NPC survival side effect

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Comments

  • Scambuster
    Scambuster Member Posts: 973
    #22
    frank10g said:

    Thank you friends for
    Thank you friends for replying to my post. It seems we all have almost similar side effects from radiation treatment. I am flying to KL next week to check with the ENT. I am in Jakarta Indonesia. Paul, I take herbal supplements daily as prescribed by an alternative medicine doctor. Well meaning friends and relative have advised me millions of advises on what to take as supplements. I am confused and end up with this alternative herbal thing. This doctor has pretty good reputation.
    Larla, why is swallowing hard for you? is it dry?
    Frank

    Ears blocked.
    About 1-2 months out I was goin very deaf. I saw my ENT and he had a look in and said "Your Eustacian tubes are blocked". I then 'equalized, and within minutes my hearing returned to normal. Best to be careful doing this and have your ENT guide you. I hope your cases are as simple. rads and Chemo does mess with your body, much of it is temporary but it can be months before things normalize.

    Only now, almost 1 year out, can I clear my nasal cavity, and I can now sneeze normally. I have 2 little kids and when we sing "Old McDoonald had a farm..." I still can't do the Pig snort sound, but I can feel it coming on so thing must be still repairing.

    Frank, glad to hear you are on herbal remedies, if you wouldn't mind I would interested to hear what you are using. The more information I get, the better. you can PM me if you prefer.

    PJ, if you do need Animal protein, oily fish is best, pork is not on the 'good' list at all (Sorry) ;o(

    Best regds to all
    Scam.
  • frank10g
    frank10g Member Posts: 37
    #23
    Scambuster said:

    Ears blocked.
    About 1-2 months out I was goin very deaf. I saw my ENT and he had a look in and said "Your Eustacian tubes are blocked". I then 'equalized, and within minutes my hearing returned to normal. Best to be careful doing this and have your ENT guide you. I hope your cases are as simple. rads and Chemo does mess with your body, much of it is temporary but it can be months before things normalize.

    Only now, almost 1 year out, can I clear my nasal cavity, and I can now sneeze normally. I have 2 little kids and when we sing "Old McDoonald had a farm..." I still can't do the Pig snort sound, but I can feel it coming on so thing must be still repairing.

    Frank, glad to hear you are on herbal remedies, if you wouldn't mind I would interested to hear what you are using. The more information I get, the better. you can PM me if you prefer.

    PJ, if you do need Animal protein, oily fish is best, pork is not on the 'good' list at all (Sorry) ;o(

    Best regds to all
    Scam.

    Private Message
    I sent you a PM.
    Frank
  • Larla
    Larla Member Posts: 28
    #24
    frank10g said:

    Thank you friends for
    Thank you friends for replying to my post. It seems we all have almost similar side effects from radiation treatment. I am flying to KL next week to check with the ENT. I am in Jakarta Indonesia. Paul, I take herbal supplements daily as prescribed by an alternative medicine doctor. Well meaning friends and relative have advised me millions of advises on what to take as supplements. I am confused and end up with this alternative herbal thing. This doctor has pretty good reputation.
    Larla, why is swallowing hard for you? is it dry?
    Frank

    swallowing
    I don't have trouble swallowing most foods.I do have to be careful I chew well enough because of scar tissue and avoid meats like beef and pork.My salivary glands did recover somewhat after treatment but I always have water with me and use Biotene mouthwash to help with my dry mouth.It sounds like you have a good team supporting you.Good luck with everything.
    Larla
  • PaulJoseph
    PaulJoseph Member Posts: 13
    #25
    Larla said:

    swallowing
    I don't have trouble swallowing most foods.I do have to be careful I chew well enough because of scar tissue and avoid meats like beef and pork.My salivary glands did recover somewhat after treatment but I always have water with me and use Biotene mouthwash to help with my dry mouth.It sounds like you have a good team supporting you.Good luck with everything.
    Larla

    Ringing sound
    May I know if anyone still continue disturb by ringing sound in the ear?
    Sometimes it loud n sometimes normal. Sometimes it really disturb me espiacially before i sleep and after wake up in the morning.
    Any idea to cure or reduce it?
  • Hondo
    Hondo Member Posts: 6,636 Member
    #26
    PaulJoseph said:

    Ringing sound
    May I know if anyone still continue disturb by ringing sound in the ear?
    Sometimes it loud n sometimes normal. Sometimes it really disturb me espiacially before i sleep and after wake up in the morning.
    Any idea to cure or reduce it?

    Hi Paul


    I still get the ringing but it is not a bad or I am getting use to it, not sure what one. Nothing that I found so far to do for it, try and ask your ENT and see what he may suggest

    Take care
  • PaulJoseph
    PaulJoseph Member Posts: 13
    #27
    Hondo said:

    Hi Paul


    I still get the ringing but it is not a bad or I am getting use to it, not sure what one. Nothing that I found so far to do for it, try and ask your ENT and see what he may suggest

    Take care

    Cancer Recur again...so sad n fear
    Wat happen to me? Why so cruel? My father just pass away on 17th October and on 26th October, my x-ray n ct-scan show cancer have spread to my both lung nodes.

    Doctor advice 3 round of chemo with 1 round chemo every 3 weeks to control it.

    I feel so depressed, fear n loss...why??

    I only 40yrs old n my kids is still small...

    where is hope..

    please...anyone can share your experience on cancer recurrance n how to face it strongly!

    Help me..Lord Jesus..Heal me, cure me n strengthen me with new hope n love...please..
  • frank10g
    frank10g Member Posts: 37
    #28
    PaulJoseph said:

    Cancer Recur again...so sad n fear
    Wat happen to me? Why so cruel? My father just pass away on 17th October and on 26th October, my x-ray n ct-scan show cancer have spread to my both lung nodes.

    Doctor advice 3 round of chemo with 1 round chemo every 3 weeks to control it.

    I feel so depressed, fear n loss...why??

    I only 40yrs old n my kids is still small...

    where is hope..

    please...anyone can share your experience on cancer recurrance n how to face it strongly!

    Help me..Lord Jesus..Heal me, cure me n strengthen me with new hope n love...please..

    Private Message
    Hi Paul,
    I sent you a private message through this board.
    Stay encouraged, brother!
    Frank
  • Pam M
    Pam M Member Posts: 2,196
    #29
    PaulJoseph said:

    Cancer Recur again...so sad n fear
    Wat happen to me? Why so cruel? My father just pass away on 17th October and on 26th October, my x-ray n ct-scan show cancer have spread to my both lung nodes.

    Doctor advice 3 round of chemo with 1 round chemo every 3 weeks to control it.

    I feel so depressed, fear n loss...why??

    I only 40yrs old n my kids is still small...

    where is hope..

    please...anyone can share your experience on cancer recurrance n how to face it strongly!

    Help me..Lord Jesus..Heal me, cure me n strengthen me with new hope n love...please..

    Hello PaulJoseph
    Very sorry to hear about your father and reoccurance. Asking for help for you. We have survivors who have been through this. Hope they post soon.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #30
    PaulJoseph said:

    Cancer Recur again...so sad n fear
    Wat happen to me? Why so cruel? My father just pass away on 17th October and on 26th October, my x-ray n ct-scan show cancer have spread to my both lung nodes.

    Doctor advice 3 round of chemo with 1 round chemo every 3 weeks to control it.

    I feel so depressed, fear n loss...why??

    I only 40yrs old n my kids is still small...

    where is hope..

    please...anyone can share your experience on cancer recurrance n how to face it strongly!

    Help me..Lord Jesus..Heal me, cure me n strengthen me with new hope n love...please..

    Hi Paul, hang in there my
    Hi Paul, hang in there my brother, we are praying for you
  • adventurebob
    adventurebob Member Posts: 691
    #31
    PaulJoseph said:

    Cancer Recur again...so sad n fear
    Wat happen to me? Why so cruel? My father just pass away on 17th October and on 26th October, my x-ray n ct-scan show cancer have spread to my both lung nodes.

    Doctor advice 3 round of chemo with 1 round chemo every 3 weeks to control it.

    I feel so depressed, fear n loss...why??

    I only 40yrs old n my kids is still small...

    where is hope..

    please...anyone can share your experience on cancer recurrance n how to face it strongly!

    Help me..Lord Jesus..Heal me, cure me n strengthen me with new hope n love...please..

    Strength
    Hi Paul. I am so sorry for your reoccurence. I don't have any experience with that as I am still going through my first treatment but I can tell you that my strength comes from God as does yours. It also comes from my friends and my family and the people on this board. Sometimes it just comes in wacky humorous moments that take away the pain and fear. I refresh it with lots of prayer, good music, good books and good love that I give as well as get. Right now it is being refreshed by writing to you as I shed tears for your pain. I am sorry your path has turned in this direction. You will not be walking it alone. You are in my thoughts and prayers.

    Bob
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #32
    adventurebob said:

    Strength
    Hi Paul. I am so sorry for your reoccurence. I don't have any experience with that as I am still going through my first treatment but I can tell you that my strength comes from God as does yours. It also comes from my friends and my family and the people on this board. Sometimes it just comes in wacky humorous moments that take away the pain and fear. I refresh it with lots of prayer, good music, good books and good love that I give as well as get. Right now it is being refreshed by writing to you as I shed tears for your pain. I am sorry your path has turned in this direction. You will not be walking it alone. You are in my thoughts and prayers.

    Bob

    Paul
    Be certain of the fact we are all saddened by your reoccurence, and the spread. A 2nd bout with the C is a common dred we all share, and now you are there. I'm now just shy of 19-months, post-treatment, for NPC w/unknown Primary.

    If I have to fight the battle again, I'll do so with the lessons learned from the first bout, Paul, and hope you will, also. No denying the severity of the lungs issue, and I hope your Drs. are taking the most aggressive course with that issue- make sure they are. Other than that, just do what you gotta get done with treatments and Nutrition-intake, and fight the best fight you got in you. Only way to get that done is to stay Positive, and believe you can win it, Paul. A lot is possible- if you really believe. And, anything is possible with the Lord, Paul. Anything.

    Believe

    kcass
  • janymac
    janymac Member Posts: 35
    #33
    Kent Cass said:

    Paul
    Be certain of the fact we are all saddened by your reoccurence, and the spread. A 2nd bout with the C is a common dred we all share, and now you are there. I'm now just shy of 19-months, post-treatment, for NPC w/unknown Primary.

    If I have to fight the battle again, I'll do so with the lessons learned from the first bout, Paul, and hope you will, also. No denying the severity of the lungs issue, and I hope your Drs. are taking the most aggressive course with that issue- make sure they are. Other than that, just do what you gotta get done with treatments and Nutrition-intake, and fight the best fight you got in you. Only way to get that done is to stay Positive, and believe you can win it, Paul. A lot is possible- if you really believe. And, anything is possible with the Lord, Paul. Anything.

    Believe

    kcass

    I am worried
    Hi.Haven't been here for a while. But now I am worried as I am losing weight fast - about a pound every 4 days without even trying. Having intermittent massive upper abdominal pain - not many, but they ae really bad that goes to my back as well as front - have to go on all fours. By blood pressure has been really hard to keep under control, but we have finally got there. Feel really exhausted. Don't want to go and see my GP as I always seem to be complaining about all sorts of strange things ( I have all sorts of long term side effects from NCP treatment 9 years ago - including massive neuralgia for which I take carbamazepine to contol it). Really worried a secondary may be arising. Does anyone know where secondaries tend to settle other than the lung and how long after the original it can appear? There seem to be very little information out there on this.
  • rozaroo
    rozaroo Member Posts: 665
    #34
    janymac said:

    I am worried
    Hi.Haven't been here for a while. But now I am worried as I am losing weight fast - about a pound every 4 days without even trying. Having intermittent massive upper abdominal pain - not many, but they ae really bad that goes to my back as well as front - have to go on all fours. By blood pressure has been really hard to keep under control, but we have finally got there. Feel really exhausted. Don't want to go and see my GP as I always seem to be complaining about all sorts of strange things ( I have all sorts of long term side effects from NCP treatment 9 years ago - including massive neuralgia for which I take carbamazepine to contol it). Really worried a secondary may be arising. Does anyone know where secondaries tend to settle other than the lung and how long after the original it can appear? There seem to be very little information out there on this.

    Paul
    I am sorry to hear about your father & your reocurrence! Stay strong & remember we are all here for you.
    God Bless
    roz
  • Scambuster
    Scambuster Member Posts: 973
    #35
    janymac said:

    I am worried
    Hi.Haven't been here for a while. But now I am worried as I am losing weight fast - about a pound every 4 days without even trying. Having intermittent massive upper abdominal pain - not many, but they ae really bad that goes to my back as well as front - have to go on all fours. By blood pressure has been really hard to keep under control, but we have finally got there. Feel really exhausted. Don't want to go and see my GP as I always seem to be complaining about all sorts of strange things ( I have all sorts of long term side effects from NCP treatment 9 years ago - including massive neuralgia for which I take carbamazepine to contol it). Really worried a secondary may be arising. Does anyone know where secondaries tend to settle other than the lung and how long after the original it can appear? There seem to be very little information out there on this.

    Seek Advice - new Doctor maybe??
    Janymac,

    You might want to post this on a new thread. I think you need some quick and thorough examination. If you feel you have burned out your Doctor(s), maybe seek to find a new Doctor, but those symptoms need attention.

    Scam
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #36
    Scambuster said:

    Seek Advice - new Doctor maybe??
    Janymac,

    You might want to post this on a new thread. I think you need some quick and thorough examination. If you feel you have burned out your Doctor(s), maybe seek to find a new Doctor, but those symptoms need attention.

    Scam

    Janymac
    Good to hear from you again, though not the news you bring. Agree with Scam. Wish I could help. Seems like a PetScan, with your history, is in order. If you go this route, Janymac, please keep us informed. Again, it is good to hear from you.

    Believe

    kcass

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