To tube or not to tube....

24

Comments

  • Guzzle
    Guzzle Member Posts: 710
    #22
    Hondo said:

    Hi Guzzle

     

     

    Ask yourself why not, I been through radiation twice without a PEG and lost almost 65lbs I went from being 230lbs to right now 143lbs and can’t gain any of it back. I was never offered a PEG by any of my Oncl dr, I look back on it now because now I live on a PEG tube and wonder why they did not saying something about using a PEG tube back then. It would have made going through treatment so much easier.  So ask yourself why not get a PEG.

    Just my take because my PEG tube is now my best friend.

     

    Hondo

    Back home

    Thanks team. I am meeting my MDT next wed and will discuss. Looking like 6 weeks Rt. As an experiment I ate a lot of high energy NHS food whilst inactive apart from light physio. Gained 6 pounds in 2 days with ease. I also ate a wide range of food on raw tonsil to test eating whilst in pain.I know RT will be worse but tried to treat it as fuel. I just want to get going now but they wont have it until totally healed. Exposing tonsil seems to have made it better after initial pain. Only on paracetomol for dissection but feel I may not need this. In much more worried about RT. But I hate the feeling that there are bits of cancer in me that need zapping. PJ it was SCC. Primary found on left tonsil. Surgeon seems pretty sure HPV but will get full pathology next week. Any thoughts on prognosis?

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #23
    Guzzle said:

    Back home

    Thanks team. I am meeting my MDT next wed and will discuss. Looking like 6 weeks Rt. As an experiment I ate a lot of high energy NHS food whilst inactive apart from light physio. Gained 6 pounds in 2 days with ease. I also ate a wide range of food on raw tonsil to test eating whilst in pain.I know RT will be worse but tried to treat it as fuel. I just want to get going now but they wont have it until totally healed. Exposing tonsil seems to have made it better after initial pain. Only on paracetomol for dissection but feel I may not need this. In much more worried about RT. But I hate the feeling that there are bits of cancer in me that need zapping. PJ it was SCC. Primary found on left tonsil. Surgeon seems pretty sure HPV but will get full pathology next week. Any thoughts on prognosis?

    You Are Going To Survive...

    Rough road, but you'll make it....

    Again, for me the tonsil healing was much more intense... But not until about the 4th day or so, post removal.

    Hard to say on recovery time, as for full treatment with RT. It really depends on how much damage your body takes. It does drain you going into the rough period of a few weeks in, until many weeks post. The period your body is taking full hits that are cumulative, and trying to repair itself on minimal calories....

    I switched over working from home for nearly nine months, but I mainly do computer related work.

    I did maintain my yard, mowing, edging, weed wacking edging, etc... I did end up letting a yard service do that for about a month or so in the thick of rads. Between the Florida heat and humidity, plus low energy levels from just surviving on the Ensure and water, it was hard to do much for more than 20 - 30 minutes.

    But I did go fishing in the boat, ride my bike and walk.. If I needed to stop, take in some water, or just rest, I let my body decide.

    You're going to make it, you will learn quickly what your energy levels are.

    John

  • KB56
    KB56 Member Posts: 318 Member
    #24
    Guzzle said:

    Back home

    Thanks team. I am meeting my MDT next wed and will discuss. Looking like 6 weeks Rt. As an experiment I ate a lot of high energy NHS food whilst inactive apart from light physio. Gained 6 pounds in 2 days with ease. I also ate a wide range of food on raw tonsil to test eating whilst in pain.I know RT will be worse but tried to treat it as fuel. I just want to get going now but they wont have it until totally healed. Exposing tonsil seems to have made it better after initial pain. Only on paracetomol for dissection but feel I may not need this. In much more worried about RT. But I hate the feeling that there are bits of cancer in me that need zapping. PJ it was SCC. Primary found on left tonsil. Surgeon seems pretty sure HPV but will get full pathology next week. Any thoughts on prognosis?

    Back Home

    Guzzle, glad you made it throught the tonsillectomy with flying colors.  I had the same treatment path that it looks like you're on, just mine was a year earlier.  For me the tonsillectomy was rough but doable and after about 10 days i was doing much better.    My ENT wouldn't let them start RT or Chemo for 3 weeks after the surgery (i did not have a neck dissection as my lymph nodes in the neck were supposed wrapped around so much stuff they didn't want to risk it).    

    The first couple of weeks the RT wasn't too bad.  Your mouth starts getting a little dryer and then you start to feel some of the effects as the radiation is a cumlative thing so each treatment (for me) was a little tougher than the one before.    As you've seen on the site before, everyone reacts different but you will most likely be tired, thirsty (no matter how much water I tried to drink I was always thirsty), get some radiation burns on your neck that they will give you stuff to treat, and other side effect.   My Chemo wasn't bad (I had Erbitux) and really the biggest side effect as Acne.

    You're doing great so far, have a VERY positive attitude and that is key.  Good luck as you continue the journey and fight the fight!

    Keith

  • Guzzle
    Guzzle Member Posts: 710
    #25
    KB56 said:

    Back Home

    Guzzle, glad you made it throught the tonsillectomy with flying colors.  I had the same treatment path that it looks like you're on, just mine was a year earlier.  For me the tonsillectomy was rough but doable and after about 10 days i was doing much better.    My ENT wouldn't let them start RT or Chemo for 3 weeks after the surgery (i did not have a neck dissection as my lymph nodes in the neck were supposed wrapped around so much stuff they didn't want to risk it).    

    The first couple of weeks the RT wasn't too bad.  Your mouth starts getting a little dryer and then you start to feel some of the effects as the radiation is a cumlative thing so each treatment (for me) was a little tougher than the one before.    As you've seen on the site before, everyone reacts different but you will most likely be tired, thirsty (no matter how much water I tried to drink I was always thirsty), get some radiation burns on your neck that they will give you stuff to treat, and other side effect.   My Chemo wasn't bad (I had Erbitux) and really the biggest side effect as Acne.

    You're doing great so far, have a VERY positive attitude and that is key.  Good luck as you continue the journey and fight the fight!

    Keith

    Good advice

    Thanks. Have a good few weeks to prepare and will then treat it as a battle. Seeing the quality of life you all have now is a big incentive. Florida sun sounds good John. We have Irish sea mist! The only surgery impact seems to be a very numb ear and neck. Whats your follow up regime. In told every 6 to nine weeks first year. Dr. Also spoke of clinical trial to blast HPV from your system but was vague. As stated looks like mortgage is gonna be paid off by insurance so one less thing to worry about. If any of you visit UK you have to visit. Cheers.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #26
    Guzzle said:

    Back home

    Thanks team. I am meeting my MDT next wed and will discuss. Looking like 6 weeks Rt. As an experiment I ate a lot of high energy NHS food whilst inactive apart from light physio. Gained 6 pounds in 2 days with ease. I also ate a wide range of food on raw tonsil to test eating whilst in pain.I know RT will be worse but tried to treat it as fuel. I just want to get going now but they wont have it until totally healed. Exposing tonsil seems to have made it better after initial pain. Only on paracetomol for dissection but feel I may not need this. In much more worried about RT. But I hate the feeling that there are bits of cancer in me that need zapping. PJ it was SCC. Primary found on left tonsil. Surgeon seems pretty sure HPV but will get full pathology next week. Any thoughts on prognosis?

    guzzle, praying for your tx

    guzzle, praying for your tx to get started and to go smoothly.  i like many others had a couple feeding tubes.  it was all i used for a while.  then it fell out, i had it put back in, it fell out again and they couldn't get it back in so i had to start eating.  praying all goes well for you.

    God bless,

    dj

  • Guzzle
    Guzzle Member Posts: 710
    #27
    debbiejeanne said:

    guzzle, praying for your tx

    guzzle, praying for your tx to get started and to go smoothly.  i like many others had a couple feeding tubes.  it was all i used for a while.  then it fell out, i had it put back in, it fell out again and they couldn't get it back in so i had to start eating.  praying all goes well for you.

    God bless,

    dj

    Food..

    Thanks dj. It will be a first for me to have trouble eating! Thanks for your kind thoughts.

  • donfoo
    donfoo Member Posts: 1,773 Member
    #28
    Guzzle said:

    Back home

    Thanks team. I am meeting my MDT next wed and will discuss. Looking like 6 weeks Rt. As an experiment I ate a lot of high energy NHS food whilst inactive apart from light physio. Gained 6 pounds in 2 days with ease. I also ate a wide range of food on raw tonsil to test eating whilst in pain.I know RT will be worse but tried to treat it as fuel. I just want to get going now but they wont have it until totally healed. Exposing tonsil seems to have made it better after initial pain. Only on paracetomol for dissection but feel I may not need this. In much more worried about RT. But I hate the feeling that there are bits of cancer in me that need zapping. PJ it was SCC. Primary found on left tonsil. Surgeon seems pretty sure HPV but will get full pathology next week. Any thoughts on prognosis?

    100% thru recovery

    I love your attitude and quest for knowing. Personally, I want to see the train if I'm getting run over. You will be consumed with maintaining your heatlh through treatment, consuming sufficient nutrition and liquids, and keeping the pain under control. Focus on that for now through treatment, then focus on addressing the side effects from treatment during your recovery.

    Prognosis is something I avoided intentionally as it was a distraction to the tasks at hand: getting through treatment and recovery, a lengthy process. A distraction you say! It is because there is no sense to it. It is at best a broad statistic or rule against to measure up various cancers. It has no ability in anyway to indicate how YOU will do, plain and simple. So, if you want to compare morbity tables and charts between oral cancer and pancreatic or liver cancer, have at it. But getting into the details of surivability goes nowhere useful for individuals fighting the beast.

  • PJ47
    PJ47 Member Posts: 376
    #29
    Guzzle said:

    Back home

    Thanks team. I am meeting my MDT next wed and will discuss. Looking like 6 weeks Rt. As an experiment I ate a lot of high energy NHS food whilst inactive apart from light physio. Gained 6 pounds in 2 days with ease. I also ate a wide range of food on raw tonsil to test eating whilst in pain.I know RT will be worse but tried to treat it as fuel. I just want to get going now but they wont have it until totally healed. Exposing tonsil seems to have made it better after initial pain. Only on paracetomol for dissection but feel I may not need this. In much more worried about RT. But I hate the feeling that there are bits of cancer in me that need zapping. PJ it was SCC. Primary found on left tonsil. Surgeon seems pretty sure HPV but will get full pathology next week. Any thoughts on prognosis?

    Nothing is etched in stone

    One oncologist told me I had a 50% chance of survival and I was HPV+.  I chose not to see her again!  Two other oncologists and my surgeon said I had an 85% chance of survival and that SCC HPV+ is "very treatable and responsive."  

    No one knows, but it seems that HPV+ is a positive indicator.

    BTW you will want to heal completely before RT.  The throat tissues need to heal before they are assaulted with radiation!  Try to be patient and not aggrivate your surgical site too much.

    PJ

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #30
    Guzzle said:

    Good advice

    Thanks. Have a good few weeks to prepare and will then treat it as a battle. Seeing the quality of life you all have now is a big incentive. Florida sun sounds good John. We have Irish sea mist! The only surgery impact seems to be a very numb ear and neck. Whats your follow up regime. In told every 6 to nine weeks first year. Dr. Also spoke of clinical trial to blast HPV from your system but was vague. As stated looks like mortgage is gonna be paid off by insurance so one less thing to worry about. If any of you visit UK you have to visit. Cheers.

    Follow-Ups

    For me...

    First year I had follow-ups every 6 - 8 weeks with my ENT and Onco, six months with RT MD. Having a port, I also had to have that flushed every 6 - 8 weeks..., my onco left it in for two years as those are the milestone years.

    I also have had a CT or PET every six months since.., going into my 5th year now..., hoping that is winding down.

    After the first year the follow-up scopes were extended out to every 3 - 4 months, then six months after year two.., and still on that schedule.

    Onco, moved to six months, same routine now, mainly monitoring blood and scans...

    RT follow-ups ended after first year...

    JG

  • Guzzle
    Guzzle Member Posts: 710
    #31
    PJ47 said:

    Nothing is etched in stone

    One oncologist told me I had a 50% chance of survival and I was HPV+.  I chose not to see her again!  Two other oncologists and my surgeon said I had an 85% chance of survival and that SCC HPV+ is "very treatable and responsive."  

    No one knows, but it seems that HPV+ is a positive indicator.

    BTW you will want to heal completely before RT.  The throat tissues need to heal before they are assaulted with radiation!  Try to be patient and not aggrivate your surgical site too much.

    PJ

    RT

    Thanks. Surgery went so well I cant believe Im unwell. A bit surreal. Just going to take a gentle walk as physio told me to take it easy. Wish I could start RT tomorrow and get it out of the way but between now and then healing well so far. How about preparation for RT? Certainly keeping weight up and hydration. Any other tips team?

  • Hondo
    Hondo Member Posts: 6,636 Member
    #32
    Guzzle said:

    RT

    Thanks. Surgery went so well I cant believe Im unwell. A bit surreal. Just going to take a gentle walk as physio told me to take it easy. Wish I could start RT tomorrow and get it out of the way but between now and then healing well so far. How about preparation for RT? Certainly keeping weight up and hydration. Any other tips team?

    Hi Guzzle

     

    Glad to hear the surgery is out of the way, one down and one more to go. Keep your positive attitude and you are going to do well.

     

    Hondo

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #33
    Guzzle said:

    RT

    Thanks. Surgery went so well I cant believe Im unwell. A bit surreal. Just going to take a gentle walk as physio told me to take it easy. Wish I could start RT tomorrow and get it out of the way but between now and then healing well so far. How about preparation for RT? Certainly keeping weight up and hydration. Any other tips team?

    Eat...

    Eat what you like and enjoy the taste and flavor....

    More than likely very soon after you start the RT, you're going to lose your taste (and saliva) for a very long time...

    Most start getting some back within a month or two, and usually enough to survive and be comfortable if it didn't improve further. But many take several months or even in my case it took two years to totally get 100% back, and nearly all of my saliva. I still dry out during the night when sleeping.

    The longest for me was sweet, like ice cream and such.. I would taste the first bite or two, then it would go away..

    John

     

  • KB56
    KB56 Member Posts: 318 Member
    #34
    Skiffin16 said:

    Eat...

    Eat what you like and enjoy the taste and flavor....

    More than likely very soon after you start the RT, you're going to lose your taste (and saliva) for a very long time...

    Most start getting some back within a month or two, and usually enough to survive and be comfortable if it didn't improve further. But many take several months or even in my case it took two years to totally get 100% back, and nearly all of my saliva. I still dry out during the night when sleeping.

    The longest for me was sweet, like ice cream and such.. I would taste the first bite or two, then it would go away..

    John

     

    Sweet

    John, same for me on the sweet... It was the last one to come back but it did come back within a couple of months.  Fruit still taste a little different 9 months post TX.  Just not as good as it used to be.

     

    Keith

  • Guzzle
    Guzzle Member Posts: 710
    #35
    KB56 said:

    Sweet

    John, same for me on the sweet... It was the last one to come back but it did come back within a couple of months.  Fruit still taste a little different 9 months post TX.  Just not as good as it used to be.

     

    Keith

    sweet tooth

    Luckily guys not got a sweet tooth!I do hope to enjoy the odd beer when I recover though. I suppose you just enjoy the tastes that you can? And from what you say during RT just treat it like fuel. Its easier having an idea what your going into! I think the food processor will be getting a blasting!

  • KB56
    KB56 Member Posts: 318 Member
    #36
    Guzzle said:

    sweet tooth

    Luckily guys not got a sweet tooth!I do hope to enjoy the odd beer when I recover though. I suppose you just enjoy the tastes that you can? And from what you say during RT just treat it like fuel. Its easier having an idea what your going into! I think the food processor will be getting a blasting!

    Beer

    Guzzle, I used to enjoy beer and red wine.  I can still enjoy a beer or two but red wine is a little more challenging in that my mouth is already somewhat dry and having a nice Cab or full bodied wine just dries me out even more and I pay for it all night long.  My wife says if I don't start drinking red wine again she is going to divorce me and I think she was serious!

    You will still be able to enjoy those nice UK beers!  

    Keith

  • Guzzle
    Guzzle Member Posts: 710
    #37
    KB56 said:

    Beer

    Guzzle, I used to enjoy beer and red wine.  I can still enjoy a beer or two but red wine is a little more challenging in that my mouth is already somewhat dry and having a nice Cab or full bodied wine just dries me out even more and I pay for it all night long.  My wife says if I don't start drinking red wine again she is going to divorce me and I think she was serious!

    You will still be able to enjoy those nice UK beers!  

    Keith

    Beer

    Keith red wine will be a sad loss. But having a beer watching Liverpool FC is something to look forward to! How long before any of you good people took a flight/vacation post Rt?

     

    And Rick you will be safe from divorce. More red for the missus! 

  • Ron Silver
    Ron Silver Member Posts: 94
    #38
    Survival

    Below is a link to the September 2010 edition of "The Oncologist."  The article is titled:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3228039/

    Changes in Survival in Head and Neck Cancers in the Late 20th and Early 21st Century: A Period Analysis

    It refers to SEER, i.e., Surveillance, Epidemiology, and End Results limited-use database.

    See also:

    http://seer.cancer.gov/about/news/

    http://seer.cancer.gov/csr/1975_2010/browse_csr.php?sectionSEL=20&pageSEL=sect_20_table.10.html

     

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #39
    Beer, Wine and Vacationing... ~ LOL

    I'm ready..., LOL...

    It didn't really take me too long before I could drink a cold beer and have all of the taste, and I'm not a big wine drinker... But like I said, I do have all of my taste back now, and I do know that wine still tastes the same for me.

    I tend to like the drier wines, and they all taste good.

    As for travel, I think the only restrictions will be ones you decide on.. I traveled relatively soon after rads with no problems..

    I'd say one of the things that you need to think about is that you're gonna have a bottle of water with you 24/7 for awhile.

    Myself, I couldn't speak a complete sentence without a sip of water. A sip of water with every bite of food...

    Another consideration not mentioned.., blood work.

    It took nearly a year before all of my blood counts and levels returned to normal.

    But again, I also had three big doses of Cisplatin, Taxotere and 5FU.. My blood counts would go really low at times, dropping below 2.0. I'd get an injection of Neulasta the week following those heavy doses of chemo.

    But during the concurrent weekly doses of Carboplatin and daily RT, they just did blood work every week just before chemo to check if my counts were high enough to receive the chemo.

     

    John

  • Guzzle
    Guzzle Member Posts: 710
    #40
    Skiffin16 said:

    Beer, Wine and Vacationing... ~ LOL

    I'm ready..., LOL...

    It didn't really take me too long before I could drink a cold beer and have all of the taste, and I'm not a big wine drinker... But like I said, I do have all of my taste back now, and I do know that wine still tastes the same for me.

    I tend to like the drier wines, and they all taste good.

    As for travel, I think the only restrictions will be ones you decide on.. I traveled relatively soon after rads with no problems..

    I'd say one of the things that you need to think about is that you're gonna have a bottle of water with you 24/7 for awhile.

    Myself, I couldn't speak a complete sentence without a sip of water. A sip of water with every bite of food...

    Another consideration not mentioned.., blood work.

    It took nearly a year before all of my blood counts and levels returned to normal.

    But again, I also had three big doses of Cisplatin, Taxotere and 5FU.. My blood counts would go really low at times, dropping below 2.0. I'd get an injection of Neulasta the week following those heavy doses of chemo.

    But during the concurrent weekly doses of Carboplatin and daily RT, they just did blood work every week just before chemo to check if my counts were high enough to receive the chemo.

     

    John

    Goog news

    You guys are full of good news. And LFC won again last night. When you said eat everything you like before commncing RT john that gave me a boost. May even have a few beers....

  • donfoo
    donfoo Member Posts: 1,773 Member
    #41
    Guzzle said:

    Goog news

    You guys are full of good news. And LFC won again last night. When you said eat everything you like before commncing RT john that gave me a boost. May even have a few beers....

    whatever.......

    Ditto - Savor everything you like to eat and drink before rads. Eat without abandon. Any weight you might gain now will certainly come back off during rads. Everyone returns with some change in tastes post tx. So double lock all your favorite favors away now. :-)

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