Create a PEGless club profile?

donfoo
donfoo Member Posts: 1,771 Member

Not sure when to declare myself officially PEGless but I feel good enough and far enough along to step out there and say I won't be getting one. PEG is such an emotional topic and not many elect or will themselves through treatment without a PEG, but many would probably be interested in seeing a common profile for those who are able to go without.

During the next week or so, I have some time to coordinate a data collection exercise to draft a set of questions and record answers to identify certain trends or characteristics that may be reliable indicators for those who may be able to avoid a PEG.

Are there enough of us here to even make collecting sufficient data a meaningful exercise? Is there enough interest amonst the community to want to have this sort of information. At a minimum I can jot down my profile, I bet JG would be willing to throw his info together, how many others are active here and avoided the PEG?

 

Thanks

Don

«13

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    PEGless in Florida

    As you are aware, I didn't have a PEG..., didn't avoid one, just wasn't pescribed one, and it worked out fine.

    I was aware that it was always an option if things went south though.

    And as you are also aware, or not.... The PEG has always been a source of controversy, especially with me..., and Kent back in the day, LOL.

    At one time the mindset and it was even mentioned that the PEG should be mandatory..., that really got me fired up.

    I'm not against the PEG, but also, I'm not going to endorse something as mandatory when I for one, know it's not.

    Are there cases where it definitely should be required..., absolutely. But that's not for me to say, nor anyone else here... That's a MD call on a case by case scenario.

    Do some people say they wouldn\t have survived without a PEG..., yes. Would some of those have survived without a PEG..., yes.

    But, if they were prescribed, and it helps them either mentally or physically..., then it's a good thing.

    If my MD's would have prescribed one, I would have had one...

    Anywayzzzzz.....

    Sure, I'll participate....but I'd rather it not turn into something that is an us and them thing... I'm no different than anyone else here, we all went through similar, some more than others...

    Who really knows why some have minimal side effects, and some have many... Look at me at 6' and 250#, and Phrannie, whom is the size of my right leg, LOL... I don't see where she had it significantly rougher than I...

    Then look at Arn..., he looks similar in size to me and had everything thinkable hit him.

    JG  

  • phrannie51
    phrannie51 Member Posts: 4,716
    As you know I got my PEG before

    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.

  • D Lewis
    D Lewis Member Posts: 1,581 Member

    As you know I got my PEG before

    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.

    Subjective

    I'm with Phrannie on this one.  It is simply too subjective to derive meaningful criteria.

    My doctors told me up front that I wouldn't need a PEG tube. But, I received a full dose of radiation to both sides. By my third week, I was spending upwards of an hour slowly swallowing a cup of broth, and broth has NO nutrition at all. I was the one who hollered 'uncle' and demanded they put the thing in.  I could tell I was headed straight for dehydration and malnutrition and that was no way to get through a successful treatment.

    Deb

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Everyone is different

    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
    donfoo Member Posts: 1,771 Member
    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.

  • amr2662
    amr2662 Member Posts: 45 Member
    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.

    It ain't over til it's over

    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.

     

  • hwt
    hwt Member Posts: 2,328 Member
    amr2662 said:

    It ain't over til it's over

    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.

     

    G tube

    I had a g-tube but I think you have a good idea going that might help someone else.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    No PEGgers allowed

     

    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

     

  • donfoo
    donfoo Member Posts: 1,771 Member
    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.

    another factor or two

    One other factor that likely had some impact on the lessened side effects of radiation was the dossimetrist's map shows a pretty strong dosing on the right side of the neck and throat. The statement was made several times that no tumor mass crossed the midline and I saw the left side map showing a consistent 5300 gray dose on that side. I did also mention to the RO that it seems they could map around the parotid on the left side and maybe that is why I still have decent saliva production and not much dry mouth. Again, avoiding these side effects make it easier to avoid having a PEG.

    Keeping the higher radiation dosing to the right side of the throat also created a clearer path for passing food and liquid down the left side of the throat. I definately see less ulcerations on the left side of the back of throat as well as less inflamation running down the left side of the tongue and cheek. It just makes sense again that what I see is directly related to receiving less rads in the leftside area of the mouth, tongue, and neck.

    Same thing with radiation burns. I have a couple places where the maximum radiation burning shows on the right side of my neck. There is very little exposed burning along the left side of the neck and again, likely related to the fact more radiation is thrown onto the right side of the neck.

    The overall lessened side effects of these factors seemingly reduces the need for a PEG.

     

    EDIT - One more factor  - new IMRT machine and Eclipse comprehensive treatment planning system

    The IMRT machine I was treated on is the latest generation Trilogy by Varian http://www.varian.com/us/oncology/radiation_oncology/trilogy/#.UawhnJxxrHk

    It does all the radiation delivery in two 60 second sweeps, continuous and no discernable clicking or stopping or stepping. I think this may also help with radiation delivery as it allows for more even contouring and smooth application of radiation across all the zones. Also since it does its job so quickly it may also be delivering radiation in a more precise and controlled manner than older IRMT devices.

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    Peg Tube

    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

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    IMRT - TPF - Concurrent

    Don, I had the same protocul as you... But I have no idea why some are affected differently than others..., other than the old standby, "We are all different"...

    I do have a high degree for pain tolerance, I was in the Marines for several years, which stress discipline and control of your body and senses..., I have always been a believer of mind of matter.... But I also know that if the body hurts enough, your gonna do what it takes to get through.

    So in reality even if a few of those that probably could get through without a PEG opt to get one. If they don't have confidense, or their attitude is displaced because of their pain. It probably was a better choice to get a PEG to get through treatment..., sort of like a placebo effect.

    I have no problem with someone getting the PEG, or not... I am a firm supporter of do what you have to do to get through and survive.

    It becomes a sensitive subject when you or I come across as having some special ability or mindset that allowed us to not have the PEG and get through with minimal damage. Where others are weak minded or couldn't handle it or tough it out...

    I'm just not a firm believer the PEG should be mandatory to get through treatment..., you, myself and others have proved that's not the case.

    JG

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    JG

    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.  

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

    JG

    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.  

    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

  • Moayediberg
    Moayediberg Member Posts: 4
    It is not if you can it is if you should go peg less

    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
    Skiffin16 Member Posts: 8,305 Member

    It is not if you can it is if you should go peg less

    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

    Should....?

    Welcome Eric....

    Should according to who..., you or my MD...?

    Again, all of that was your choice and decision..., not mandatory...

    Your comment, "However I think you would be hard pressed to find a Dr that say it is a better idea to not get it."... Obviously for myself my MD's did in essence say "Not to get it", by not prescribing it. If you have followed my postings on the subject over the last four years.... you would know that I haave always said, "if I were prescribed one, I would have gotten one...no questions asked". And that would have not meant that I am weak.... None of us that go through this are weak.

    We are talking different scenarios here I think... Making a decision to avoid the PEG, or deny the PEG when prescribed, versus not being prescribed one and saying the MD is wrong in so doing...

    John

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    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

    up to my PEG self

    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

  • katenorwood
    katenorwood Member Posts: 1,912
    Hello Don !

    Wow !

    I found your post very informative myself.  But also everybody elses comments were very informative also !  I think that the pro's and con's should be talked about without any she said he said.   Every BODY is different and unique, but without information to see what it's all about, with viable opinions and options we tend to get clumped together.  (one tx standard for all)  I want to thank you for reaching out and starting to think outside the box so to speak.  This is the only way things move forward.  Please remember everyone, this site is to share information, and ideas.  Emotions run high, and no one should feel slighted.  Hugs sent out to all !   Katie 

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Words on a screen

    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
    CivilMatt Member Posts: 4,722 Member
    fishmanpa said:

    Words on a screen

    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"

    HI ‘T’

    What are you trying to say ???

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
    CivilMatt said:

    HI ‘T’

    What are you trying to say ???

    Matt

    As per usual, Matt.....

    you've got me laughin'....

    p