back from the doctors

pattynonews
pattynonews Member Posts: 176
edited March 2014 in Head and Neck Cancer #1
Well we are back from the doctors, we have decided to go back to using a conventional drug, until a new trial drug . We will start on Spet 13th, He has lost some more weight but that was because he was on the antibotic for his port and they advised us to not use the proten poweder, but now the antibotic are done I can start adding the protein powder back to the isosource, which means I can get 1350 each feeding and if I do this 5 times a day that is over 5000 calories aday, We also decides to use a pik line instead of putting a port in maybe his body won't reject it like the port, and they are going to change his peg tube, it has been a year, I think it is time for a fresh one, We have never had any problems with this one but you can see the tube is waring, and we are going to wean him off the steroid, hopefully his little mood swings will change a little, Someday's I just want to knock him in to next year, but the good news is the cancer did not spread as much as the doctors in the hospital told us, so that is good news that even though he has not been on no treatment for a month in half, so now the goal is to get the weight on him and get his moods under control, and maybe I need to learn how to deal with this life called cancer, It is so hard some days, But Im just going to keep going forward that is all we can do,

Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #2
    Misery
    I may be wrong about this, but if you are loading someone up with more than 5,000 calories of protein a day as it sounds like you are doing, you are apt to be in the process of causing serious problems for his kidneys.

    Typical daily caloric intake (with a number of variables, to be sure) is between 1,500 and 2,500 calories. A professional athlete, a serious amateur athlete, will exceed that and get up into the 5,000 - 7,000 range, perhaps, but even then, it is not entirely protein, which would likely nuke his/her kidneys, and those folks are MONITORED DAILY BY A PROFESSIONAL NUTRITIONIST AND ARE NOT SEDENTARY.

    I can no longer recall the type of tube your 'man' has, if indeed you ever specified. If it is like mine, however, the likelihood of getting honey down it is slim to none and ice
    cream had better be melted down to milk and sugar (personally, I would never consider it, but then, he may have a different tube).

    My feeling, based on a comparison of your posts here and especially between here and elsewhere in the boards, where the facts change at least marginally, is that things are not adding up.

    I am hopeful that you are simply miscommunicating with 'Jack's' doctors with respect to the calories and other issues, and that you are mis-typing from one board to another. If so, it is time to start taking pen and paper with you to every meeting with doctors. List your questions, record the answers you receive, come up with new questions based on those answers. (It is also time to make sure your posts compare favorably from one board to another.)

    The idea that you would be trying to negotiate someone's pain medications (a previous post) while apparently incorrectly recalling these other very important details is straight out of a Stephen King novel, if such is the case.


    Joe
  • carolinagirl67
    carolinagirl67 Member Posts: 153
    #3
    A little Good news
    Hey Patty,

    I'm glad you got a little good news. That will help you get through each day. I know it is such a rollercoaster. That is why you just can look that far ahead. I try to enjoy each moment with my husband. Even when we are sitting in the DR's office, we talk about things we used to do and some of our plans for the future. It helps take your mind off what you are going through. I am praying for Jack. Not sure about the calorie thing but I am sure you have talked to a nutritionist. I know they talked to us when we had our PEG put in and told us exactly how much to feed each day. Remember, take care of yourself too. You can't be there emotionally for Jack if you don't re-energize your self. I will keep checking on you and Jack.

    Peace be with you.
    Donna
  • pattynonews
    pattynonews Member Posts: 176
    #4
    soccerfreaks said:

    Misery
    I may be wrong about this, but if you are loading someone up with more than 5,000 calories of protein a day as it sounds like you are doing, you are apt to be in the process of causing serious problems for his kidneys.

    Typical daily caloric intake (with a number of variables, to be sure) is between 1,500 and 2,500 calories. A professional athlete, a serious amateur athlete, will exceed that and get up into the 5,000 - 7,000 range, perhaps, but even then, it is not entirely protein, which would likely nuke his/her kidneys, and those folks are MONITORED DAILY BY A PROFESSIONAL NUTRITIONIST AND ARE NOT SEDENTARY.

    I can no longer recall the type of tube your 'man' has, if indeed you ever specified. If it is like mine, however, the likelihood of getting honey down it is slim to none and ice
    cream had better be melted down to milk and sugar (personally, I would never consider it, but then, he may have a different tube).

    My feeling, based on a comparison of your posts here and especially between here and elsewhere in the boards, where the facts change at least marginally, is that things are not adding up.

    I am hopeful that you are simply miscommunicating with 'Jack's' doctors with respect to the calories and other issues, and that you are mis-typing from one board to another. If so, it is time to start taking pen and paper with you to every meeting with doctors. List your questions, record the answers you receive, come up with new questions based on those answers. (It is also time to make sure your posts compare favorably from one board to another.)

    The idea that you would be trying to negotiate someone's pain medications (a previous post) while apparently incorrectly recalling these other very important details is straight out of a Stephen King novel, if such is the case.


    Joe

    i am signing off this page due to this guy,
    First of all yea I feed Jack that many calories because his metabolism is very high, and I am not miscommunicatng with his docotrs, he has had his feeding tube a year and not once has it been infected , clog no issues , As for his kidney function they are totally normal how dare you write and judge someone who is doing there best to take care of some who is dying, your **** should be kicked off this site and I am going to make a formal complaint about you, We go to get support not to hear your babble, and matter a fact becasue of you I have decided I don't think I want to be associated with this page, And what the hell do you mean my post are not adding up here are the facts you idiot,

    1 My man is dying,
    2 We are doing the best to keep the weight on him and his dietician advised us 1500 cal to 2500 calories a day is not enough for Jack to maintain his weight and they advised us to add honey, ice cream anything liquid that will give him extra carbo's to gain weigh
    3. And the pain medication the doctors are guided us on how to handle in , jack has a tumor the size of a orange on the side in his throat, the pain can barely swallow water, and yea he is not perfect and he had a past issue with drugs, so I was just asking question,
    4. Lucky for you , you are a survivor of cancer my husband is termianl, how dare you judge and write what you wrote,
    5. I will make sure I will never ask another question on this site,
    6. There is this lovely lady called Karma so before you go writing negative stuff to me on this site, while my man is dying, you better be careful because Karma will find you and you might be terminal one day,
  • victor53
    victor53 Member Posts: 97
    #5
    pattynonews said:

    i am signing off this page due to this guy,
    First of all yea I feed Jack that many calories because his metabolism is very high, and I am not miscommunicatng with his docotrs, he has had his feeding tube a year and not once has it been infected , clog no issues , As for his kidney function they are totally normal how dare you write and judge someone who is doing there best to take care of some who is dying, your **** should be kicked off this site and I am going to make a formal complaint about you, We go to get support not to hear your babble, and matter a fact becasue of you I have decided I don't think I want to be associated with this page, And what the hell do you mean my post are not adding up here are the facts you idiot,

    1 My man is dying,
    2 We are doing the best to keep the weight on him and his dietician advised us 1500 cal to 2500 calories a day is not enough for Jack to maintain his weight and they advised us to add honey, ice cream anything liquid that will give him extra carbo's to gain weigh
    3. And the pain medication the doctors are guided us on how to handle in , jack has a tumor the size of a orange on the side in his throat, the pain can barely swallow water, and yea he is not perfect and he had a past issue with drugs, so I was just asking question,
    4. Lucky for you , you are a survivor of cancer my husband is termianl, how dare you judge and write what you wrote,
    5. I will make sure I will never ask another question on this site,
    6. There is this lovely lady called Karma so before you go writing negative stuff to me on this site, while my man is dying, you better be careful because Karma will find you and you might be terminal one day,

    im sorry
    im sorry for your situation. I am about one year out of treatment for stage 4 tonsil cancer.
    I have to say that soccerfreaks literally was and is one of the people who has helped and inspired me the most of any online.
    Words and thoughts can be misunderstood so easily went they are in print.
    I come here to read posts almost everyday i dont write very much because idont have very good comunication skills and i cant type or spell.
    I do post if i think i can help but im scared to give advice as i dont want to give the wrong advice .
    So many times i want to reply but dont.
    But i have to reply that i would be truly be sad if i didnt have soccerfreaks posts to read.
    And truly my heart goes out to you and admires your fighting spirt.
  • newbride
    newbride Member Posts: 142
    #6
    victor53 said:

    im sorry
    im sorry for your situation. I am about one year out of treatment for stage 4 tonsil cancer.
    I have to say that soccerfreaks literally was and is one of the people who has helped and inspired me the most of any online.
    Words and thoughts can be misunderstood so easily went they are in print.
    I come here to read posts almost everyday i dont write very much because idont have very good comunication skills and i cant type or spell.
    I do post if i think i can help but im scared to give advice as i dont want to give the wrong advice .
    So many times i want to reply but dont.
    But i have to reply that i would be truly be sad if i didnt have soccerfreaks posts to read.
    And truly my heart goes out to you and admires your fighting spirt.

    Victor
    I so agree with you about miscommunication - I hate message boards and email but sometimes that is all we have available. I can't tell you how many times I have read something and took offense to it and then when confronted the person learned that is not what they had meant at all, and vice versa with my communication as well.

    That being said -- I don't think anyone here is trying to be mean spirtied nor or they trying to be a doctor or "give advice" so to speak. I think we all usually respond from our own experiences as well as our point of view on interpretation.

    Also, soccerfreaks first line in response to Pattynonew's post was in fact I MAY BE WRONG so I don't believe he was actually telling her "what to do" as much as more of "in my experience".

    Victor - while you don't post often - I think you hit it right on target here -- communication and interpretation is everything and not every one is good at both.

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