Post NPC Questions

johnlax38

As I am in recovery phase, even though I have two chemo sessions to go Aug 9 and Aug 30, I have some questions about what to expect in the future. Finished my 40 rads about 6-7weeks ago.

Port
I have a port surgically inserted into the upper left portion of my chest just below my collar bone / shoulder socket. I heard and read these can stay in for years. When did you get yours taken out? I know I'm jumping the gun but I'm just curious. I may wait a year just in case of any re-occurrence of my NPC.

Feeding Tube
When this is taken out how does it feel? My doc said when you are ready you just tug it out. The only thing that is discomforting is the flange that lays under my skin to hold it in place. Do the stomach muscles collapse of the hole? Does my stomach leak? How well and fast does the external hole heal? What should I be aware of? Kinda been on my mind. I have only seen this doc once so I haven't had a chance to grill him on these types of questions. He just put my port and feeding tube in, thats all I used him for.

Learning to Eat
What did you do? I can already feel my phlegm changing for the better. I use to cough *stuff* up every 5 minutes it felt like, now I'm doing it maybe once or twice an hour. I feel real fortunate I am able to drink normally and eat soft foods normally. I am very competitive and judgmental with myself and I am taking this battle on like a challenge. I feel as I have progressed because I can eat soup and soft fruit, canned pastas, etc.. but I want to take that next step and just don't know how. I still depend on my feeding tube for all of my caloric intake. How did you get back into eating 3-4 meals a day? I could do grits in the morning, but thats only 90 calories versus my 350 canned food. Again, am I jumping the gun and pushing to hard? I'm not sure how to gauge myself and I feel as if I am behind in my eating recovery. I have pending therapy for speech and swallowing but these have yet to start. I'm trying to do a lot on my own before that process starts. I can talk fine but my jaw doesn't move much.

Thanks.

Hondo

Hi John
I am too and a NPC survivor and welcome you here to our family. I did all my chemo through the arm and did not use the port nor did I use the PEG so I can help you on some of those questions.

On Eating it sounds like you are doing great by being able to eat soft foods, most of your taste will start coming back about between 2 and 3 months after the last treatment. Weight gain will sometime take a few years before the body re-adjusted to the new Normal you. You sound like a strong guy and you are doing very well coming out of treatment like you did so your body may heal faster just give it time.

All the best to you
Hondo

Kent Cass

post-NPC
John
Finished treatment in early-April 09. Got my PEG out on 5/4/10, and it's just like your Dr. says. Only hurts for a couple seconds. Stomach seals itself shut, and they say you can eat/drink right away, but I gave it some 4-5 hours before I did. The healing of your new belly button, though, do take some time.

As for the Port- still have mine, but meet with the Surgeon on 8/25 to get it taken out. Got it on 1/29/09. My ENT once said I could keep it for many years, however, there is the $134/monthly matter of getting it flushed at a local hospital that's a hassle. All systems are go to get it out, so it's gonna happen.

As for eating, we are all different in our treatments and side-effects/condition. For me, it took about 4-months after the last rad for me to realize I could physically handle anything I wanted to, except for Jalapenos and the like. Sweets were the slowest to return to an okay taste. Things may not taste like you remember them tasting for some time to come, though. Hey, considering the alternative- that's okay.

Best of luck, and good to have you in the NPC gang.

kcass

johnlax38

Kent Cass said:

post-NPC
John
Finished treatment in early-April 09. Got my PEG out on 5/4/10, and it's just like your Dr. says. Only hurts for a couple seconds. Stomach seals itself shut, and they say you can eat/drink right away, but I gave it some 4-5 hours before I did. The healing of your new belly button, though, do take some time.

As for the Port- still have mine, but meet with the Surgeon on 8/25 to get it taken out. Got it on 1/29/09. My ENT once said I could keep it for many years, however, there is the $134/monthly matter of getting it flushed at a local hospital that's a hassle. All systems are go to get it out, so it's gonna happen.

As for eating, we are all different in our treatments and side-effects/condition. For me, it took about 4-months after the last rad for me to realize I could physically handle anything I wanted to, except for Jalapenos and the like. Sweets were the slowest to return to an okay taste. Things may not taste like you remember them tasting for some time to come, though. Hey, considering the alternative- that's okay.

Best of luck, and good to have you in the NPC gang.

kcass

Hondo,
I forced myself to
Hondo,

I forced myself to eat some mac-n-cheese yesterday. After writing that post I had a burst of will and said lets take the next step. It was a good experience, I chewed for the first time with the one molar I have, but it felt good. Tongue is still a tad tight from the rads, but I got it moving. While the cheese was warm swallowing wasn't too bad, with a swig of water all went down fine. As the dish cooled and became more firm this is when it became a pain. I could feel every inch of my throat working while trying to swallow the dryer/cooler food. Again, adding water helped.

Thanks for the advice as always Hondo!

Kent,

Thanks for the information regarding the feeding tube and port. I do have some taste back. I think the Rads effected it more than the chemo. I can taste pears, sugars, ice cream, mac-n-cheese, etc... its seems I have some taste still. I remember when I was on rads I could drink code and only feel the bubbles, tasted like water. I'm scared to try coke now because of the acidity. The taste isn't as strong as before, as you and many others have noted.


New Question
-------------

Hair loss. Did anyone experience total hair loss or partial? For me, I lost all of my hair in the radiation field. I have some hair growth on the back of my head/upper neck but I still have balds spots. My beard is gone and I have some grey/white stubble. My oncologist is 100% surprised that I have not lost any hair on the top of my head, from the cisplatin. I have had four hair cuts since my treatment, all done by myself though. I good ol' military crew cut to match my missing hair.

Scambuster

johnlax38 said:

Hondo,
I forced myself to
Hondo,

I forced myself to eat some mac-n-cheese yesterday. After writing that post I had a burst of will and said lets take the next step. It was a good experience, I chewed for the first time with the one molar I have, but it felt good. Tongue is still a tad tight from the rads, but I got it moving. While the cheese was warm swallowing wasn't too bad, with a swig of water all went down fine. As the dish cooled and became more firm this is when it became a pain. I could feel every inch of my throat working while trying to swallow the dryer/cooler food. Again, adding water helped.

Thanks for the advice as always Hondo!

Kent,

Thanks for the information regarding the feeding tube and port. I do have some taste back. I think the Rads effected it more than the chemo. I can taste pears, sugars, ice cream, mac-n-cheese, etc... its seems I have some taste still. I remember when I was on rads I could drink code and only feel the bubbles, tasted like water. I'm scared to try coke now because of the acidity. The taste isn't as strong as before, as you and many others have noted.


New Question
-------------

Hair loss. Did anyone experience total hair loss or partial? For me, I lost all of my hair in the radiation field. I have some hair growth on the back of my head/upper neck but I still have balds spots. My beard is gone and I have some grey/white stubble. My oncologist is 100% surprised that I have not lost any hair on the top of my head, from the cisplatin. I have had four hair cuts since my treatment, all done by myself though. I good ol' military crew cut to match my missing hair.

Racing stripe
Hi john...I mean Aaarrrrrh me Matey !

On the hair deal, I lost a horizontal strip where the rads went so had a 'Donald Trump Reverso' comb back for a while. My hair came back a few months later and that strip has some funky curls now so I have a Ducks bum now which I always wanted as a kid. Be careful what you wish for !

Scam

Glenna M

johnlax38 said:

Hondo,
I forced myself to
Hondo,

I forced myself to eat some mac-n-cheese yesterday. After writing that post I had a burst of will and said lets take the next step. It was a good experience, I chewed for the first time with the one molar I have, but it felt good. Tongue is still a tad tight from the rads, but I got it moving. While the cheese was warm swallowing wasn't too bad, with a swig of water all went down fine. As the dish cooled and became more firm this is when it became a pain. I could feel every inch of my throat working while trying to swallow the dryer/cooler food. Again, adding water helped.

Thanks for the advice as always Hondo!

Kent,

Thanks for the information regarding the feeding tube and port. I do have some taste back. I think the Rads effected it more than the chemo. I can taste pears, sugars, ice cream, mac-n-cheese, etc... its seems I have some taste still. I remember when I was on rads I could drink code and only feel the bubbles, tasted like water. I'm scared to try coke now because of the acidity. The taste isn't as strong as before, as you and many others have noted.


New Question
-------------

Hair loss. Did anyone experience total hair loss or partial? For me, I lost all of my hair in the radiation field. I have some hair growth on the back of my head/upper neck but I still have balds spots. My beard is gone and I have some grey/white stubble. My oncologist is 100% surprised that I have not lost any hair on the top of my head, from the cisplatin. I have had four hair cuts since my treatment, all done by myself though. I good ol' military crew cut to match my missing hair.

Hair loss
I received 6 doses of cisplatin and am happy to say I never lost my hair. Doctors and nurses were in awe because they had all told me repeatedly that I would start losing it. I did however lose all of the hair from mid ear lobe down, this I know was due to the radiation. Fortunately you can not tell as the rest of my hair is long enough that it covers the "bald" spot. I am almost one year post treatment so I am really not expecting it to grow back. I can live with that because I'm still living ;-)

LOL - can't help you with the beard situation - you'll have to rely on the men to answer that one for you.

Take care and stay well,
Glenna

Kimba1505

Good post for me
John,
I am watching this thread, because many of your questions relate to Mark right now. He gets his PEG out on the 19th. I am not telling him about the ouchy part...in that he does better if he doesn't know.
He lost hair at the hairline at the back of his head...hope it grows back, but like Glenna, the hair above can grow out and cover it.
He has facial hair on his upper cheeks but not on his chin, neck and lower face. In fact, from the skin peeling after the burns from radiaion, his skin is like new. People pay a huge amount of money to get that youthful skin.
I marvel at the human body...especially Mark's.
Kim

johnlax38

Kimba1505 said:

Good post for me
John,
I am watching this thread, because many of your questions relate to Mark right now. He gets his PEG out on the 19th. I am not telling him about the ouchy part...in that he does better if he doesn't know.
He lost hair at the hairline at the back of his head...hope it grows back, but like Glenna, the hair above can grow out and cover it.
He has facial hair on his upper cheeks but not on his chin, neck and lower face. In fact, from the skin peeling after the burns from radiaion, his skin is like new. People pay a huge amount of money to get that youthful skin.
I marvel at the human body...especially Mark's.
Kim

Scam,
YAARRR!!! You be
Scam,

YAARRR!!! You be gettin close to dee plank!

I have the same stripe on the back of my head, i'm fine with it. I can't see it so i don't care much I was just curious if anyone lost hair. I was told by most of my nurses and doctors that my hair would fall out, to the point I would be bald. They even asked if I wanted a wig...sheesh. Thanks for your reply, it's nice to know.

Glenna,

I had the same happen from the radiation field. All of my hair below my ear lobes got zapped. However I do have some stubble and some new hair growth on the back of my head, minus the "landing strip".

Kimba,

Glad I could create a thread that more people can benefit from. I hope to keep it going as i progress and I hope others will find it helpful too. My skin is like new as well, almost like baby soft skin. It's crazy, from my upper cheek to my lower next it is super soft. I want my beard back though haha

------

New Update

So I'm gaining momentum, I went out and got some good ol' chef boyardee. Haven't had the stuff since middle school but man did it tasted good. Spaghetti and meat balls, the sauce did irritate my throat a little bit from the tomato sauce but it was bearable by drinking a bit of water. The meat balls posed a challenge because I had slurped down the sauce before I could mash up the balls in my mouth. By the time I wanted to swallow it was real "grainy" and not pleasant. I also bought some fruit cups in syrup, which I am able to eat fine. I find that the more I talk and the more I try to eat the easier the next attempt is. I kind of chew with my front teeth and the one molar I have, a bit tricky but I'm getting there. It was such a pleasure feeling hungry, eating a bowl of food, being able to keep it down and then feeling full. I swear the things in life you take for advantage of until you experience this type of mess. I swear I will be a better person moving forward.

What was your experience?

Best wishes to you all.

Kent Cass

johnlax38 said:

Scam,
YAARRR!!! You be
Scam,

YAARRR!!! You be gettin close to dee plank!

I have the same stripe on the back of my head, i'm fine with it. I can't see it so i don't care much I was just curious if anyone lost hair. I was told by most of my nurses and doctors that my hair would fall out, to the point I would be bald. They even asked if I wanted a wig...sheesh. Thanks for your reply, it's nice to know.

Glenna,

I had the same happen from the radiation field. All of my hair below my ear lobes got zapped. However I do have some stubble and some new hair growth on the back of my head, minus the "landing strip".

Kimba,

Glad I could create a thread that more people can benefit from. I hope to keep it going as i progress and I hope others will find it helpful too. My skin is like new as well, almost like baby soft skin. It's crazy, from my upper cheek to my lower next it is super soft. I want my beard back though haha

------

New Update

So I'm gaining momentum, I went out and got some good ol' chef boyardee. Haven't had the stuff since middle school but man did it tasted good. Spaghetti and meat balls, the sauce did irritate my throat a little bit from the tomato sauce but it was bearable by drinking a bit of water. The meat balls posed a challenge because I had slurped down the sauce before I could mash up the balls in my mouth. By the time I wanted to swallow it was real "grainy" and not pleasant. I also bought some fruit cups in syrup, which I am able to eat fine. I find that the more I talk and the more I try to eat the easier the next attempt is. I kind of chew with my front teeth and the one molar I have, a bit tricky but I'm getting there. It was such a pleasure feeling hungry, eating a bowl of food, being able to keep it down and then feeling full. I swear the things in life you take for advantage of until you experience this type of mess. I swear I will be a better person moving forward.

What was your experience?

Best wishes to you all.

Hair
Haven't shaved below my left chin since 1/09- nothing grows there. Lost my moustache in treatment, along with the bottom om hair in the back, but the sides and top kept pretty-much intact. Probably could count the number of whiskers on the left side of my face/chin.

kcass

johnlax38

Update
So it seems like almost over night my phlegm has calmed down greatly. It's been about 7 weeks post Rads. I still have some lingering but my voice almost sounds normal again. I have some "deepness" now where as before it was raspy and ill sounding. Its to the point where I forget to lug my tissues around, I spit into tissue instead of a cup. Very surprised about this drastic change for the good. It's been about 4 days now like this and it's great. My throat was chapped on the inside from the constant hacking and coughing. Last night was the first night I slept from 11-8, besides rolling over from side to side. I use to wake up every 2hours with a mouth full of liquid and coughing my lungs up. Didn't wake up once last night to spit, which is the first in months, I can't believe it.

Hope everyone is doing well. I have my trusty friend connected to me this week, 5FU, 5 day treatment. One more to go and I'm done. Then about a month later I have my first PET which I am deathly scared of, scared to know the results that is. Of course we all want the best but I don't want to see Christmas lights in my throat this time if you know what I mean.

I need to start eating more, insurance is refusing to pay for more liquid food. I have about 2weeks left of my supply. I think I'm most nervous about that, the time frame, will I be ok eating on my own again. It's a lot of pressure and anxiety. I guess I will have to supplement with ensure or boost.

Happy Wednesday!

RushFan

johnlax38 said:

Update
So it seems like almost over night my phlegm has calmed down greatly. It's been about 7 weeks post Rads. I still have some lingering but my voice almost sounds normal again. I have some "deepness" now where as before it was raspy and ill sounding. Its to the point where I forget to lug my tissues around, I spit into tissue instead of a cup. Very surprised about this drastic change for the good. It's been about 4 days now like this and it's great. My throat was chapped on the inside from the constant hacking and coughing. Last night was the first night I slept from 11-8, besides rolling over from side to side. I use to wake up every 2hours with a mouth full of liquid and coughing my lungs up. Didn't wake up once last night to spit, which is the first in months, I can't believe it.

Hope everyone is doing well. I have my trusty friend connected to me this week, 5FU, 5 day treatment. One more to go and I'm done. Then about a month later I have my first PET which I am deathly scared of, scared to know the results that is. Of course we all want the best but I don't want to see Christmas lights in my throat this time if you know what I mean.

I need to start eating more, insurance is refusing to pay for more liquid food. I have about 2weeks left of my supply. I think I'm most nervous about that, the time frame, will I be ok eating on my own again. It's a lot of pressure and anxiety. I guess I will have to supplement with ensure or boost.

Happy Wednesday!

Ahoy mate!
Feels good to NOT
Ahoy mate!

Feels good to NOT drag around the kleenex doesn't it. I went through so much tissue my wife said we ought to buy stock in it.

I'm 13 weeks post treatment, 35 rads-7x once weekly cisplatin.

Initially I had no beard after treatment and the back of my head near the collar line was strangely bald. As of today: a No mas whiskers under the chin, hair in back is almost grown back to normal-but thicker, I have a full mustache and I have to shave daily.

Glad to hear you're almost off the "Grog"...

A great day to all,
Chuck.