feeding tube questions

I've been reading several posts about the PEG. I'm through with treatment for my advanced nasal and eye cancer. I've lost so much weight...down to 100 pounds. Before everything I only weighed 115 anyways. My doctor didn't want to give me a tube cause he said could lead to infection. HOWEVER, I can't swallow, have tons of yucky mucus, and no appetite, not even for water. Water actualy tastes horrible. I'm going to demand the tube. He did tell me Friday that he'll probably have to give me one.

1. Can you take your medicines through the tube?
2. Are you given anesthesia to put it in. How long does that take? My doctor says I'm almost too weak and frail for this.

3. Can you make your owwn liquids, smoothies to put in the tube?


4. When did yall get yalls appetite back? Will I ever want to eat again?

5. Someone said they lost weight. Can you lose more weight with a tube????

I'm looking forward to hearing yalls answers. Going crazy here

Comments

  • Hal61
    Hal61 Member Posts: 655
    Tubin'
    Hi Kim, good questions. Percentage-wise, you haven't lost a lot of weight, but since you only weighed 115, you don't want to lose any more. I'm nost sure why your doc didn't want to put in a tube because he was afraid of infection. That's not generally a concern, but, he may have reason relating specifically to your case that gave him that thought.

    If he's already said he'll likely give you one, and getting food down is like you say--and I know how that is, I'm closing on two years after surgery, 35 rads, and cisplatin--then the tube is a good idea.

    You can take medicines throught the tube, pills can be broken up, and put in, liquids of course.

    I'm not sure what you mean my anesthesia? Pain killers, etc. same as above.

    You can make your own smoothies, just check with the doc or the cancer dietician to make sure the ingredients you use are o.k.; then make sure everything is very clean. I always just stuck with the canned liquid my insurance company and doc decided on for me. But over the counter stuff like Ensure is always fine.

    You can gain weight with a tube, but it's not easy. It's much easier to gain weight once you can eat solid food, but there are lots of good hi-cal recipes available for the tube. Use Sweetbloods SuperThread to find more info on this and other eating topics.

    Took me over a year after treatment to start eating knd of right. I remember when water tasted like warm sweat very well.

    hope the tube does you some good, best

    Hal
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    It sounds like you don't have a choice
    The can't swallow thing is the issue. Hal pretty much rounded out all the key points. You may not gain a bunch of weight with a tube, but under your current circumstances, you are bound to lose more if you don't have one.

    Your life sounds better off with the tube placed about as quickly as you can get it there. You can sort all this other out pretty fast, once you turn the fluid and nutritional balance around.

    Best,

    Pat
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    Hal61 said:

    Tubin'
    Hi Kim, good questions. Percentage-wise, you haven't lost a lot of weight, but since you only weighed 115, you don't want to lose any more. I'm nost sure why your doc didn't want to put in a tube because he was afraid of infection. That's not generally a concern, but, he may have reason relating specifically to your case that gave him that thought.

    If he's already said he'll likely give you one, and getting food down is like you say--and I know how that is, I'm closing on two years after surgery, 35 rads, and cisplatin--then the tube is a good idea.

    You can take medicines throught the tube, pills can be broken up, and put in, liquids of course.

    I'm not sure what you mean my anesthesia? Pain killers, etc. same as above.

    You can make your own smoothies, just check with the doc or the cancer dietician to make sure the ingredients you use are o.k.; then make sure everything is very clean. I always just stuck with the canned liquid my insurance company and doc decided on for me. But over the counter stuff like Ensure is always fine.

    You can gain weight with a tube, but it's not easy. It's much easier to gain weight once you can eat solid food, but there are lots of good hi-cal recipes available for the tube. Use Sweetbloods SuperThread to find more info on this and other eating topics.

    Took me over a year after treatment to start eating knd of right. I remember when water tasted like warm sweat very well.

    hope the tube does you some good, best

    Hal

    Meds
    The only caveat I would have about medications is that you will probably NOT be able to take any via tube if they are time released. Check with your doc about those. It may be that they can offer a non-time released version or even another medication that will go down the tube.

    Best wishes.

    Take care,

    Joe
  • kim50
    kim50 Member Posts: 34

    It sounds like you don't have a choice
    The can't swallow thing is the issue. Hal pretty much rounded out all the key points. You may not gain a bunch of weight with a tube, but under your current circumstances, you are bound to lose more if you don't have one.

    Your life sounds better off with the tube placed about as quickly as you can get it there. You can sort all this other out pretty fast, once you turn the fluid and nutritional balance around.

    Best,

    Pat

    Gosh yall are wonderful with
    Gosh yall are wonderful with the answers to my questions. Thank you very much. I try to eat but just can't do it. I've gotten very depressed about the whole thing. I really want this tube in before I waste away. I'll try some of the recipies on the thread. I'm scheduled to see my doc. on Wed. Can't wait!
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    kim50 said:

    Gosh yall are wonderful with
    Gosh yall are wonderful with the answers to my questions. Thank you very much. I try to eat but just can't do it. I've gotten very depressed about the whole thing. I really want this tube in before I waste away. I'll try some of the recipies on the thread. I'm scheduled to see my doc. on Wed. Can't wait!

    tube
    Kim, my husband never had to use his tube but I must tell you that I agree you should get one. Jim had no weight loss during treatment but about three months out of successful radiation and chemotherapy for hypopharyngeal cancer, he lost about 35 pounds. His doctors said this is the typical time for weight loss for the treatment he had.

    Jim never stopped eating and we used the tube only to irrigate it. He did not lose his appetite so he had that advantage. However, Jim dealt with the mucus issues: his doctor prescribed Mucinex and a saline spray for his nose. These took care of the problems he had.

    Even with the tube you will need to keep eating things and swallowing. This is very important.

    Hang in there.
  • Jim B
    Jim B Member Posts: 4
    Gastric Feeding Tube
    I read your note on the doctor not wanting to give you a feeding tube. I was given a PICC and a Gastric Feeding Tube prior to starting my Chemo and Radiation treatments. The doctor also prescribed a canned nutitional supplement (Jevity), specially made for administering through the feeding tube. They also said that I must continue eating through my mouth to maintain the swallowing mechanisms. I only use the feeding tube to supplement my nutitional intake, most of my nutition I still take through my mouth. There is a Lidocain 2% rinse solution to help you numb your throat to allow swallowing.
    I am on my 14th out of 35 Radiation treatments and number 4 out of 8 Chemo therapies. My throat is VERY SORE, I can no longer taste foods or even sweets. I am forcing myself to eat orally. My Dr. told me that if I depend solely on my feeding tube that I could lose the ability to swallow permanently! This would mean that I would have to depend on nutition through my feeding tube for the rest of my life. I will continue to force down food orally.
    When using the feeding tube, you have to flush the tube with distilled water, both before and after you use the tube for feeding. I was provided with large syringes, specifically used for flushing the tube. When I have difficulty in swallowing my meds, I use a pill crusher for solid pills and open capsules and put the ground contents in warm water and use the syringe to inject the medicine into my feeding tube. This works well!

    The feeding tube is a good thing but do not rely on it solely for your nutition, if you can help it.

    If you have any other questions, please ask.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    Jim B said:

    Gastric Feeding Tube
    I read your note on the doctor not wanting to give you a feeding tube. I was given a PICC and a Gastric Feeding Tube prior to starting my Chemo and Radiation treatments. The doctor also prescribed a canned nutitional supplement (Jevity), specially made for administering through the feeding tube. They also said that I must continue eating through my mouth to maintain the swallowing mechanisms. I only use the feeding tube to supplement my nutitional intake, most of my nutition I still take through my mouth. There is a Lidocain 2% rinse solution to help you numb your throat to allow swallowing.
    I am on my 14th out of 35 Radiation treatments and number 4 out of 8 Chemo therapies. My throat is VERY SORE, I can no longer taste foods or even sweets. I am forcing myself to eat orally. My Dr. told me that if I depend solely on my feeding tube that I could lose the ability to swallow permanently! This would mean that I would have to depend on nutition through my feeding tube for the rest of my life. I will continue to force down food orally.
    When using the feeding tube, you have to flush the tube with distilled water, both before and after you use the tube for feeding. I was provided with large syringes, specifically used for flushing the tube. When I have difficulty in swallowing my meds, I use a pill crusher for solid pills and open capsules and put the ground contents in warm water and use the syringe to inject the medicine into my feeding tube. This works well!

    The feeding tube is a good thing but do not rely on it solely for your nutition, if you can help it.

    If you have any other questions, please ask.

    FYI
    Good comments, Jim B, but it is important to remember that there are different kinds of feeding tubes that offer different kinds of difficulties and solutions.

    I would really like for sweetblood to post on her all-encompassing site (or nearly so), pictures of all of the types of tubes and what they are called. I think that has been a point of confusion for many.

    Take care,

    Joe

    (And yes, Jim, great point about the need for a pill crusher or pestle to grind down the pills in many cases.)
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    I am really surprised that
    I am really surprised that at a 115 pounds, they didn't put one in before you started! I had no real weight to lose when I started and every single one of my doctors I saw, told me to get that tube. I refused in the beginning, but then relented. It saved my life.

    1. Yes, you can take some medicines through the tube. Some also can be made in liquid form. Just remind them of this every time. I also had fentanyl ad a pain patch.

    2. I was given anesthesia for my procedure. In and out same day surgery.

    3. Yes, you can make your own smoothies and tube food. YOU MUST have a good blender emulsifier like a Vitamix, (the company offers discounts for cancer survivors or medical necessities. I think you need a note from a physician is all, but it's a significant discount. Other high speed blenders, like a HealthMaster are good too. You must also strain it and thin it so it moves through the tube. I put yogurt and baby food mixed into my canned foods to supplement them. Never clogged my tube. Check in the liquid nutrition section in the Superthread, especially for Lucy's Real Food. Also there are a ton of smoothie and peg tube alternative info in there! Lots of food, recipes and nutrition and help with eating there.

    Here is the link for you:

    HNC  SUPERTHREAD

    4. Took a long time for me to get my appetite back. Well over a year, for me, almost two. But I was slow with healing and had many issues. Now I am always starving and it's really annoying to be hungry all the time again. I'm not used to it.

    5. Yes, you can lose weight on the tube. I did, I was down to 87 pounds. (i lost 40lbs) But that was because I could not control my nausea with even the meds they gave me. I maintained my weigh all through radiation, it was after radiation, that I was so sick. You must get in enough calories. I worked with my team of nutritionists. I also had to up my calories to 2400 a day, JUST TO MAINTAIN MY WEIGHT. You may need more calories, because your body is under stress. If you experience nausea and meds don't help, sometimes putting in the liquids super slow can help. I was finally prescribed a pump, and used that overnight while I slept, was hooked up for 13 hrs, because it had to go really slow. But it worked.

    Hope you get this. If you have any more questions, you can private message me, as well.
  • sweetblood22
    sweetblood22 Member Posts: 3,228

    FYI
    Good comments, Jim B, but it is important to remember that there are different kinds of feeding tubes that offer different kinds of difficulties and solutions.

    I would really like for sweetblood to post on her all-encompassing site (or nearly so), pictures of all of the types of tubes and what they are called. I think that has been a point of confusion for many.

    Take care,

    Joe

    (And yes, Jim, great point about the need for a pill crusher or pestle to grind down the pills in many cases.)

    Soccerfreaks
    No sure why i didn't see this before, when I posted the other day. I do have a couple different examples of tubes posted in the Superthread tho.