah I know what you mean about yawning. I try to suppress that as well as involuntary swallowing. It's strange but for example if a blast of wind hits my face, I will swallow. It hurts to swallow so I don't do it very much.

I do try to stretch the mouth and I can tell it's getting a bit better (not as much pain).

Best,

Mick

Kent Cass

sportsman said:

Calling all NPC Starters & Survivors
Hondo: Mine started in December, 2006 and treatment ended in February, 2007. I am a little over four year survivor now.

Oh Yeah
I'm only a week away from 18-months, Sportsman, so I do like the sound of four years- oh yeah.

kcass

Scambuster

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

Good to hear Frank
Hi Frank,

Was wondering how you were as it's been a while. Great to hear of your excellent rebound and the lifestyle changes while appear to be working well. I finished treatment on October 7th 2009 but was laid down for a good while. Started coming good early February.

I am doing the diet like you, though must say I have lapsed a little and eat some lean beef, fish and chicken, but much, much less than pre 'C'. Do lots of salads and juices as well. I also take a bunch of Vitamins and supplements which I think is helping (on my expressions page if interested).

I am getting acupuncture to try to restart my saliva and am getting positive results. My taste is about 50-80% depending on what foods, Saliva 10-20% still. I sneeze like a cat now which is weird when you've been sneezing a certain way all your life (mine was big Ah CHOO !) Now it's more of an "Ah snit" ! Like I said, like a cat. Energy is good and life is good again and has returned to a new but very acceptable normal.

As Keith Richards (of the Rolling Stones) once said "Nice to be here, nice to be ANYWHERE !" How true.

Stay well Frank and drop a line once in while with how you're doing.

Regds
Scambuster

George_0325

micktissue said:

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.

Ear problem
Mick,

You mentioned your right ear was plugged for 3 weeks. Did you have some sepcial treatment for that such an ear drops or ear fluid drainage by tube?

Best wishes,

George

micktissue

George_0325 said:

Ear problem
Mick,

You mentioned your right ear was plugged for 3 weeks. Did you have some sepcial treatment for that such an ear drops or ear fluid drainage by tube?

Best wishes,

George

George
Hi George. No, I just lived with it as we knew the cause (mucus) and it wasn't causing any other problems (like an ear infection).

For me this whole trip has been about endurance. As long as I am tougher than the pain and discomfort I'm ok (I am not always, BTW).

Best,

Mick

stevenl

micktissue said:

George
Hi George. No, I just lived with it as we knew the cause (mucus) and it wasn't causing any other problems (like an ear infection).

For me this whole trip has been about endurance. As long as I am tougher than the pain and discomfort I'm ok (I am not always, BTW).

Best,

Mick

coughing
Hey George,
I have found that when I cough 3 to 5 times I am going to sneeze. And boy, does that hurt.
Oh yea, hey Mick got that voice back eh? That's great because I know that will help you recover more quickly if you can jam and sing some. Whip out the axe and and start whackin away man!!!

George, hang in there man. I finished treatment 3 weeks ago. IT WAS HELL GOING THROUGH IT,
but there does come an end to it. If you have pain get something for it so you nare not fighting the pain, but the C instead.

Best to you both,
Steve

j3rey

calling all NPC starters and survivors
Hi Hondo,
We are new to NPC. My husband was diagnosed after a biopsy of a left lymph gland that stayed swollen after a cold. Squamous cells found, search for primary followed. Throat biopsies, CT scan, an MRI, and a PET scan. Suspected primary found in left oropharynx in MRI. Neck dissection this week removed nearly 50 lymph nodes (at first we were told 20 but that changed after pathology in). Cancer found in only the one lymph node w/ no extranodal infiltration. Pretty good news except that the suspected area was biopsied and came back clean. Doc thinks that the tumor is small and covered by tissue so that he can't get to it or feel it. Hubby was scoped thorougly while he was under before neck surgery. We saw Doc (surgeon) today to remove one surgical drain. He thinks that radiation only with no chemo will be the plan but will not know for sure until we meet with Oncologist/radiation Docs next week. For now, healing very well. He's up and moving, walked around the block tonight two days post surgery. Full range of motion/strength in left arm. Has had little pain. Good surgeon...can't say enough about finding a good surgeon.

Kent Cass

j3rey said:

calling all NPC starters and survivors
Hi Hondo,
We are new to NPC. My husband was diagnosed after a biopsy of a left lymph gland that stayed swollen after a cold. Squamous cells found, search for primary followed. Throat biopsies, CT scan, an MRI, and a PET scan. Suspected primary found in left oropharynx in MRI. Neck dissection this week removed nearly 50 lymph nodes (at first we were told 20 but that changed after pathology in). Cancer found in only the one lymph node w/ no extranodal infiltration. Pretty good news except that the suspected area was biopsied and came back clean. Doc thinks that the tumor is small and covered by tissue so that he can't get to it or feel it. Hubby was scoped thorougly while he was under before neck surgery. We saw Doc (surgeon) today to remove one surgical drain. He thinks that radiation only with no chemo will be the plan but will not know for sure until we meet with Oncologist/radiation Docs next week. For now, healing very well. He's up and moving, walked around the block tonight two days post surgery. Full range of motion/strength in left arm. Has had little pain. Good surgeon...can't say enough about finding a good surgeon.

Optimism
Sounds pretty good, especially with how thorough the Op exploratory biopsy was. Thing is- you must keep in mind that Chemo and Rad, in combination, are the standard treatment. Do hope that your husband only needs the rads, and that takes care of it. Will be a far easier road for you two to travel on with just the rads. Truly will be. Keep us informed.

kcass

Scambuster

micktissue said:

George
Hi George. No, I just lived with it as we knew the cause (mucus) and it wasn't causing any other problems (like an ear infection).

For me this whole trip has been about endurance. As long as I am tougher than the pain and discomfort I'm ok (I am not always, BTW).

Best,

Mick

Ears
Hi Mick & George,

I was about the same post treatment time as you guys when i started going deaf. More in one ear than the other. A local GP (where I was getting Vitamin B and C shots to help my recovery), had a look and said there was a lot of wax. He gave me drops and then flushed them out 4 days later with big syringe. Very little effect. Scared.

Went to see me ENT the next week for routine post Tx check-up and told him about the problem. He took one look in my ears and said "Your Eustacian Tubes are blocked". Then he said "Hold your nose and blow". (like when you equalize)

I did and my ears squealed and squeaked and almost immediately my hearing improved as the fluid drained from the inner ear. What a relief !!I It took a few hours and a few more 'equalizations', but I got 100% of my hearing back.

Please check with your doctor if you are unsure as your situation may not be the same as mine. Some Chemos do cause hearing loss. I hope both of you have the same result as I did.

Cheers
Scam

Hondo

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!

Hi George
Welcome to CSN, sorry to hear to have this stuff but please understand that it is quite curable and while it will change your live some remember that life after NPC is just as good. Just about everyone on this page has dealt with in NPC is some way or another and the good part is that we are still here to help others going through the same treatment.

My problem started with the lost of hearing in my right ear and bleeding in the nasal passage, I went to 3 different ENT’s before one of them realized what my problem was. They will put tubes in your ears to help drain the ears, it’s not too bad, my last tube fell out of my left ear this week so I am now Tubeless.

Take care and please keep us updated on you progress, and remember we are all here because of one reason and that is to help you become a survivor.

Hondo

sportsman said:

Calling all NPC Starters & Survivors
Hondo: Mine started in December, 2006 and treatment ended in February, 2007. I am a little over four year survivor now.

Hi sportsman
Glad to hear the good news that you are a 4 years survivor, hang in there are keep going strong.

Hondo

j3rey said:

calling all NPC starters and survivors
Hi Hondo,
We are new to NPC. My husband was diagnosed after a biopsy of a left lymph gland that stayed swollen after a cold. Squamous cells found, search for primary followed. Throat biopsies, CT scan, an MRI, and a PET scan. Suspected primary found in left oropharynx in MRI. Neck dissection this week removed nearly 50 lymph nodes (at first we were told 20 but that changed after pathology in). Cancer found in only the one lymph node w/ no extranodal infiltration. Pretty good news except that the suspected area was biopsied and came back clean. Doc thinks that the tumor is small and covered by tissue so that he can't get to it or feel it. Hubby was scoped thorougly while he was under before neck surgery. We saw Doc (surgeon) today to remove one surgical drain. He thinks that radiation only with no chemo will be the plan but will not know for sure until we meet with Oncologist/radiation Docs next week. For now, healing very well. He's up and moving, walked around the block tonight two days post surgery. Full range of motion/strength in left arm. Has had little pain. Good surgeon...can't say enough about finding a good surgeon.

Hi j3rey

Glad to hear that your husband is doing so well after surgery, I would not worry too much about them not finding the primary as they never did fine mine, but I would question them not doing Chemo if they don’t know the primary. Keep posting as we will all be here to help you and answer any questions you might have and also Welcome to CSN.

Take care

Kent Cass

Hondo said:

Hi j3rey

Glad to hear that your husband is doing so well after surgery, I would not worry too much about them not finding the primary as they never did fine mine, but I would question them not doing Chemo if they don’t know the primary. Keep posting as we will all be here to help you and answer any questions you might have and also Welcome to CSN.

Take care

It Is Done
Got my PEG removed this morning! Got: 1/29/09, and lost on 5/4/10. Another recovery step taken.

kcass

staceya

Kent Cass said:

It Is Done
Got my PEG removed this morning! Got: 1/29/09, and lost on 5/4/10. Another recovery step taken.

kcass

Yipee!
Congratulations! Thanks for all the support that you provide and your thoughtful posts.
Stacey

CajunEagle

Kent Cass said:

It Is Done
Got my PEG removed this morning! Got: 1/29/09, and lost on 5/4/10. Another recovery step taken.

kcass

Kent
In a few days, the healing process of the peg hole will bring about almost unbearable itching. At least it did for me. I kept Neosporin and a 2x2 patch on for about two weeks, which kept the irritation down to a minimum. I'm not sure if you got a stitch, but I didn't and it seemed to work out fine and heal up well. It's been about a month and a half since removal of my peg tube, and just a little pinkish around the edges. Remember that it has been there for over a year.....so it will take time to heal. Congratulations.

Larry

Kent Cass

CajunEagle said:

Kent
In a few days, the healing process of the peg hole will bring about almost unbearable itching. At least it did for me. I kept Neosporin and a 2x2 patch on for about two weeks, which kept the irritation down to a minimum. I'm not sure if you got a stitch, but I didn't and it seemed to work out fine and heal up well. It's been about a month and a half since removal of my peg tube, and just a little pinkish around the edges. Remember that it has been there for over a year.....so it will take time to heal. Congratulations.

Larry

Thanks
Yes. Hadn't thought about the itching, but that does ring true. Did not get a stitch, and hope my healing is as good as your's. Got a fresh box of 2x2s and roll of wide paper tape, so I'll take your 2-week advice on keeping it covered. Hey, now that the bulky PEG is gone, and the weather's warmed-up in NW Illinois- couple weeks I just might try and get some golf in. Last year at the Company tournament (best ball format), after one particularly bad shot, I was heard to mumble, "Damned tube," about the time I lowered my hand to touch the top of it. Now- I got no excuses! Yeah.

Thanks

kcass

Hondo

Kent Cass said:

Thanks
Yes. Hadn't thought about the itching, but that does ring true. Did not get a stitch, and hope my healing is as good as your's. Got a fresh box of 2x2s and roll of wide paper tape, so I'll take your 2-week advice on keeping it covered. Hey, now that the bulky PEG is gone, and the weather's warmed-up in NW Illinois- couple weeks I just might try and get some golf in. Last year at the Company tournament (best ball format), after one particularly bad shot, I was heard to mumble, "Damned tube," about the time I lowered my hand to touch the top of it. Now- I got no excuses! Yeah.

Thanks

kcass

Hi Kent

How are you doing now that the PEG is gone

debbiejeanne

Kent Cass said:

It Is Done
Got my PEG removed this morning! Got: 1/29/09, and lost on 5/4/10. Another recovery step taken.

kcass

congrats, Kent!!
God
congrats, Kent!!
God Bless,
Debbie