PET Cancelled

Hondo
Hondo Member Posts: 6,636 Member
in Head and Neck Cancer #1
Had to Cancelled the PET scan due to some other problems, it was not my normal 6 months scan just a mid scan to check on the aspiration in the lungs. I am still looking at possibly getting a PEG tube like Denny to help go around the issue with have to take everything in through the mouth and getting stuff accidently backed-up into the lungs

Thanks everyone for the prayers
Hondo

Comments

  • mixleader
    mixleader Member Posts: 267 Member
    #2
    No PET
    Hi, Hondo. I'm sorry to hear about the cancelled scan and sorry to hear about your problems with a possible PEG. Is this something new? Best of luck and wishes and prayers are with you.

    Roger
  • pattyanny
    pattyanny Member Posts: 544
    #3
    Sorry Hondo about the
    Sorry Hondo about the cancellation, but as we know, everything happens in His time not ours. I hate the anticipation then the cancellation as I am not a patient person. Sorry also to hear of the lung problem. Let us know what you decide to do, but just because your PET was cancelled, does not mean I will stop praying! :)

    Love & Prayers,
    Patty
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    mixleader said:

    No PET
    Hi, Hondo. I'm sorry to hear about the cancelled scan and sorry to hear about your problems with a possible PEG. Is this something new? Best of luck and wishes and prayers are with you.

    Roger

    Hi Roger

    I’ve been having a lot of problems swallowing food and sometime even water. It goes into my lungs and I aspirate because of it. Another guy here on H&N Denny who was having the same problem he got a PEG tub and is doing very well with it and not having problems with aspiration anymore. So I am looking at doing the same thing to see if it will help me as well. Thanks for the prayers

    Hondo
  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    pattyanny said:

    Sorry Hondo about the
    Sorry Hondo about the cancellation, but as we know, everything happens in His time not ours. I hate the anticipation then the cancellation as I am not a patient person. Sorry also to hear of the lung problem. Let us know what you decide to do, but just because your PET was cancelled, does not mean I will stop praying! :)

    Love & Prayers,
    Patty

    Hi Patty

    You are so right we just need to put it all in the hand of faith because He knows best. Hoping the PEG tube thing will do the trick with the lung problem. Ijust got to convince the Dr and insurance people it is the best way to go and not wait till I get pneumonia 3 or 4 times before agreeing it needs to be done. Thanks for your continuing prayers.

    God bless
    Hondo
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #6
    PET Cancelled.
    Keep us posted, Hondo.
  • Ingrid K
    Ingrid K Member Posts: 813
    #7
    sweetblood22 said:

    PET Cancelled.
    Keep us posted, Hondo.

    PEG
    Hondo, it does sound like you would be a good candidate for the PEG... at least I hope they let you try it for a few months to see if it improves your situation. I have had my PEG for almost one year and it really has saved me. There are days that I almost forget about it. I still try every day to eat real food, but my taste buds are nearly gone from the radiation, so it's good to know that I am getting the nutrition/calories I need from the PEG and everything else is a bonus. GOOD luck to you my friend and fellow survivor.
  • stevenl
    stevenl Member Posts: 587
    #8
    Ingrid K said:

    PEG
    Hondo, it does sound like you would be a good candidate for the PEG... at least I hope they let you try it for a few months to see if it improves your situation. I have had my PEG for almost one year and it really has saved me. There are days that I almost forget about it. I still try every day to eat real food, but my taste buds are nearly gone from the radiation, so it's good to know that I am getting the nutrition/calories I need from the PEG and everything else is a bonus. GOOD luck to you my friend and fellow survivor.

    Peg
    Hondo,
    Wishing the best for you. I don't know if you have had a peg before, I'm sorry
    just can't remember. If not it is not a big deal, and in fact you can feed
    at night and really bolster your strength. Prayers as always, you are truly this
    sites greatest warrior and help to others. Hang in there man.
    Steve
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #9
    stevenl said:

    Peg
    Hondo,
    Wishing the best for you. I don't know if you have had a peg before, I'm sorry
    just can't remember. If not it is not a big deal, and in fact you can feed
    at night and really bolster your strength. Prayers as always, you are truly this
    sites greatest warrior and help to others. Hang in there man.
    Steve

    PEG
    Sorry to hear about the postponement of the test, and hope things get better.

    As you AND JOHN know, I have nothing but good to say about the PEG, based on my 15-month experience with it. Sweet and a few others talk about pump-like feedings, which is greek to me, but I remembe my Surgeon telling me the balloon type of feeding tube is his preferance for longtermers, as they are easy to replace. Does bypass the problem areas with H&N, and make ingestion a non-issue, though quality of food intake does get a bit compromised. Plenty of recipes on the board, though. And, yes, one does get used-to the apparatus, though would think it's easier for men to accept than women, as some of us men don't care as much what they look like as women typically do.

    Again, Tim, my Prayers that things get better for you real soon- you deserve the best.

    kcass
  • Hondo
    Hondo Member Posts: 6,636 Member
    #10
    Kent Cass said:

    PEG
    Sorry to hear about the postponement of the test, and hope things get better.

    As you AND JOHN know, I have nothing but good to say about the PEG, based on my 15-month experience with it. Sweet and a few others talk about pump-like feedings, which is greek to me, but I remembe my Surgeon telling me the balloon type of feeding tube is his preferance for longtermers, as they are easy to replace. Does bypass the problem areas with H&N, and make ingestion a non-issue, though quality of food intake does get a bit compromised. Plenty of recipes on the board, though. And, yes, one does get used-to the apparatus, though would think it's easier for men to accept than women, as some of us men don't care as much what they look like as women typically do.

    Again, Tim, my Prayers that things get better for you real soon- you deserve the best.

    kcass

    Thanks for the Infor

    I never had the PEG before as I went through both treatments with out one because my Oncla man did not believe in using them. But as time goes on and my mouth gets smaller and problem with aspiration gets worse I too believe that the PEG tube is the only way to go.

    Thanks again for the helpful info
    Hondo
  • jim and i
    jim and i Member Posts: 1,788 Member
    #11
    Tim,
    If you are aspirating I
    Tim,

    If you are aspirating I can't believe the doctors aren't convinced you need the PEG. Insurance I can understand, but the doctor? Jim uses the peg at night with a formula. He started with Jevity but had to change to Osmolite because of kidney problems from chemo. He maintained his weight through treatment even though he was under weight and has now gained about five pounds since treatment end. He has gained it all in his middle which makes him want to cut back on the amount. I keep telling him he will redistribute the weight when he cn walk and exercise (after the brain shunt). When you use the pump it is on a pole and the formula is in a bag like an IV bag. A tube runs to your PEG tube and the formula drips in slowly over time. It take about 9-10 hours for Jim to get in 2000 calories (6 cans). They also give you a backpack that you can put the pump and bag in if you want to feed in shifts or need to go someplace while it is pumping. The only adjustment Jim had to make in sleeping was using a wedge to elevate his upper body to prevent reflux. He eventually stopped using the wedge because by the end of the night it was off to the side and he didn't get reflux. Supplies and formula are delivered to our home once a month and medicare pays most of the cost so it helps with the food bill.

    I will be praying your doctors and the Insurance company consent soon so that your risk is lowered for aspiration. May you have a blessed day.

    Debbie
  • Hondo
    Hondo Member Posts: 6,636 Member
    #12
    jim and i said:

    Tim,
    If you are aspirating I
    Tim,

    If you are aspirating I can't believe the doctors aren't convinced you need the PEG. Insurance I can understand, but the doctor? Jim uses the peg at night with a formula. He started with Jevity but had to change to Osmolite because of kidney problems from chemo. He maintained his weight through treatment even though he was under weight and has now gained about five pounds since treatment end. He has gained it all in his middle which makes him want to cut back on the amount. I keep telling him he will redistribute the weight when he cn walk and exercise (after the brain shunt). When you use the pump it is on a pole and the formula is in a bag like an IV bag. A tube runs to your PEG tube and the formula drips in slowly over time. It take about 9-10 hours for Jim to get in 2000 calories (6 cans). They also give you a backpack that you can put the pump and bag in if you want to feed in shifts or need to go someplace while it is pumping. The only adjustment Jim had to make in sleeping was using a wedge to elevate his upper body to prevent reflux. He eventually stopped using the wedge because by the end of the night it was off to the side and he didn't get reflux. Supplies and formula are delivered to our home once a month and medicare pays most of the cost so it helps with the food bill.

    I will be praying your doctors and the Insurance company consent soon so that your risk is lowered for aspiration. May you have a blessed day.

    Debbie

    Hi Debbie

    Yes I been very unlucky when it comes to advice or help from my doctors. If I don’t find answers here on CSN I am lost, you would think that I am the only person with Cancer in Lafayette, as these guys don’t know much about after help for someone with cancer. The aspiration is getting a little better I just got to watch it when eating or drinking. Keeping you and Jim in prayer for the shunt, God bless and keep you both while in His Workshop

    Hondo

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