need some help....

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!!

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.

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 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.

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

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

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 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

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

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

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.

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.