Create a PEGless club profile?

treatment started in last April.  I never used it, not even one time during radiation...had no interest in using it, and frankly...the damn thing gave me the creeps.  When I had my Onc appointment the week after radiation was over, I asked that it be removed thinking that with rads over, I'd not need it.  The Dr. said "no, lets wait a bit". 

Within 48 hours of my first 5FU treatment, my mouth was blistered and bleeding...so painful that even breathing hurt and that lasted 2 1/2 weeks giving me 3 or 4 days before the next treatment to drink my water and Ensure.  There was nothing that was going into my mouth.  I have a high pain tolerance, but even plain water was agony. 

Would I have survived without my tube?  Possibly, but at 81 lbs, I think my survival would have called for being kept in the hospital 2 1/2 weeks out of every 3, for 3 months so I could get needed hydration and nutritian. 

As far as I can see, there are only two aspects of "avoiding" the PEG tube.  Pain levels and pain tolerance....both too subjective to assess on a spread sheet.

p 

It was an emotional victory for me avoiding the PEG through treatment (barely) but I ended up getting one due to eating and swallowing issues that caused significant weight loss. 

My team was for not getting one initially as the Nuerontin therapy I was on was proven to lessen mouth and throat pain. Unfortunately, I went into treatment with mouth and throat pain from the surgeries so it never had a chance against the "set in" pain.  By the end, I could barely swallow sips of water. While it's a little weird, I'm glad I have it as it's made my recovery easier. Besides, I can talk while I eat without being impolite ~ 

"T"

donfoo said:

no PEG - Here is why

Rather than set a new fire on another peg/nopeg flame post, I am going to list all the things that I believe influenced my ability to avoid needing a PEG. I have no interest or energy to spin wasted cycles and get folks all wound up. Each person can read this as they weigh their own decision process around PEG.

Take it for what is is worth but I strongly believe and am convinced that a number of the following factors allowed me to avoid a PEG. Some of these were dealt cards so nothing to influence;  others, I could influence and they changed the outcome.

Primary tumor clearly identified. Having the primary tumor mapped by the RO and dossimetrist sure seems to make the radiation targeting and countouring to be more precise instead of having to radiate for a field where primary is not identified. I am sure the radiation field is mapped to a larger and greater intensity with unknown primaries; that is what just makes logical sense; I could be way off.

Induction TPF chemo therapy done before concurrent chemoradiation therapy. Induction TPF is one the strongest therapies to skrink/dissolve existing tumors, both primary and regional nodes and kill small cancer cells that got loose from the main tumor areas.

Induction TPF delivered complete or near complete resolution to the primary and regional node cancers, according to recent scans. Doing early TPF enabled maximum reduction in cancer size to be treated by concurrent chemo-radiation. Less radiation, more precise mapping, less side effects.

Induction TPF chemo dosing allowed for minimal chemo to be delivered during the concurrent chemo-radiation treatment; thus, minimizing chemo related side effects during the chemo-radiation therapy. I received 7 weekly carboplatin 150 doses for the radiosynthesizer effect only, chemo was not adminstered for treating cancer cells. I did not have ANY side effects from the carbo 150.

Having the smallest radiation dossimetrty map seems to me to go along with fewest side effects of the radiation in general.

I could always alleviate the pain such that I was always able to drink fluids and protein shakes. I still have not heard a single cogent logic argument stating if one can consume protein shakes and water orally, why are you still forced onto a PEG. My math tells me you can get sufficient fluild and nutrition to sqweak by with no need for the PEG.

My Surgeon ENT, MO and RO all sided with me to defer any PEG decision until later. The RO actually threw out a number like 1 in 3 I would need a PEG based on his experience and the specifics of my case. Collectively, they saw something that gave them a decent feeling that I was going to not need a PEG.

I made it through treatment (Chemo followed by radiation) at MDA for NPC totally tube-free. It wasn't easy -  I lost a a lot of weight but recovered and gained back most of of that weight.  I was able to eat just about everything after a year or so with a good bottle of water to wash it down with and a little extra time.  I was eating so well I had to be carefully I didn't gain too much.  

Fast forward 12 years.  I started having trouble swallowing. Radiation fibrosis/late effects/nerve damage.  It finally got so bad that I could not eat or drink enough to maintain my weight or stay hydrated.  So I ended up getting a tube.  I miss being able to eat but I love my mickey button.  It save my life.

don,

You lit the fire, so enjoy it (this is an open forum).

You try to take something as personal and complicated as cancer and subsequent cancer treatments and cancer side effects and break it down to something you can direct.  Not everyone will be as fortunate as you are with limited side effects (no matter whatever they do or don’t do).  The final outcome is what it is, no more no less.  The only true way to validate your procedure would be to do it again and let the doctors set your plan without modifying input from you.  Of course that is silly.

The whole controversy on PEG or no PEG can be complicated. By the time you determine a PEG is needed, you need things to go right and often they don’t.

See you around the water cooler,

2-PEG Matt

I can honestly say that without my husband's PEG tube he wouldn't be here today.  He had radiation and chemo first and it was very tough on him.  His was laryngeal cancer, lst primary.  Radiation completely closed off the back of his throat and if he hadn't of had the PEG tube inserted before treatment started they wouldn't have been able to insert a PEG tube later on.  He had a speech therapist that came to the house 3x weekly to work with him on swallowing, but like us she didn't know the back of his throat was closed off from the radiation.  We didn't find out until they did a laryngectomy.

Now fast forward to when he was diagnosed with a second primary at the cervical of his esophagus.  This oncologist (not the same oncologist as his first treatment since he was now being treated at Emory Winship Cancer Center) said no feeding tube before treatment started but then he changed his mind when he kept looking at my husband and his weighed 6'4" -- 145 and decided to insert a PEG tube again.  The H&N specialist said he wanted a feeding tube inserted.  Once again radiation did its damage to his throat but thankfully the specialist was able to open it without any surgery or problems.  He has had a PEG tube since May of 2012 and will be on it until his time is over on his earth.  Esophagus is too narrow.  

I think a feeding tube depends on the person and his care team.  Everyone is different in how they respond to radiation and chemo and even surgery.  For all those that can do it without a feeding tube that is great but too many need the feeding tube.

Sharon

See how this question has started getting too personal.  Mind over matter -- sorry but that doesn't get it.  My husband was told that if he didn't need the feeding tube it could be removed.  It was a just in case when it was insert.  Therefore when he needed it, it wasn't a mind over matter subject.  It was the desire to stay alive and complete his treatment.  He doesn't ever complain about pain and doesn't take the pain medicine as he should.  He would rather suffer but the feeding tube is what has kept him alive.  

We were told going in the first time that head and neck radiation was the worse there is.  Everyone is different and just because someone needs a feeding tube doesn't make them any worse or better than someone who can get thru treatment without one.  

I got my tube practively 3 weeks into my treatment 2 days before my second Chemo treatment (not the best day) detriment ot planning on using, but triathletes I knew nutrition is the most important part of a race.  I was determined to not use it, but I made a deal with my wife and Dr, that if I could not eat/drink 3000 cal a day I would use the tube supplement. 

I stuck to this deal and was forced to use the tube since getting 3000 was difficult via mouth.  However, I look at it as a good thing, since I only lost 15lbs (185 to 170) had lots of energy and good stamina through the process. 

The only frustrating thing about the tube has been now, post treatment I am holding myself to the same deal, and so the tube is still with me longer than I expected.  I am drinking and eating puréed, but I can not get 3000 cals so I still need to supplement.

i agree with Don, that lost of people could get through this without a tube, but should you. that is a personsl choice you need to make with your family and Dr. However I think you would be hard pressed to find a Dr that say it is a better idea to not get it.

Eric

Skiffin16 said:

My Feelings...

Did you fully read my comments....obviously I think you took me the wrong way or the intent of my post before fully understanding what I was trying to say. I in no way tried to discredit or take away anyone's choice for having or needing a PEG, quite the opposite.

My point was not to imply that I willed myself to get through without..., quite the opposite. I was merely stating traits that I have... I have no idea why I got through without compared to another that didn't or couldn't.

I personally don't really have any opinion or concern about the PEG, other than stated...not mandatory.

Having a PEG was/is NOT a sign of weakness in any way. It's just a part of treatment that may or may not be prescribed.

I have always endorsed the PEG especially if prescribed, and even in a few cases that it wasn't but obvious scenarios probably dictated a much more benefit than not having a PEG...

The only thing that I have ever stated was that it shouldn't be mandatory.

If I were prescribed, or got to a point in treatment that dictated that I would be better off or benefit from the PEG, I would have gotten one no questions asked... I had/have full faith and believe in my MD's and the decisions they have made for my health and welfare.

Now you can see why I stated upfront that this has always been a highly sensitve subject.... It always leads to bad feelings because each of us bring something different to the table.

Don I believe is trying to approach it on a logical and pracitcal point of view or observation, and for many it's not... It's a very personal subject and hits home to many when you come across as you are weak because you needed a PEG, and I'm not because I didn't... None of that is true.... It has nothing to do with being weak or strong, it has everything to do with how each person responds to the disease and treatment, and what is needed to get you through...period.

John

PEGs or not PEGs

Drink water, keep swallowing, take anti-nausea or pain meds……………

If I was to design an approach to going PEGless I would choose a path which I believe helps and is truly sincere. It is easy to sell people on drinking lots of water, it just makes sense, and you can hardly go wrong.  Now a PEG is a different animal, it is foreign, intrusive, yet live saving and has to follow another path from inception to mental and physical acceptance.

You would be wrong to say follow steps 1, 2, 3 and you won’t need a PEG, but you wouldn’t be incorrect to give some recommendations on what worked for you. It is nice that Don has stuck his neck out to provide some good information, but it is not his neck which matters, it is yours.

Looking back we all may have 20/20 vision on how we may have done some things differently, but there are those who did everything correct with less happy results. We call it a game or a battle, but even on best days it is sometimes no better than the luck of the draw.

Side note: I had 2 PEGs, one terrible the other great.  Looking back, I could have gone PEGless (go figure), but I followed the same “best recommendations” which had me drinking lots of water. I bet on a sure thing.

Peace,

Matt

This is an emotional subject for some. There truly is no one answer that can cover the diversity of diagnosis, treatment nor ones reaction that can be catagorized as difinitive.

One cannot infer inflection nor tone with a post on a thread. We can try using bold, italics or underlining but the message may still be misconstrued. A choice of one word or another can change a meaning and/or infer something other than the original intent. A persons own personal state of mind when they read a post can influence their perception.

I suggest a deep breath and take it for what they are... Words on a screen.

"T"

CivilMatt said:

HI ‘T’

What are you trying to say ???

Matt

you've got me laughin'....

p