I SURRENDER - THE PEG GOES IN NEXT TUESDAY

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luv4lacrosse
luv4lacrosse Member Posts: 1,410 Member
edited March 2014 in Head and Neck Cancer #1
Wow, the beast got me on this one. I approached this whole thing with an apparrent unrealistic goal. I wanted to come out the other end without ever needing any type of assisted feeding device. I have been logging my dailiy intake of water and total calories ingested for each day. The best day I had this week was maybe 1,100 calories and 60 oz. of water. After my Radiation Treatment today, I had a visit with my Chemo Team and told them I am ready to proceed. Since my last of 3 surgeries on August 6th, I have lost 36 Lbs, and they are dropping faster as each week goes by. On Monday I have my 2nd Cisplatin infusion which is an all day thing. They will go ahead and admit me and put the PEG in sometime Tuesday. I should be back home by Thursday.

I am looking at this not as a crutch or a weakness. but a tool to aid me in a smart recovery for the long haul. I can now focus on a painless feeding while not abusing my completely raw mouth by trying to put everything through the mouth.

All The Best to you guys and have an awrsome weekend.

BEST!!

Mike
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  • DJG1
    DJG1 Member Posts: 121
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    Prayers with you
    Mike,
    This sounds like a good decision. I am sorry you are having so much pain. You are ahead of me by about a week. I just completed my 11 of 33 treatment today. I also have the sores in mouth, and tongue feels awful. I can still sallow. Know we will all be thinking of you and saying a prayer. Keep us posted.
    Debbie
  • Kimba1505
    Kimba1505 Member Posts: 557
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    DJG1 said:

    Prayers with you
    Mike,
    This sounds like a good decision. I am sorry you are having so much pain. You are ahead of me by about a week. I just completed my 11 of 33 treatment today. I also have the sores in mouth, and tongue feels awful. I can still sallow. Know we will all be thinking of you and saying a prayer. Keep us posted.
    Debbie

    Not a failure.
    Mike,
    This step (PEG) is par for the course. It is in no means a sign of weakness or failure. If anything, you have been setting yourself up to think that you will NOT need it. Use it. Keep swallowing. Then get rid of it. It is just part of the process of this fight. Just keep swallowing. And if you are going to drink fluids...drink calories. This was the most useful advice from the nutritionist that would pop in occasionally. Drink gatorade, Vitamin water, or something else with calories. DRINK CALORIES.
    You are doing great. Accept the process. There is no failure...just forward.
    Best,
    Kim
  • RushFan
    RushFan Member Posts: 224
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    Your attitude is great and
    Your attitude is great and will pull you through to the other side. Will be pulling and praying for you Tuesday. Have a restful weekend and get after it next week!

    Best to you, and all here.
    Chuck.
  • delnative
    delnative Member Posts: 450
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    Kimba1505 said:

    Not a failure.
    Mike,
    This step (PEG) is par for the course. It is in no means a sign of weakness or failure. If anything, you have been setting yourself up to think that you will NOT need it. Use it. Keep swallowing. Then get rid of it. It is just part of the process of this fight. Just keep swallowing. And if you are going to drink fluids...drink calories. This was the most useful advice from the nutritionist that would pop in occasionally. Drink gatorade, Vitamin water, or something else with calories. DRINK CALORIES.
    You are doing great. Accept the process. There is no failure...just forward.
    Best,
    Kim

    A crutch or a weakness?
    Hell no. Look at it as something that will keep your body healthy enough to withstand everything that's being thrown at it.
    The PEG is a good thing.

    --Jim in Delaware
  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    RushFan said:

    Your attitude is great and
    Your attitude is great and will pull you through to the other side. Will be pulling and praying for you Tuesday. Have a restful weekend and get after it next week!

    Best to you, and all here.
    Chuck.

    "I am looking at this not as
    "I am looking at this not as a crutch or a weakness. but a tool to aid me in a smart recovery for the long haul. I can now focus on a painless feeding while not abusing my completely raw mouth by trying to put everything through the mouth"

    That is actually the exact way you should be looking at it. I had mine placed before rads with no intention of using it. That didn't last long. It really is a life saving tool. People don't understand it unless they've been through it. I'm glad you are getting it done.
  • Scambuster
    Scambuster Member Posts: 973
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    "I am looking at this not as
    "I am looking at this not as a crutch or a weakness. but a tool to aid me in a smart recovery for the long haul. I can now focus on a painless feeding while not abusing my completely raw mouth by trying to put everything through the mouth"

    That is actually the exact way you should be looking at it. I had mine placed before rads with no intention of using it. That didn't last long. It really is a life saving tool. People don't understand it unless they've been through it. I'm glad you are getting it done.

    Good Call..
    Mike,

    It is a temporary thing, and will help get some grits into you while your poor old mouth and throat are mending. You can also pump some good vits etc into the tube which you otherwise would not be able to do. Once yo are through, and can start eating again, you sort do a 90% PEG + 10% be mouth, 85% PEG 15% My mouth etc until you get back to 0% and 100%. Treat the little 'Alien' as a friend as it will help you get through for now.

    Get yourself a good quality small Mortar and Pestle, preferably one made in 'Ceramic'. Mine is 2.5" across the top so slightly bigger than an Italian Espresso cup. Good for crushing up pills etc.

    Stay strong. You will be fine Mike even though the road is a little rough right now.

    Scam
  • Glenna M
    Glenna M Member Posts: 1,576
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    You are not weak...
    Mike, you are not weak. Many of us had the PEG before treatment started and tried not to use it..but failed. It is also not a crutch, in many cases, myself included, it was a necessity to survive. You need all the calories, nutrition and water you can get during treatment. If it requires the use of the tube to get these then that is what you have to do.

    Stay well,
    Glenna
  • Glenna M
    Glenna M Member Posts: 1,576
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    You are not weak
    Sorry, double post ;-)
  • rush1958
    rush1958 Member Posts: 223 Member
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    Hang Tough
    Mike,

    Hang in there dude! It's tough, but it's worth it.

    Rush
  • staceya
    staceya Member Posts: 720
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    rush1958 said:

    Hang Tough
    Mike,

    Hang in there dude! It's tough, but it's worth it.

    Rush

    You are doing the right thing
    I wish the tube were a required part of the treatment plan, similar to the port or picc.
    This would take the burden and associated stress and emotion off of the patient. I really struggled with the emotional aspects. People see getting the tube as a failure, yet we don't see getting the port or a picc as a failure. We see the port and picc as they are: a TOOL to facilitate treatment. You get the Port to bypass the need for frequent IV starts on fragile veins and provide a mechanism for delivery of chemo. You get the tube to bypass the fragile throat and esophagus and provide a mechanism for delivery of nutrition. It is the same thing. Yet the decision was left to me. When did I become a nutritional expert? Answer- never especially when malnourished! I think we do not need the added stress, when there is enough going on. It should be part of the plan, if we feel strongly enough we could always decline. You are absolutely doing the right thing. You will get through this!
    Take care
    Stacey
  • Donna70
    Donna70 Member Posts: 852 Member
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    staceya said:

    You are doing the right thing
    I wish the tube were a required part of the treatment plan, similar to the port or picc.
    This would take the burden and associated stress and emotion off of the patient. I really struggled with the emotional aspects. People see getting the tube as a failure, yet we don't see getting the port or a picc as a failure. We see the port and picc as they are: a TOOL to facilitate treatment. You get the Port to bypass the need for frequent IV starts on fragile veins and provide a mechanism for delivery of chemo. You get the tube to bypass the fragile throat and esophagus and provide a mechanism for delivery of nutrition. It is the same thing. Yet the decision was left to me. When did I become a nutritional expert? Answer- never especially when malnourished! I think we do not need the added stress, when there is enough going on. It should be part of the plan, if we feel strongly enough we could always decline. You are absolutely doing the right thing. You will get through this!
    Take care
    Stacey

    From the EC board there is an answer to mouth sores!!
    Hi,
    Just visiting your board since I know someone recently dx'd with throat cancer and I saw many of you mentioning mouth sores. I had a lot of trouble with this when I got 5 FU and Cisplatin prior to my esophagectomy and the best thing for them was liquid Acyclovir. It was so good at clearing them up I kept taking it for maintenance till they cleared and also took it prophylactically during my post surgery chemo. It worked much better than the Magic Mouthwash and all the other things I tried. Also wanted to say a yes to the j tube. It was a lifesaver and most of us EC pts receive it at surgery or before if needed. I was kept on it for 3 months and would not be alive without it. Good luck to all of you and hope you don't mind my visiting your site. You all have wonderful positive attitudes and know what works best for you.
    Donna70
  • adventurebob
    adventurebob Member Posts: 691
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    Surrender isn't defeat
    Hey Mike,

    Sorry to hear about your pain. Hopefully the tube alleviates a good chunk of that. I'm scheduled to get mine in next week also. It'll be ok for both of us. All the best to you.

    Bob
  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    staceya said:

    You are doing the right thing
    I wish the tube were a required part of the treatment plan, similar to the port or picc.
    This would take the burden and associated stress and emotion off of the patient. I really struggled with the emotional aspects. People see getting the tube as a failure, yet we don't see getting the port or a picc as a failure. We see the port and picc as they are: a TOOL to facilitate treatment. You get the Port to bypass the need for frequent IV starts on fragile veins and provide a mechanism for delivery of chemo. You get the tube to bypass the fragile throat and esophagus and provide a mechanism for delivery of nutrition. It is the same thing. Yet the decision was left to me. When did I become a nutritional expert? Answer- never especially when malnourished! I think we do not need the added stress, when there is enough going on. It should be part of the plan, if we feel strongly enough we could always decline. You are absolutely doing the right thing. You will get through this!
    Take care
    Stacey

    Excellent post, Stacey.
    I couldn't agree more with your post. I wasn't going to get mine before rads and every health care professional advised me to get it done and I am glad I did. It's true though, I don't know why I felt sort of like a failure when I had to use it and couldn't swallow until i realized all the people who were telling me I needed to eat by mouth never had rads and had no clue how painful it was. Even when I was three months out of rads my RO looked in my mouth and said, "I can see why you aren't eating. It would be impossible for someone to eat with that."

    Even my step mom would say to me, you have to force yourself, I would force myself. Never say what you would do cause you just don't know.

    I think for people that are at their optimum weight and don't have it to lose it should just be part of treatment.
  • D Lewis
    D Lewis Member Posts: 1,581 Member
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    Excellent decision
    I had my tube put in at week four, just after my second round of chemo. I hadn't gotten one previously, because my radiation oncologist really didn't think it would be necessary. My chemo oncologist disagreed from the outset. I used it agressively, regained lost weight, and was able to have it removed somewhere between four and six weeks after treatment ended.

    Deb
  • KristynRuth86
    KristynRuth86 Member Posts: 140
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    Surrender isn't defeat
    Hey Mike,

    Sorry to hear about your pain. Hopefully the tube alleviates a good chunk of that. I'm scheduled to get mine in next week also. It'll be ok for both of us. All the best to you.

    Bob

    PEG
    None of my Dr.s have recommended the PEG yet, I guess because I haven't lost much weight. I wish they would though. Eating is such a chore and I also have the mouth sores and swallowing is torture! I wish you the best on the PEG and I'd think of it as a blessing! Now you dont have to go through the agony of puttin tasteless food into your sore mouth and having to swallow it! Good luck with everything!
  • D Lewis
    D Lewis Member Posts: 1,581 Member
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    PEG
    None of my Dr.s have recommended the PEG yet, I guess because I haven't lost much weight. I wish they would though. Eating is such a chore and I also have the mouth sores and swallowing is torture! I wish you the best on the PEG and I'd think of it as a blessing! Now you dont have to go through the agony of puttin tasteless food into your sore mouth and having to swallow it! Good luck with everything!

    Kristyn
    Kristyn,

    If you need the PEG, ask your doctor to refer you to a gastroenterologist to have it put in. The oncologists will do the referral if you need it. All you have to do is tell them.

    Mine was an afternoon of outpatient surgery, and I was using it successfully by that evening.

    Good luck with your eating, girlfriend, and hang in there! All the best to you.

    Deb
  • charles55
    charles55 Member Posts: 87
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    forward on the PEG tube
    Mike, you are not surrendering, you are just doing the right thing. I was the exact same. I denied, denied, denied, then finally saw it was the best thing to do. And real soon, I wondered why I was so stubborn. It wasn't a big deal and it helped so much. Sometimes I just let my head get in the way.
  • JUDYV5
    JUDYV5 Member Posts: 392
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    Mike
    I hated the peg - but it was totally worth it. It will help you get through the rest of your treatments. The main goal now is getting through this. Always in my prayers.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    JUDYV5 said:

    Mike
    I hated the peg - but it was totally worth it. It will help you get through the rest of your treatments. The main goal now is getting through this. Always in my prayers.

    PEG or NO PEG
    It's all tough, either way...

    I didn't have the PEG, but that was just me...would have if I needed it though.

    It all comes down to what we all say.....

    "Everyone is different"....

    Do whatever it takes to get you through it with the least amount of pain and suffering.

    BTW, I had a great day fishing today (five flounder 12 1/2" - 18 1/2"). While at the ramp I was talking to these two old buddies that were loading up their boat also.

    One of them had throat cancer, chemo, radiation and a neck dissection....11 years ago. He was laughing his butt off, says every day is great. As far as he is concerned, he's living on borrowed time.

    Just thought I'd share that...11 years and going strong. They were probably both in their late sixties.

    Best,
    John
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
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    Skiffin16 said:

    PEG or NO PEG
    It's all tough, either way...

    I didn't have the PEG, but that was just me...would have if I needed it though.

    It all comes down to what we all say.....

    "Everyone is different"....

    Do whatever it takes to get you through it with the least amount of pain and suffering.

    BTW, I had a great day fishing today (five flounder 12 1/2" - 18 1/2"). While at the ramp I was talking to these two old buddies that were loading up their boat also.

    One of them had throat cancer, chemo, radiation and a neck dissection....11 years ago. He was laughing his butt off, says every day is great. As far as he is concerned, he's living on borrowed time.

    Just thought I'd share that...11 years and going strong. They were probably both in their late sixties.

    Best,
    John

    Mike
    Got my PEG before treatment started, and haven't regretted it since the end of the first week of treatment. Just makes sense, to me, to eliminate the struggle that goes with H&N treatment. As Jim said- it is a good thing. Jevity for me, with the concentration that only required 4 feedings/day. Good luck.

    kcass