Long term effects of radiation/ chemo

2»

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #22
    Duggie88 said:

    Mucous

    Three years out (matter of fact this saturday is exactly 3 years)and clearing my throat has become one of my trademarks. Although it has gotten better, I can't play hide and seek with the grandkids to long or else I have to clear my throat and give myself away. At night forget it, I still have a radiant glow that makes me "IT" more than I deserve.

     

    All kidding aside, They told me whatever I didn't get back or change within a year I most likely will be stuck with. Well, like I said this Saturday will be 3 years and I am still enjoying recooping, especially my voice which before cancer was really bassy.

    Long story short, enjoy your recovery it is different for everyone and everything you had and enjoyed before is still fare game.

    Enjoy the day

          Jeff

    Time...

    Jeff,

    Time is on myside... Rolling Stones...

    I can tell you, that I had improvements in both taste and saliva for two years plus... So while the MD's might give you those numbers.... Default to the;

    "We are all different"...

    Best,

    John

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #23
    Roar said:

    Your husband and I may be

    Your husband and I may be related- I to am sometimes known as mr. Miserable

    Roar,
    Welcome! Everybody is
    Roar,

    Welcome! Everybody is different, but some things seem the same. I lost most of my hearing 10years later in 2010(my dx was NPC III 35or 37 rads and concurrent cisplatin and 5fu, and three 3 weeks 24hr chemo 1 a month as what they called safety net, also have partial radical neck dissection)

    It seems like most of my side effects happen years later than should have, I didn't lose any teeth till 2008(get floride trays) and lik,e I said hearing in 2010, and dysghagia in 2012. The mucus has been with me since treatment improved but still there till today, ears drain constantly and occassionally have to go have wax sucked or pulled out, and the ringing! I don't know if anyone escapes the ringing, at first I thought it would drive me insane, but now I see it as white noise.

    Just take your recovery as it comes, they are crosses to bear, but what we got along with them is LIFE! Enjoy eeveryday despite the side effects.

    God Bless,

    Rachel
  • Duggie88
    Duggie88 Member Posts: 760 Member
    #24
    Skiffin16 said:

    Time...

    Jeff,

    Time is on myside... Rolling Stones...

    I can tell you, that I had improvements in both taste and saliva for two years plus... So while the MD's might give you those numbers.... Default to the;

    "We are all different"...

    Best,

    John

    I'm with ya John

    We are all individuals. My wife rolls her eyes and thanks god there is only one of me.

    Psssst..............I never told her about the voices.

     

          Jeff

     

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #25
    Duggie88 said:

    I'm with ya John

    We are all individuals. My wife rolls her eyes and thanks god there is only one of me.

    Psssst..............I never told her about the voices.

     

          Jeff

     

    Abi-Normal...

    You might be part of my Abi-Normal Clan after all....

  • Roar
    Roar Member Posts: 269 Member
    #26
    rachel12yrsuv said:

    Roar,
    Welcome! Everybody is
    Roar,

    Welcome! Everybody is different, but some things seem the same. I lost most of my hearing 10years later in 2010(my dx was NPC III 35or 37 rads and concurrent cisplatin and 5fu, and three 3 weeks 24hr chemo 1 a month as what they called safety net, also have partial radical neck dissection)

    It seems like most of my side effects happen years later than should have, I didn't lose any teeth till 2008(get floride trays) and lik,e I said hearing in 2010, and dysghagia in 2012. The mucus has been with me since treatment improved but still there till today, ears drain constantly and occassionally have to go have wax sucked or pulled out, and the ringing! I don't know if anyone escapes the ringing, at first I thought it would drive me insane, but now I see it as white noise.

    Just take your recovery as it comes, they are crosses to bear, but what we got along with them is LIFE! Enjoy eeveryday despite the side effects.

    God Bless,

    Rachel

    Thank you Rachel. So much to

    Thank you Rachel. So much to comment on:

    1- did you have tubes put in your ears? 

    2- the dentist gave me the trays when I started treatment but towards the end of treatment m mouth was so sore I couldn't do it anymore- are you saying I should continue fluoride treatments life long?

    3- the mucous- you think it's just a part of what we need to get used to? So you have a constant salty taste in your mouth?

    and the ringing - when I mention it to my doctor they all act like they never heard of this before 

  • Roar
    Roar Member Posts: 269 Member
    #27
    rachel12yrsuv said:

    Roar,
    Welcome! Everybody is
    Roar,

    Welcome! Everybody is different, but some things seem the same. I lost most of my hearing 10years later in 2010(my dx was NPC III 35or 37 rads and concurrent cisplatin and 5fu, and three 3 weeks 24hr chemo 1 a month as what they called safety net, also have partial radical neck dissection)

    It seems like most of my side effects happen years later than should have, I didn't lose any teeth till 2008(get floride trays) and lik,e I said hearing in 2010, and dysghagia in 2012. The mucus has been with me since treatment improved but still there till today, ears drain constantly and occassionally have to go have wax sucked or pulled out, and the ringing! I don't know if anyone escapes the ringing, at first I thought it would drive me insane, but now I see it as white noise.

    Just take your recovery as it comes, they are crosses to bear, but what we got along with them is LIFE! Enjoy eeveryday despite the side effects.

    God Bless,

    Rachel

    Thank you Rachel. So much to

    Thank you Rachel. So much to comment on:

    1- did you have tubes put in your ears? 

    2- the dentist gave me the trays when I started treatment but towards the end of treatment m mouth was so sore I couldn't do it anymore- are you saying I should continue fluoride treatments life long?

    3- the mucous- you think it's just a part of what we need to get used to? So you have a constant salty taste in your mouth?

    and the ringing - when I mention it to my doctor they all act like they never heard of this before 

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #28
    Roar said:

    Thank you Rachel. So much to

    Thank you Rachel. So much to comment on:

    1- did you have tubes put in your ears? 

    2- the dentist gave me the trays when I started treatment but towards the end of treatment m mouth was so sore I couldn't do it anymore- are you saying I should continue fluoride treatments life long?

    3- the mucous- you think it's just a part of what we need to get used to? So you have a constant salty taste in your mouth?

    and the ringing - when I mention it to my doctor they all act like they never heard of this before 

    Roar,
    1. No tubes in ear,
    Roar,

    1. No tubes in ear, they drain daily on their own so not needed

    2. When salvia or whatever it is comes back its thick and creates thicker phelm in my throat. I am not saying it will be life long for you, for me its been there the whole time.

    3. Salty taste goes away. I don't remember how long, but it did go away completely and I started to like a few things and couldn't tolerate others, I could eat only raw, onions, green peppers and broccolli(couldn't before), but I lost ability to eat a lot of fruit: strawberrys(unless whipped cream(they burn my tongue), oranges and juice, apples, grapes I can eat canned peaches pears bannanas watermellon and that's it.

    4. Yes use dental trays everyday, if you can get RX toothpaste and keep sticking 3 fingers in your mouth couple times a day, and get teeth clean every 6 months. I held on to my teeth for 8 years before loosing any and at 12 still have 7 or 8 mine.

    5. Ringing UGH, your ENT should address this its Tinnitis or something, I've seen quite a few people mention it on here.

    Ask anything you need!

    God Bless,

    Rachel
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #29
    Roar said:

    Thank you Rachel. So much to

    Thank you Rachel. So much to comment on:

    1- did you have tubes put in your ears? 

    2- the dentist gave me the trays when I started treatment but towards the end of treatment m mouth was so sore I couldn't do it anymore- are you saying I should continue fluoride treatments life long?

    3- the mucous- you think it's just a part of what we need to get used to? So you have a constant salty taste in your mouth?

    and the ringing - when I mention it to my doctor they all act like they never heard of this before 

    Roar on Side Effects..

    Some do have tubes, but it's not the norm...

    As for flouride, pretty much everyone here uses some form, be it trays, Prevident, I use Oral B STOP.. But it's pretty much a long term use..

    Not all keep the thick mucous life long, that's more uncommon than commor... My self and many here have regained nearly all of their saliva and taste back. It's just a long slow road for many... Myself the saliva took sevral months for it to be significant, two years to completely get back all taste.

    Like Rachel mentioned..Tinitus. That is the ringing, and more than likely Cisplatin induced..

    Communication with your MD's is key, and sounds like you are doing that. But if they aren't up to speed on a few things, you can always seek other opinions or care. You know you better than anyone does...

    Best,

    John

Discussion Boards