How long till my hubby gets feeling better

oldpaint03
oldpaint03 Member Posts: 27 Member
edited March 2014 in Head and Neck Cancer #1
My husband just finished treatment for SCC BOT with 2 nodes on each side of neck. He had 7 weeks of cisplatin and 35 radiation treatments. He has lost 40# and will only use Ensure in his peg tube. He thinks adding anything else will either make him throw up or plug up his tube. I have read on here that some of you have used protien powers and instant breakfast. Did you put this in your tube? He has been very sick and his mouth and throat are raw but he needs more calories. How long did it take you for your mouth and throat to start to heal? I have seen some of Dennis' posts and my Hubby sounds just like that. I will be so Happy when he gets feeling better I just dont know what to do to help him. Any advice would be apreciated.

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi oldpaint
    Time is a great healer, but remember we are all different so healing may take longer for some then others, you can look for anywhere between two months to a year before some start doing better. On the feeding you are correct you need to be pumping in as may calories as possible for him to start gaining his weight back.

    Take care and keep doing well
  • fsdman
    fsdman Member Posts: 51
    #3
    Give it time. Everyone is
    Give it time. Everyone is different. After treatment( I lost 60 lbs )it took a few weeks before it stopped getting worse. After about 4 weeks I started to notice some good days.They increased-up and down,good and bad etc. Stay hydrated !!! I put a lot of water down my tube each day -it cleanes out all the crap they put into us. I drink a lot of malts with eggs and ice cream and weight gainer powder to keep my weight up at first. Again,give it time and all are different. Stay positive-I cried for no reason. Let the Drs know how he feels.Good luck.
    Bob
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    Ensure Plus
    Like mentioned about four weeks post treatment he should start feeling better a little at a time, it's a long slow process....some are sooner, some longer.

    I also had Cisplatin along with Taxotere, 5FU an Carboplatin, including 35 rad treatments.

    The last 3-4 weeks of rads and next 3-4 I survived nearly exclusively off of Ensure Plus and water, preceeded by a healthy amount of pain meds just to get that in me...I didn't have a PEG.

    My thinking was that for the least amount of pain, the Ensure gave me the most bang for the buck. Each can being around 350 calories...so drinking anywhere from at least six cans a day would give me 2100 calories.

    Hang in there, light at the end of the tunnel is growing closer.

    Best,
    John
  • ratface
    ratface Member Posts: 1,337 Member
    #5
    Skiffin16 said:

    Ensure Plus
    Like mentioned about four weeks post treatment he should start feeling better a little at a time, it's a long slow process....some are sooner, some longer.

    I also had Cisplatin along with Taxotere, 5FU an Carboplatin, including 35 rad treatments.

    The last 3-4 weeks of rads and next 3-4 I survived nearly exclusively off of Ensure Plus and water, preceeded by a healthy amount of pain meds just to get that in me...I didn't have a PEG.

    My thinking was that for the least amount of pain, the Ensure gave me the most bang for the buck. Each can being around 350 calories...so drinking anywhere from at least six cans a day would give me 2100 calories.

    Hang in there, light at the end of the tunnel is growing closer.

    Best,
    John

    You might try
    the professional hospital grade nutrional supplements, Jevity comes to mind. They come in different caloric amounts depending on your needs. You should also talk to a nutrionist from the hospital. Many insurance plans cover the supplements and can be delivered right to your door. You can literally put anything through the tube as long as it goes in the blender first. I personally put a meatball through it.
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #6
    ratface said:

    You might try
    the professional hospital grade nutrional supplements, Jevity comes to mind. They come in different caloric amounts depending on your needs. You should also talk to a nutrionist from the hospital. Many insurance plans cover the supplements and can be delivered right to your door. You can literally put anything through the tube as long as it goes in the blender first. I personally put a meatball through it.

    Okay, now I'm impressed...
    A meatball? Go Ratface!

    Deb
  • buzz99
    buzz99 Member Posts: 404
    #7
    Right with you Old Paint
    Hi there. My hubby, Buzz, just finished his treatment on January 10 and I too am anxious for him to get better. He has a PEG and is dependent on it for all of his nutrition. We have a prescription formula for his tube feedings and I flush it 5 times per day with lots of water. Walgreens delivers the formula along with all the supplies we need. I am surprised you did not get a prescription for tube feeding formula when you started using the tube. I have not tried putting anything in the tube other than the formula for fear it will clog. Use high calorie supplements and flush with plenty of water. (Buzz has had dreams of eating "cowboy" burgers and we have joked about putting that through the tube). Everyone says the 2 weeks after radiation are the worst so it will get better but it is difficult to be patient.
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #8
    I used Jevity exclusively in my PEG tube.
    Chemo never made me vomit, but kept me feeling nauseous. I used the PEG through the last half of my treatment regime, and used a pump to slowly infuse the Jevity to keep me from vomiting it back up - mostly I would pump one can per half-hour. About two weeks after treatment ended, I realized that I wasn't a chemo-sickie any more, and I got tired of being hitched to the pump. I started using a syringe to bolus feed the Jevity and it went in a lot faster. About a week after that, I figured out that even though my tongue and throat were still raw, it was okay to put tiny bites of soft stuff in my mouth and try to swallow it. Then, my doctor told me that Carnation Instant Breakfast was better for me than the darned Jevity. At that point, I wanted the PEG tube out so bad that I quit using it, and started pouring the Carnation stuff down my throat. A month later, they let me take out the tube, even though I was subsisting mostly on Carnation, scrambled eggs and jello. Eight months later, the rest is history. I'm still drinking at least two Carnation drinks daily, but eating most foods albeit in tiny bites, with lots of milk or water, and liberal us of olive oil and butter.

    Best of luck to your husband in his efforts to recover. It is a very gradual process, and you have to count the improvements as the weeks pass, rather than as the days pass.

    Deb
  • ekdennie
    ekdennie Member Posts: 238 Member
    #9
    feeling better
    i didn't have a peg tube, but I used high protein boost...it made me feel full and with enough of them I was able to keep my calories where they needed to be. there is also a product called Scandi shake...it has a lot of calories and protein in a smaller dose. almost three times as much in the same number of ounces as a boost. you have to mix it with whole milk, but it helped me...I couldn't even drink the whole thing...it was so full of calories, but when it hurt the most, at least I knew I was getting a lot of calories per swallow. my throat began to feel better about two to three weeks post treatment and I am now 2 months out...I have problems with certain foods and textures and I have to really chew my food, but I am getting there. I wish you and your husband luck in getting there too. oh, and if all he will eat are boost...then I would probably just stock up on boost. have him try to swallow water or milk (felt better on my throat), to help keep his swallowing instinct in tact...it always helped me get a couple of swallows down when I was in a lot of pain to remember that if I didn't I might not be able to swallow.
    i know it has got to be hard to watch him in pain...it was for my whole family, but the pain is a sign that his body is healing...if there is too much pain, see if his doctor can adjust his meds, mine did and it helped me a whole lot....I was able to get some sleep...my pain had been keeping me awake.
    wishing you the best and that he starts to feel less pain soon!

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