Create a PEGless club profile?

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Comments

  • Duggie88
    Duggie88 Member Posts: 760 Member
    Skiffin16 said:

    IC UR 1 2

    I see you are one two....

    ABI-Normal..., LOL.

    JG

    YEP

    Some peoples be abi-normal and try to hide it...........nots me I be proud of it. My wife tells me I prove it everyday. I thinks being a survivor made me just a wee bit more abi.

  • donfoo
    donfoo Member Posts: 1,771 Member
    OK friends?

    Hi,

    I know I really stirred the pot on this one but wanted to follow up on this objectively. I think the idea of some form of info/fact  sheet covering the topif PEGT has merits and solicit your input to review ny early draft and get your thoughts on the content, organization, missing parts, excessive parts, color of ink, whatever.

    My goal is to hopefully have gather all the comments by the end of the week and I would reroll it all into a real draft this weekend. I just can't commit to a drawn out effort as I just sure how much personal time I will have for CSN down the road and would like my contribution to be done before I go.

    Thanks in advance,

    don

     

    Posting response in the clear is good. please do it here or the other related post.

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    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.

     

    Amr2662 
    me too same length

    Amr2662 

    me too same length of time. did you do therapy, have you regained anything?  I had tube during cancer not my choice they put it in during exploritory surgery And my second one this past Christmas .  I didnt get a mickey button i got long tube with annoying disk, please tell me your story and lll share mine, maybe we can help each other?

     

    Rachel

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    Ladylacy said:

    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

    Sharon, 
    how did they open

    Sharon, 

    how did they open back of throat, i have scar tissue build up that closes my throat right aftrr i swallow and nakes it hard to move food down.  Evdn very soft food. Would appreciate anything you could offer!

    thAnks,

    Rachel

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    donfoo said:

    OK friends?

    Hi,

    I know I really stirred the pot on this one but wanted to follow up on this objectively. I think the idea of some form of info/fact  sheet covering the topif PEGT has merits and solicit your input to review ny early draft and get your thoughts on the content, organization, missing parts, excessive parts, color of ink, whatever.

    My goal is to hopefully have gather all the comments by the end of the week and I would reroll it all into a real draft this weekend. I just can't commit to a drawn out effort as I just sure how much personal time I will have for CSN down the road and would like my contribution to be done before I go.

    Thanks in advance,

    don

     

    Posting response in the clear is good. please do it here or the other related post.

    Peg Tube Guideline

    Sorry but I don't agree with one.  A PEG tube should be between the patient and their doctors only, not some guideline that non-professionals put out.  Too many people rely exactly on what they read on these boards.  Some of the responses on this make it seem like you can get along without one and if you don't well you for a better word aren't trying.  You know the different H&N cancers have radiation in different places.

    We were told going on that because my husband was so underweight he needed a PEG tube before treatment started for laryngeal cancer.  If we waited there could be major problems for inserting one and if he didn't need it, it could easily be removed.  You talk about infections, well I guess he was lucky because he never had a problem with infections.  He kept it very clean.  There are too many different types of H&N cancer to say one person shouldn't get a feeding tube.  The first time, we were very lucky to have it inserted before radiation started because the radiation completely closed off the back of his throat, which if he hadn't had it inserted at the beginning, they wouldn't have been able to insert a PEG tube. 

    Second time around for cancer at the cervical of his esophagus (right below where he was treated the first time), they inserted the tube again before treatment due to his weight and previous problems with the radiation.  Yes he still has it after one year and will have it until the end due to the fact that his swallowing is very poor. 

    My personal feelings is that this topic is better left to the patient and their doctors as to whether or not they need the tube.  Easy to insert and easy to remove.  And as long as you follow the directions they give you, you should be okay with one.  Yes they can get infected but so can a minor cut.

    And for all those that got thru treatment without needing one, I think that is great.  There is nothing better that I would love to see is my husband eating again even if it was just mashed potatoes.  That is nothing better I would love to see is my husband not ever having to go thru what he has gone thru for the last 3 years and to know that he isn't terminal due to this beast.

    Sharon

  • jcortney
    jcortney Member Posts: 503
    Ladylacy said:

    Peg Tube Guideline

    Sorry but I don't agree with one.  A PEG tube should be between the patient and their doctors only, not some guideline that non-professionals put out.  Too many people rely exactly on what they read on these boards.  Some of the responses on this make it seem like you can get along without one and if you don't well you for a better word aren't trying.  You know the different H&N cancers have radiation in different places.

    We were told going on that because my husband was so underweight he needed a PEG tube before treatment started for laryngeal cancer.  If we waited there could be major problems for inserting one and if he didn't need it, it could easily be removed.  You talk about infections, well I guess he was lucky because he never had a problem with infections.  He kept it very clean.  There are too many different types of H&N cancer to say one person shouldn't get a feeding tube.  The first time, we were very lucky to have it inserted before radiation started because the radiation completely closed off the back of his throat, which if he hadn't had it inserted at the beginning, they wouldn't have been able to insert a PEG tube. 

    Second time around for cancer at the cervical of his esophagus (right below where he was treated the first time), they inserted the tube again before treatment due to his weight and previous problems with the radiation.  Yes he still has it after one year and will have it until the end due to the fact that his swallowing is very poor. 

    My personal feelings is that this topic is better left to the patient and their doctors as to whether or not they need the tube.  Easy to insert and easy to remove.  And as long as you follow the directions they give you, you should be okay with one.  Yes they can get infected but so can a minor cut.

    And for all those that got thru treatment without needing one, I think that is great.  There is nothing better that I would love to see is my husband eating again even if it was just mashed potatoes.  That is nothing better I would love to see is my husband not ever having to go thru what he has gone thru for the last 3 years and to know that he isn't terminal due to this beast.

    Sharon

    Sorry Don

    Man, I've spend days deciding should I weigh in on this one.  I've wrote three different responses but each time decided not to post.  But I think that Sharon's post, which I completely agree with, has spurred me on.  

    I think that you were/are trying to be helpful but if you objectively read your posts and your document it has the feel/tone that PEG tubes are to be avoided or are dangerous or, not brave.  Facts are that there are incredibly few complications (as a percentage) that are directly related to this procedure (all surgery has risks) and a high pain threshold should not necessarily be a deciding consideration if a tube is or is not used.  Most people are by nature will do anything to avoid surgery.  I know I fought getting a G-Tube tooth and nail.  If I read these posts and the new document as it is written, I might have fought harder and the facts DO bear out that PEG's inserted late in treatement are harder on the patient than when instered as a prophalactic early on.

    I think if you did a survey of the folks on this board, past and present, you would find that the overwhelming percentage had some kind of feeding assistance.  Not utilizing a tube is a really great idea, especially from a swallow perspective and I applaud those who are able, because of their constitution, favorable reaction to therapy or other intangibles are able to make it all the way through the journey without their use.  I have also read many posts from folks that have had tubes inserted and were able to never utilize them.  No harm, no foul.  But, the numbers clearly point out that this is not the norm or even possible for most forms of our disease.  One example would be disease that has an undiscovered primary and/or a disease that encompasses both sides of the neck require more radiation and therefore will probably produce more adverse effects late in treatment that, more often than most, will cause swallowing anything other than water almost impossible.  This is obviously just one example of a plethora of cases where a feeding appliance is warranted and necessary.

    A lay document that discusses this subject cannot possibly not take on the bias/conclusions of the author and, from only my personal opinion, can confuse a patient at a very emotional point and cause conflict; which was exactly what you were trying to avoid.

    So, it was a good idea that probably is impossible to accomplish.

    Just my 2¢

    Joe

     

  • Ladylacy
    Ladylacy Member Posts: 773 Member

    Sharon, 
    how did they open

    Sharon, 

    how did they open back of throat, i have scar tissue build up that closes my throat right aftrr i swallow and nakes it hard to move food down.  Evdn very soft food. Would appreciate anything you could offer!

    thAnks,

    Rachel

    Rachel

    When the first radiation closed off the back of my husband's throat, we didn't know until they did a largynectomy in March of 2011.  Until then we had a speech therapist working with him to swallow, which was impossible.  When the H&N specialist did the surgery, they came out to tell me that would have to reconstruct his throat and I had to sign the papers.  After that he was able to swallow and eat foods and the PEG tube was removed 6 weeks after surgery.  Then one year later they found a tumor at the cervical of his esophagus.  Another PEG tube was inserted because they were going to do another 35 radiation treatments in almost the exact same spot as the first.  It did close off his throat but this time the specialist was able to open it by dilation.  It didn't last so we were right back where we were.  Now since the cancer has reoccurred and spread the feeding tube is the only way he can get his nutrition.  He can swallow liquids but his mucus in his throat is so bad it is very hard and the throat has shrunk once again.  He tries very hard but just isn't able to swallow foods.  Also his esophagus is very narrow due to all the radiation and this makes swallowing even harder.  The specialist did talk about botox injections but with the spread and reoccurrence, it isn't worth it.

    Sharon

  • donfoo
    donfoo Member Posts: 1,771 Member
    Ladylacy said:

    Peg Tube Guideline

    Sorry but I don't agree with one.  A PEG tube should be between the patient and their doctors only, not some guideline that non-professionals put out.  Too many people rely exactly on what they read on these boards.  Some of the responses on this make it seem like you can get along without one and if you don't well you for a better word aren't trying.  You know the different H&N cancers have radiation in different places.

    We were told going on that because my husband was so underweight he needed a PEG tube before treatment started for laryngeal cancer.  If we waited there could be major problems for inserting one and if he didn't need it, it could easily be removed.  You talk about infections, well I guess he was lucky because he never had a problem with infections.  He kept it very clean.  There are too many different types of H&N cancer to say one person shouldn't get a feeding tube.  The first time, we were very lucky to have it inserted before radiation started because the radiation completely closed off the back of his throat, which if he hadn't had it inserted at the beginning, they wouldn't have been able to insert a PEG tube. 

    Second time around for cancer at the cervical of his esophagus (right below where he was treated the first time), they inserted the tube again before treatment due to his weight and previous problems with the radiation.  Yes he still has it after one year and will have it until the end due to the fact that his swallowing is very poor. 

    My personal feelings is that this topic is better left to the patient and their doctors as to whether or not they need the tube.  Easy to insert and easy to remove.  And as long as you follow the directions they give you, you should be okay with one.  Yes they can get infected but so can a minor cut.

    And for all those that got thru treatment without needing one, I think that is great.  There is nothing better that I would love to see is my husband eating again even if it was just mashed potatoes.  That is nothing better I would love to see is my husband not ever having to go thru what he has gone thru for the last 3 years and to know that he isn't terminal due to this beast.

    Sharon

    Sharon

    Thanks for posting on the public side. Many more will benefit from your thoughtfuil responses and perspective. Next version will clearly define the goal of the document to NOT be some abc guide, score it, do I PEG or not sort of tool. It is not that at all nor was it intended that way, but must have come out slanted just due to the timing and context at the time of being written. In your case, where the document talks about underweight and recurrence situations, may indeed point you to having more discussion with your doctors and between you and your doctor, determine the options and recommended way to go forward to ensure sufficient nutrition is made available during chemo, radiation, and pre-post treatment.

    Also, it is perfectly fine to have your own opinion and vantage point on any and everything including PEG. I encourage you and others to know it perfectly find and even encouraged to present your viewpoint and know we all respect that position. We may agree completely or disagree compleletly and that is fine too. That is what makes things great, being able to have different opinions yet respect each other and all are stronger from the synergy that is created due to the power of many diverse ideas.

    Thanks again, Don

  • donfoo
    donfoo Member Posts: 1,771 Member
    jcortney said:

    Sorry Don

    Man, I've spend days deciding should I weigh in on this one.  I've wrote three different responses but each time decided not to post.  But I think that Sharon's post, which I completely agree with, has spurred me on.  

    I think that you were/are trying to be helpful but if you objectively read your posts and your document it has the feel/tone that PEG tubes are to be avoided or are dangerous or, not brave.  Facts are that there are incredibly few complications (as a percentage) that are directly related to this procedure (all surgery has risks) and a high pain threshold should not necessarily be a deciding consideration if a tube is or is not used.  Most people are by nature will do anything to avoid surgery.  I know I fought getting a G-Tube tooth and nail.  If I read these posts and the new document as it is written, I might have fought harder and the facts DO bear out that PEG's inserted late in treatement are harder on the patient than when instered as a prophalactic early on.

    I think if you did a survey of the folks on this board, past and present, you would find that the overwhelming percentage had some kind of feeding assistance.  Not utilizing a tube is a really great idea, especially from a swallow perspective and I applaud those who are able, because of their constitution, favorable reaction to therapy or other intangibles are able to make it all the way through the journey without their use.  I have also read many posts from folks that have had tubes inserted and were able to never utilize them.  No harm, no foul.  But, the numbers clearly point out that this is not the norm or even possible for most forms of our disease.  One example would be disease that has an undiscovered primary and/or a disease that encompasses both sides of the neck require more radiation and therefore will probably produce more adverse effects late in treatment that, more often than most, will cause swallowing anything other than water almost impossible.  This is obviously just one example of a plethora of cases where a feeding appliance is warranted and necessary.

    A lay document that discusses this subject cannot possibly not take on the bias/conclusions of the author and, from only my personal opinion, can confuse a patient at a very emotional point and cause conflict; which was exactly what you were trying to avoid.

    So, it was a good idea that probably is impossible to accomplish.

    Just my 2¢

    Joe

     

    Thank you!

    I've been wondering where you been hiding? LOL that is  LOL or Laughing I have learned to use these great icons. LOL :-)

    Your comments are consistent with those who have the impression the "guide" was to somehow lead someone with cancer to make some sort of decision about yes/no/when of getting a PEG.

    As stated that never was the intention but I surely acknoledge that may be how it came across. I am working on a new version that will be in line and consistent with the intended goal of the document which really is a wiki/faq sort of slant where many factors relating to PEG are briefly discussed. Each factor is independent and and at most may be some indicator if this factor has more significance in terms of how complex and how much impact this factor may have in the overall scheme of things. There is NO intent to rank, weight, sort, compute any sort of way to use these factors in the document to determine in any way some sort of yes/no/when a PEG would/should be used. I this sense it is really a mutated checklist or dictionary with PEG topics.

    I hope that works better for most. I am going to start redrafting the overall framework and viewpoint of the entire document, still seeking comments on individiual PEG factors and will make a secondary sweep to cover the specific and detailed updates. If factors are missing, suggest them as new, suggest updated verbage as desired, and deleting or combining others, anything that makes sense to you.

    I value and respect every idea so thank you for taking the time to offer up your ideas.

     

    Don

  • George_Baltimore
    George_Baltimore Member Posts: 303
    donfoo said:

    Thank you!

    I've been wondering where you been hiding? LOL that is  LOL or Laughing I have learned to use these great icons. LOL :-)

    Your comments are consistent with those who have the impression the "guide" was to somehow lead someone with cancer to make some sort of decision about yes/no/when of getting a PEG.

    As stated that never was the intention but I surely acknoledge that may be how it came across. I am working on a new version that will be in line and consistent with the intended goal of the document which really is a wiki/faq sort of slant where many factors relating to PEG are briefly discussed. Each factor is independent and and at most may be some indicator if this factor has more significance in terms of how complex and how much impact this factor may have in the overall scheme of things. There is NO intent to rank, weight, sort, compute any sort of way to use these factors in the document to determine in any way some sort of yes/no/when a PEG would/should be used. I this sense it is really a mutated checklist or dictionary with PEG topics.

    I hope that works better for most. I am going to start redrafting the overall framework and viewpoint of the entire document, still seeking comments on individiual PEG factors and will make a secondary sweep to cover the specific and detailed updates. If factors are missing, suggest them as new, suggest updated verbage as desired, and deleting or combining others, anything that makes sense to you.

    I value and respect every idea so thank you for taking the time to offer up your ideas.

     

    Don

    Time for another 2¢

    I've also kept quiet on this issue.  Don, there is no doubt your intentions are good but Joe and Sharon have good points.  I was one of the hardheaded individuals who said no to a tube at first thinking I could swallow the whole way.  WRONG!  I ended up having to have one put in shortly after treatments started.  I was so rundown that I was admitted to the hospital for a week the day after the tube was put in.  You put your life in the hands of doctors to put you on the path to healing.  If he or she says you should get the tube before treatment, they are most likely using their knowledge of your condition to base their decision.  I wholeheartedly agree with Joe when he said about new people looking at your material and making judgements on their treatment.  It just shouldn't be done in my humble opinion.  Sorry.

  • wolfen
    wolfen Member Posts: 1,324 Member
    donfoo said:

    Sharon

    Thanks for posting on the public side. Many more will benefit from your thoughtfuil responses and perspective. Next version will clearly define the goal of the document to NOT be some abc guide, score it, do I PEG or not sort of tool. It is not that at all nor was it intended that way, but must have come out slanted just due to the timing and context at the time of being written. In your case, where the document talks about underweight and recurrence situations, may indeed point you to having more discussion with your doctors and between you and your doctor, determine the options and recommended way to go forward to ensure sufficient nutrition is made available during chemo, radiation, and pre-post treatment.

    Also, it is perfectly fine to have your own opinion and vantage point on any and everything including PEG. I encourage you and others to know it perfectly find and even encouraged to present your viewpoint and know we all respect that position. We may agree completely or disagree compleletly and that is fine too. That is what makes things great, being able to have different opinions yet respect each other and all are stronger from the synergy that is created due to the power of many diverse ideas.

    Thanks again, Don

    Hi Don

    I just wanted to provide some info for your data collection.

    I believe one of the factors in determining whether or not a PEG should be placed is the overall health of the patient. In my husband's case, being a diabetic and a heart patient, it appeared to be a given that a PEG would be required. In fact, on his first visit to the original onc, preparations were underway to place one even before we met with the radiation onc. At that time & being in shock, things seemed to be moving too fast & my hubby was adamant that he would not let that happen. After changing to MDA, the word surrounding PEG placement became "possibility". It did become "reality" again as his condition deteriorated. After losing 65 lbs. before treatments had gotten underway, the doc simply said "We're putting in a PEG". In his case, there's a possibility that he would have succumbed much sooner without it.

    As for problems with a PEG, as I mentioned on another thread, it appears that he had a rare problem with repeated very heavy bleeding at the PEG site. This could be considered for points against a PEG, but apparently a rare occurrence as his surgeon & several other docs had never heard of this.

    And last, but not least....I donated two cases of tube feed(which had been delivered right before he passed away) to the charity St. Vincent De Paul. They provide meals & assitance to the indigent & also have a free clinic. I also gave them 17 bottle of Insulin.

    As for "personal", whatever path one chooses or is chosen for them by their medical team for treatment is "their path" to be trod alone assisted by love, understanding, & compassion from all of us here.

    Luv,

    Wolfen

  • jcortney
    jcortney Member Posts: 503
    wolfen said:

    Hi Don

    I just wanted to provide some info for your data collection.

    I believe one of the factors in determining whether or not a PEG should be placed is the overall health of the patient. In my husband's case, being a diabetic and a heart patient, it appeared to be a given that a PEG would be required. In fact, on his first visit to the original onc, preparations were underway to place one even before we met with the radiation onc. At that time & being in shock, things seemed to be moving too fast & my hubby was adamant that he would not let that happen. After changing to MDA, the word surrounding PEG placement became "possibility". It did become "reality" again as his condition deteriorated. After losing 65 lbs. before treatments had gotten underway, the doc simply said "We're putting in a PEG". In his case, there's a possibility that he would have succumbed much sooner without it.

    As for problems with a PEG, as I mentioned on another thread, it appears that he had a rare problem with repeated very heavy bleeding at the PEG site. This could be considered for points against a PEG, but apparently a rare occurrence as his surgeon & several other docs had never heard of this.

    And last, but not least....I donated two cases of tube feed(which had been delivered right before he passed away) to the charity St. Vincent De Paul. They provide meals & assitance to the indigent & also have a free clinic. I also gave them 17 bottle of Insulin.

    As for "personal", whatever path one chooses or is chosen for them by their medical team for treatment is "their path" to be trod alone assisted by love, understanding, & compassion from all of us here.

    Luv,

    Wolfen

    Great to see you.

    Wolfen,

    I'm really glad to see you around again.  I hope you are well and please don't be a stranger, you are missed.

    Joe

  • wolfen
    wolfen Member Posts: 1,324 Member
    jcortney said:

    Great to see you.

    Wolfen,

    I'm really glad to see you around again.  I hope you are well and please don't be a stranger, you are missed.

    Joe

    Thanks, Joe

    I am not that easy to get rid of.  LOL

    Doing okay here. It is lonely. As I mentined to Phrannie earlier, I have actually been taking care of "someone" for the last fifty years, so it is an odd and unwelcome feeling.

    Glad to see you too and hope that you continue to heal. I know it is a slow and demanding process. This particular cancer and treatments are just so brutal.

    My daughter's last scan showed a little shrinkage in her many lung mets. Will never be any surgery, but at least chemo and her will to survive keeps her going. I HATE CANCER, but then don't we all.

    Luv,

    Wolfen

    P.S. Didn't mean to hijack your post, Don. 

  • alligatorpointer
    alligatorpointer Member Posts: 131
    Pegless Club? Guide?

    Don, I did read your early drafts and you have obviously put a lot of effort into creating a document that you undoubtedly wrote with only the best of helpful intentions and desire to "give back" or "pay it forward" in some way. Smile.  In another thread I responded to you with details regarding having witnessed the positive benefits my son received from using a PEG to keep his nutritional and hydration status optimised during treatment and you invited me to participate in formulating this guide.  I must respectfully decline because I do not think it is in the best interest of newly diagnosed patients to be influenced by a "guide" written by laymen on a forum.  It is my opinion (based on being a live-in caregiver from the beginning of my son's Rad/Cisplatin treatments until scans showed him to be NED after tx was completed) that he would have lost a lot of weight, become significantly weaker, and recovered slower without the benefit of using the PEG during the last two weeks of tx and subsequent several weeks after completion of tx.  However, that is my "opinion" and has no professional basis.  I have been following this thread and agree with others who do not think that a "Pegless Club" and "Guide" is a good thing to present to newcomers on this forum.  Patients who are newly diagnosed may see a "Guide" as some sort of official reccommendation for their decision-making process.  I am especially concerned that you, as a layman creator of this document, will naturally have a bias when editing its tone and content even though you may try very hard to stay neutral and objective.  I am also uncomfortable with the fact that you have had no personal experience with the use of a PEG yourself (nor have any of the "pegless club" forum members who are being solicited for input), yet you feel that you can create a "guide".  It is true that the Onc doctors have probably never had to use a PEG themselves either, but they see patients everyday who do and it is those doctors who must be the ones to provide the guidance for the newly diagnosed based on their upclose and personal professional experience and expertise.  This forum is a wonderful resource for the sharing of tips for dealing with side effects and for reaching out to each other for emotional support and encouragement.  With all due respect, I hope you will reconsider the advisability of a layman written "guide" and let the decision-making process about a PEG remain between the patient and their Oncology team. 

  • jcortney
    jcortney Member Posts: 503

    Pegless Club? Guide?

    Don, I did read your early drafts and you have obviously put a lot of effort into creating a document that you undoubtedly wrote with only the best of helpful intentions and desire to "give back" or "pay it forward" in some way. Smile.  In another thread I responded to you with details regarding having witnessed the positive benefits my son received from using a PEG to keep his nutritional and hydration status optimised during treatment and you invited me to participate in formulating this guide.  I must respectfully decline because I do not think it is in the best interest of newly diagnosed patients to be influenced by a "guide" written by laymen on a forum.  It is my opinion (based on being a live-in caregiver from the beginning of my son's Rad/Cisplatin treatments until scans showed him to be NED after tx was completed) that he would have lost a lot of weight, become significantly weaker, and recovered slower without the benefit of using the PEG during the last two weeks of tx and subsequent several weeks after completion of tx.  However, that is my "opinion" and has no professional basis.  I have been following this thread and agree with others who do not think that a "Pegless Club" and "Guide" is a good thing to present to newcomers on this forum.  Patients who are newly diagnosed may see a "Guide" as some sort of official reccommendation for their decision-making process.  I am especially concerned that you, as a layman creator of this document, will naturally have a bias when editing its tone and content even though you may try very hard to stay neutral and objective.  I am also uncomfortable with the fact that you have had no personal experience with the use of a PEG yourself (nor have any of the "pegless club" forum members who are being solicited for input), yet you feel that you can create a "guide".  It is true that the Onc doctors have probably never had to use a PEG themselves either, but they see patients everyday who do and it is those doctors who must be the ones to provide the guidance for the newly diagnosed based on their upclose and personal professional experience and expertise.  This forum is a wonderful resource for the sharing of tips for dealing with side effects and for reaching out to each other for emotional support and encouragement.  With all due respect, I hope you will reconsider the advisability of a layman written "guide" and let the decision-making process about a PEG remain between the patient and their Oncology team. 

    again, sorry Don but

    Amen.

    J.

  • donfoo
    donfoo Member Posts: 1,771 Member

    Pegless Club? Guide?

    Don, I did read your early drafts and you have obviously put a lot of effort into creating a document that you undoubtedly wrote with only the best of helpful intentions and desire to "give back" or "pay it forward" in some way. Smile.  In another thread I responded to you with details regarding having witnessed the positive benefits my son received from using a PEG to keep his nutritional and hydration status optimised during treatment and you invited me to participate in formulating this guide.  I must respectfully decline because I do not think it is in the best interest of newly diagnosed patients to be influenced by a "guide" written by laymen on a forum.  It is my opinion (based on being a live-in caregiver from the beginning of my son's Rad/Cisplatin treatments until scans showed him to be NED after tx was completed) that he would have lost a lot of weight, become significantly weaker, and recovered slower without the benefit of using the PEG during the last two weeks of tx and subsequent several weeks after completion of tx.  However, that is my "opinion" and has no professional basis.  I have been following this thread and agree with others who do not think that a "Pegless Club" and "Guide" is a good thing to present to newcomers on this forum.  Patients who are newly diagnosed may see a "Guide" as some sort of official reccommendation for their decision-making process.  I am especially concerned that you, as a layman creator of this document, will naturally have a bias when editing its tone and content even though you may try very hard to stay neutral and objective.  I am also uncomfortable with the fact that you have had no personal experience with the use of a PEG yourself (nor have any of the "pegless club" forum members who are being solicited for input), yet you feel that you can create a "guide".  It is true that the Onc doctors have probably never had to use a PEG themselves either, but they see patients everyday who do and it is those doctors who must be the ones to provide the guidance for the newly diagnosed based on their upclose and personal professional experience and expertise.  This forum is a wonderful resource for the sharing of tips for dealing with side effects and for reaching out to each other for emotional support and encouragement.  With all due respect, I hope you will reconsider the advisability of a layman written "guide" and let the decision-making process about a PEG remain between the patient and their Oncology team. 

    Thanks!

    Thanks for comments, many great point, and all valued by me. And I aree 100% with our conclusion. What I early on decided to do was rephrase the document - it will not be called a guide nor is that the intention, now or ever. I will review the entire document and scrub it from having that connotation in symantics, meaning and content. The document will have a clear introduction to clearly define what it is, it's target audience, and what one should expect to come away with once having a read of it. I can say at this point the word guide may be used but as a verb not a noun where the context is the reader is GUIDED to consult with his medical professionals and feel comfortable that the relevaent topics are reviewed and discussed and any/all peg related decisions are personal and based upon the facts unique toe their situation and the how their medical professionals are GUIDING them to recommendations that the patient is free to accept or reject.

    With respect to the term layperson, unless we have medical certifcates stating our qualification in the medical field we are all lay people. So keeping things apples to apples, nothing any lay person says can carry more weight than another. I am fine with that and will state so in the draft and strive to keep the content fact rather than opinion based across the board. However, I would entertain including "opinion" of certified medical professionals but nothing that smells of opiunion from any other class of persons.

    One place I surely put the effort off track right out of the gate was using the terms "pegless club", especially in the title as the comments flowing have made me aware that a broader more balanced approach serving as the foundation for the document would serve much better duty. You are correct that to have any chance of being an effective document, both peg and pegless viewpoints must be taken into consideration. Also, there should be no attempt to create any sense of class here as that just bifurcates the audience away from a well intentioned document. Having all parties, both peg and pegless, getting "equal time" when discussing all included topics and factors serve the document best in striving to see both sides of the coins and all the facets of each issue. Even then the chance of any point being labeled bias remain and the only thing I can say is every attempt will be made to review the document details for accurate wording, literal meaning and figurative intent. What else can one do to make any claim that an issue can be clearly written, no intentional or unintentional bias, allow both side their perspective, and stopping short of supporting either side of the arguement.

    Thanks again for your input. If you feel there remains any substantial failure of rebuttal, I am willing to go around again and hopefully get closer to understanding. 

    One thing all people should be aware of is I strongly feel to the core is we have a tremendous opportunity today help shape the development of a well written document discussing relevant PEG topics.  Far more benefit comes from the existance rather the absence of such a document.  And there is a high possibility that we can increase the awareness and knowledge of a cancer patient facing the possible need for a supplemental feeding system while taking the hot from the topic to boot.

    I encourage you all to remain engaged and continue to offer your input on each new draft.

    Regards,don