need some help....

I was just diagnosed with stage 3 neck cancer. It bagan in My left tonsil then moved to two lymph nodes in my neck. I had surgery to remove the tonsil and the two lymph node. I had My firts chemo treamment yesterday (2/26) and I am going to have My first chemo treatment Monday (3/2). I am having chemo one day a week and radiation everyday Monday through Friday.

Having read what everyone has gone through with radiation burns on and in their neck....saliva drying up....unable to swallow etc it seems many of those that I have read have gotten feeding tubes and that is where I am having trouble...I have two doctors one for My radiation and one for My chemo. The that is in charge of My radiation says lets wait and seed if 3 weeks down the road I need a feeding tube...I might now....the doctor that is handling My Chemo says he wants Me to get one immediately before I start having problems. He doesnt want to interrupt treatment to put the tube in....he doesnt one to risk Me getting dehydrated and loss of weight and having the possibility of having to go into the hospital to have the tube put in....get rehydrated and having to fight this fight having lost a bunch of weight I didnt need to lose when I am going to lose enough as it is

I would like to get some replies back both ways.....some getting feeding tubes and anyone who made it through without getting feeding tubes....

 

Wish Me luck

Bud

Comments

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    Hi Bud,
    I'm sorry you are

    Hi Bud,

    I'm sorry you are going through this and have to be here. This is a great forum with a lot of helpful, caring members who understand what you are going through.

    i did not have a feeding tube. My doctors took the position that I did not need one until i needed one. In other words, they wanted me to go it without the tube mostly because it's very important to keep swallowing. It was very hard to eat during treatment. It was a struggle, I wont say that it wasn't but I was able to power through it. I had inpatient radiation once a day for 5 days along with 24 hour chemo. Then I was home for 9 days times 7.

    I'm sure others who has the tube will chime in with their experience. Hang in there. You'll get through it. Be strong!!

     

     

     

     

     

  • BudStamm
    BudStamm Member Posts: 19
    Bunnymom said:

    Hi Bud,
    I'm sorry you are

    Hi Bud,

    I'm sorry you are going through this and have to be here. This is a great forum with a lot of helpful, caring members who understand what you are going through.

    i did not have a feeding tube. My doctors took the position that I did not need one until i needed one. In other words, they wanted me to go it without the tube mostly because it's very important to keep swallowing. It was very hard to eat during treatment. It was a struggle, I wont say that it wasn't but I was able to power through it. I had inpatient radiation once a day for 5 days along with 24 hour chemo. Then I was home for 9 days times 7.

    I'm sure others who has the tube will chime in with their experience. Hang in there. You'll get through it. Be strong!!

     

     

     

     

     

    oops....sorry

    I just ready My post....wow alot of typos....sorry....guess that shows where My mind is at the moment.....

  • Sailor123
    Sailor123 Member Posts: 97
    Hi Bud:
    I was given the same

    Hi Bud:

    I was given the same counsel your chemo doc is giving you and i'm forever grateful for that advice.  Some people do make it through without feeding tubes but there is an overwhelming number that seem to feel it was a lifesaver.

    Turning into a skeleton is a real possibility that I wanted to avoid if at all possible.  Its also totally different getting the tube put in when your system is already compromised.  Whether you use the tube for food or not you will most definatly use it to stay hydrated.  The amount of water you will need is a tall order to drink when swallowing becomes difficult.  Its not as if you start eating normally again when treatment ends.  Therefore the weight loss can continue long after the treatment stops.  

    Lastly, it is much easier to bounce back from this if you don't lose to much lean muscle mass.  I lost none, and only lost nine pounds.  It seems to me that when the body is under attack the last thing you want to do is starve it.  People going through this treatment live on cans of formula made in a lab somewhere.  Its barbaric. My advice is get the tube and get a vitamix.  I had outstanding nutrition throughout the entire process and though I suffered plenty I credit the nutrition with my good health today.  I'm ten months post treatment and even in the best of circumstances this treatment cut me off at the knees.  Without the tube I would have been hospitalized for dehydration and malnutrition for sure.

    Your just beginning the journey and you will be fine eventually.  We have an amazing ability to withstand pain and suffering.  Its already starting to feel like a distant memory to me.  The details are fading.  My doctors said to plan on a whole year before I felt normal again and they weren't too far off.

    This is just my experience of course.

    Best of luck to you.

  • KTeacher
    KTeacher Member Posts: 1,103
    BudStamm said:

    oops....sorry

    I just ready My post....wow alot of typos....sorry....guess that shows where My mind is at the moment.....

    Don't worry

    Don't worry about spelling, grammar, we all understand.  I never had a feeding tube, but I did have weight to lose..  It gets difficult, as you have probably have read about.  Keep trying, eat soft food when needed.  Add protein to as much as you can, it helps in healing.  I lived on smoothies, cream of wheat, pudding, jello.  You can do it and if needed, others have had tube put in after treatment began.

  • Sailor123
    Sailor123 Member Posts: 97
    Sailor123 said:

    Hi Bud:
    I was given the same

    Hi Bud:

    I was given the same counsel your chemo doc is giving you and i'm forever grateful for that advice.  Some people do make it through without feeding tubes but there is an overwhelming number that seem to feel it was a lifesaver.

    Turning into a skeleton is a real possibility that I wanted to avoid if at all possible.  Its also totally different getting the tube put in when your system is already compromised.  Whether you use the tube for food or not you will most definatly use it to stay hydrated.  The amount of water you will need is a tall order to drink when swallowing becomes difficult.  Its not as if you start eating normally again when treatment ends.  Therefore the weight loss can continue long after the treatment stops.  

    Lastly, it is much easier to bounce back from this if you don't lose to much lean muscle mass.  I lost none, and only lost nine pounds.  It seems to me that when the body is under attack the last thing you want to do is starve it.  People going through this treatment live on cans of formula made in a lab somewhere.  Its barbaric. My advice is get the tube and get a vitamix.  I had outstanding nutrition throughout the entire process and though I suffered plenty I credit the nutrition with my good health today.  I'm ten months post treatment and even in the best of circumstances this treatment cut me off at the knees.  Without the tube I would have been hospitalized for dehydration and malnutrition for sure.

    Your just beginning the journey and you will be fine eventually.  We have an amazing ability to withstand pain and suffering.  Its already starting to feel like a distant memory to me.  The details are fading.  My doctors said to plan on a whole year before I felt normal again and they weren't too far off.

    This is just my experience of course.

    Best of luck to you.

    I should add that I would

    I should add that I would have lived on formula to if I hadn't discovered an herbalist/nutritionist who knew all about this particular cancer.  The doctors i've come in contact with all tried to scare me out of putting real food in my tube.  I did my own thing and am glad I did.

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    Bunnymom said:

    Hi Bud,
    I'm sorry you are

    Hi Bud,

    I'm sorry you are going through this and have to be here. This is a great forum with a lot of helpful, caring members who understand what you are going through.

    i did not have a feeding tube. My doctors took the position that I did not need one until i needed one. In other words, they wanted me to go it without the tube mostly because it's very important to keep swallowing. It was very hard to eat during treatment. It was a struggle, I wont say that it wasn't but I was able to power through it. I had inpatient radiation once a day for 5 days along with 24 hour chemo. Then I was home for 9 days times 7.

    I'm sure others who has the tube will chime in with their experience. Hang in there. You'll get through it. Be strong!!

     

     

     

     

     

    I should also say that

    I should also say that without the feeding tube I lost 35 lbs in 4 months. I could hardly eat anything. That's not necessarily a good thing. Ensure is bad news. I used a nutritional product called ENU. It doesn't have refined sugar and all the junk that ensure has. check out their website for the full nutritional info.

  • phrannie51
    phrannie51 Member Posts: 4,716
    Hi Bud...and welcome to the club

    nobody wants to join.

    I can understand both sides of this arguement....and I think it's crappy that the Drs. don't duke it out in some corner of the hospital to come to a consensus and not put you in the middle.  Yes...some people do make it through without a tube....on the other hand I would venture to say that most patients end up getting a tube somewhere down the line.  It is important to keep swallowing, as the swallow muscles will forget how to do their job.  However, trying to swallow everything is difficult at best....and for some....almost impossible.  I got the tube before I started treatment....I did not use it once during radiation....but after rads, there was no way I could put anything in my mouth but a little water for 2 months (I dutifully swallowed something everyday, but no way would I have been able to keep up nutrition or hydration via my mouth during the two months following the end of rads).  I was SO glad the tube was already in place waiting to be used.  I did not have any extra weight to lose....and even with a tube lost 18 or 19 lbs.

    It's minor surgery....takes about 45 minutes from the time they take you in and bring you out....

    p

  • donfoo
    donfoo Member Posts: 1,771 Member
    Good luck Bud

    Wish you the best as you start chemo-radiation therapy. PEG is a highly controversial topic, even as you personally experience two doctors with different opinions. I'm on the side to wait until you can no longer swallow no matter what. The rationale is the longer you swallow the greater chance you will have better swallow afterwards. I have no idea if that proves out but I felt empowered to know did the most to save my swallow capability and have less chance of stricture and other problems.

    Ask what sorts of issues many have with the PEG. This is often glossed over but there are many reports of various difficulties arising from the PEG. And ask just how long a break one must endure if a PEG is needed mid treatment. As I said this is a sensitive topic. Whichever way you go, it is not going to have any long term impact about killing the cancer or keeping it away. Good luck. Don

     

     

     

     

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    welcome

    Bud,

    Welcome to the H&N forum, so sorry you are here.

    PEG or no PEG, you might as well flip a coin.  For me, I had two, the first was the PEG from hell,  the second a delight.  BUT in hindsight I could have made it without one as I always drank one meal a day (easily).

    You have to be determined to get your nutrition every day, either by mouth or PEG.  Some people have so much trouble eating and drinking, they are left with no choice but to PEG.  Others do manage to eat and drink.  It is hard to predict where you will land.

    When a Peg works good, life is a breeze.  When it doesn’t life gets complicated, especially if you are dependant.

    Because of this forum and the class of Dec/Jan 2011/2012, I started drinking lots of water and haven’t stopped.  Best advice I got…drink and swallow!

    At almost 3 years post treatment, life is good in my “New Normal”

    I wish you a smooth ride. 

    Matt

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N Group

    I want to welcome you to the group and say sorry you need to be here. I can't offer any advice. I only had surgery and no chemo or radaition. Mine was just above my larnyx so the took my larnyx and 86 glands. T3;N0;M0. You will hear from many that did and did not have a PEG.  It seams from what I have read it better to get it first and you might not need it, but if you do it is there. My hospital had a tumor board so all the doctors get together and deside. But only one is the head Dr. so you don't have to chose which one, the doctors all deside and come to you with what is the best way for you to go.

    Bill

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    Feeding Tube

    When my husband was first diagnosed with laryngeal cancer, right at the start the ENT, oncologist and radiogolist all said feeding tube because it was much easier to insert before radiation has done any damage and oh so easy to remove.  We were also told that head and neck radiation was the worse. Thankfully he had the feeding tube because the radiation did a lot of damage to the back of his throat.  Now the second time he underwent radiation they weren't going to insert a feeding tube (different oncologist) but after hearing all the problems with the first round, the head and neck specialist saying he needs a feeding tube and how much weight my husband had lost, they went ahead and inserted a feeding tube.  Yes he needed it once again and in fact he still has it.

    Just remember every one is different in how their bodies respond to treatment.  Everyone has their own opinion as far as a feeding tube, but like I said previously we were told easy to insert before radiation starts and easy to remove if not needed.  He didn't use it at first and became very dehydrated due to the chemo and had many days of fluids.   He also had a therapist that worked with him on swallowing but it didn't help due to the radiation damage that no one knew about until he had surgery.

    Wishing you peace and comfort -- Sharon

  • BudStamm
    BudStamm Member Posts: 19
    Thank You...Thank each and everyone of you...

    It is so wonderful to open this this morning and find the reponses that I did! So much info from so many wonderful encouraging people. Its encouraging to find views from both sides of the arguement as to having a tube put in before or wait until I absolutely need it and perhaps to not need it at all.

    I am still split down the middle but leaning more to going ahead and having it inserted with the hope I wont needed....sort of better to have it and not need it then to need it and risk possibly having to be admitted because of dehydration or malnutrition.

    One of the things I read on many of the post in this group is the need to continue to swallow...drinking water if nothing else. I had not idea that you could possibly lose the ability to swallow and have to learn to swallow all over again....thanks so much for the warning!!

    Thank each and everyone of you for your posts and replies...they help more then you can ever know as for us "rookies" it is one of the best places we can learn as often you cant remember or think of things you need to ask your doctor and sure enough you run across a post about the very things you want to know.....thanks so much!

     

    Bud

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    BudStamm said:

    Thank You...Thank each and everyone of you...

    It is so wonderful to open this this morning and find the reponses that I did! So much info from so many wonderful encouraging people. Its encouraging to find views from both sides of the arguement as to having a tube put in before or wait until I absolutely need it and perhaps to not need it at all.

    I am still split down the middle but leaning more to going ahead and having it inserted with the hope I wont needed....sort of better to have it and not need it then to need it and risk possibly having to be admitted because of dehydration or malnutrition.

    One of the things I read on many of the post in this group is the need to continue to swallow...drinking water if nothing else. I had not idea that you could possibly lose the ability to swallow and have to learn to swallow all over again....thanks so much for the warning!!

    Thank each and everyone of you for your posts and replies...they help more then you can ever know as for us "rookies" it is one of the best places we can learn as often you cant remember or think of things you need to ask your doctor and sure enough you run across a post about the very things you want to know.....thanks so much!

     

    Bud

    Swallowing...

    It's very important to keep exercising those swallow muscles... 

    I was another that didn't have a PEG.. Always was an option if needed, but I never did...

     

    BTW, I too was STGIII SCC Right Tonsil and a lymphnode, HPV+.. Only hte tonsils were removed, the lymphnode actually dissolved away during the first two cycles of chemo.

    I had three cycles, each being three weeks long. Cisplatin, Taxotere and 5FU. The first two on Monday, the 5FU in a pump four the next few days, coming off Friday.

    After those nine weeks, and additional seven weeks of Carboplatin on Monday, and rads every day for 35 days - Monday through Friday.

    Thats was January 2009..., clean and clear since...

    John

  • MrsBD
    MrsBD Member Posts: 615 Member
    No PEG

    I did not have a PEG and lost 40 lbs. I drank water and ate soup or soft foods. After finishing treatment, I needed supplemental fluids six times, but kept on top of things and never had to be hospitalized for dehydration. The cancer team was always encouraging me to eat and drink and so was my husband. Having all of them nagging me was a good thing! I'm at five months after treatment and feeling very blessed to be almost the old me, just a tired, skinny version. Oh, and cancer free! By the way, my oncologist suggested acupuncture. I do believe it eased the side effects and helped me avoid a tube.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    hi bud, the tube has been

    hi bud, the tube has been used by many but there are many others who did not need it or had it and did not use it.  it is hard to say as we all react differently to tx.  i had a feed tube and i still lost mass weight but i definitely needed it to keep my nutrition up and keep me from becoming dehydrated.  i just want to welcome you to the family and wish you the best as you take this jounery nobody signs up for.  i will be praying for tx to go well w/o too many bumps in the road.  let us know if you have any other questions.

    God bless you,

    dj

  • lornal
    lornal Member Posts: 428
    tube

    I didn't have the PEG during my first cancer in 2007.  I was dehydrated and towards the end of treatment and a month after, I was going in almost daily for fluids (I didn't have a port either - IVs every day)

    I had another cancer in 2014, and had symptoms for over a year before it was diagnosed.  I had swallowing difficulty and did get dehydrated.  I was always in pain - especially a sore throat and was taking pain killers that really didn't work.  I ended up with a tube.  Once I had the feeding tube, I was no longer dehydrated and didn't hurt so bad - I was able to get off the pain killers.

    Hydration is so important.  Either way you go, you must stay hydrated.  Start drinking water now.

    Lorna 2007 & 2014

  • SASH
    SASH Member Posts: 421 Member
    My take on the tube

    I didn't have the tube, but in hindsight, I should have.  It is always better to have it and not use it when you don't need it, but then you will have it for the days that you really need it.  Even if you have the tube, that doesn't mean you can't try by mouth and I personally would recommend trying to swallow as much by mouth for as long as possible.  Without the tube, I lost 95 pounds through treatment.  I had to have the tube put in for my surgery and used it solely for nutrition and fluids for about 3 1/2 weeks after and then gradually started getting in nutrition by mouth.  I weened myself off the tube and after a couple of months, I was getting all nutrition by mouth once again.

    Obviously it can only be your choice if you want the tube or not, but there might be days when you are just too tired, too sore, or just not up to it, to get your nutrition by mouth and you can always fall back on the tube if you have it.

  • hawk711
    hawk711 Member Posts: 566
    SASH said:

    My take on the tube

    I didn't have the tube, but in hindsight, I should have.  It is always better to have it and not use it when you don't need it, but then you will have it for the days that you really need it.  Even if you have the tube, that doesn't mean you can't try by mouth and I personally would recommend trying to swallow as much by mouth for as long as possible.  Without the tube, I lost 95 pounds through treatment.  I had to have the tube put in for my surgery and used it solely for nutrition and fluids for about 3 1/2 weeks after and then gradually started getting in nutrition by mouth.  I weened myself off the tube and after a couple of months, I was getting all nutrition by mouth once again.

    Obviously it can only be your choice if you want the tube or not, but there might be days when you are just too tired, too sore, or just not up to it, to get your nutrition by mouth and you can always fall back on the tube if you have it.

    To Tube or not to Tube

    I had the tube put in before all the fun started and I'm glad I did.  I didn't use it for 3 weeks, then I used it for 6 months!  You don't really forget how to swallow, it's the pain, sores, and thick mucous that prohibits swallowing.  At least it was for me.   It's an easy surgery, but it still hurt for 24 hours, and when you are hurting from RADS, it's hard to say, "let's go get more things to hurt me".   Anyway, making some light of this because you have to be positive and keep your sense of humor...If you don't use the PEG, just let it hang there till you want it out.  

    My recommendation is get the tube.  It is insurance for you.  Good Luck in the process, it works, but it is not easy.

    Best,  Steve

     

     

     

     

  • jackflash22
    jackflash22 Member Posts: 524 Member
    Peg tube

    just been reading all the for and against so I thought I'd throw my tuppence in...I had a feeding tube before rads and was grateful for it. I didn't need it at first but gradually during rads my throat closed with scar tissue and I couldn't eat for 18 months and lived on formulas. After about 15 months I got intolerant to the formulas but docs wouldn't let me go on real foods because of blocking the tube and not getting the correct amount of calories which is a load of rubbish. I wonder how many of these docs have had H and Neck cancer and lived off of formulas and experienced first hand what side effects rads cause. ( not really serious, but they have so many opinions). I've now been lucky to have had my throat opened and after three dilations can swallow water, thin soup etc. still have seven dilation to go. The last one opened my stricture to 12 mm. I haven't swallowed for 18 months not even saliva but as soon as I tried,my swallow was there no problem. I thought I may have had to think my swallowing muscles through but it just came naturally. So don't think getting a tube is going to take your swallow away. Maybe some on here did lose their swallow, this is just my experience.