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  • in reply to: The doctor has pulled the plug #20905
    allicat859
    Participant

    Hi all,

    I want to express my gratitude to all of you wonderful caring people for being here. In all my fear and frustration through this terrible ordeal this site has been my refuge when I couldn’t get answers anywhere else.

    John and I talked to a hospice nurse yesterday. So far it has been a relief to know we not just hanging out there. John still hasn’t come to grips with the reality of it all. He still thinks he may get well enough to restart chemo. He is having confusion issues. His last bili was 28.7, two weeks ago it was 17.6.

    John is on whats called medicaid spend down. He has been on disability since January o7 and will not qualify for medicaire till January 09. Unfortunatly I don’t think we have that long. The hospice nurse told us that they have caseworkers that will take over his medicaid and we will never be billed for any service from them. This has given John and I much peace of mind in the financial area. John doesn’t want to leave me with huge medical bills.

    I must get to work but again Iwanted to thank all of you who have helped ease my mind and answer my questions on this long hard journey we’re all in together.

    Alice

    in reply to: The doctor has pulled the plug #20899
    allicat859
    Participant

    Marions,

    Thanks for the reply. John is very weak, his bili is 28.7 and he has lost 25 lbs. in two weeks, he is also experiencing shortness of breath and alot of clear flem. He sleeps most of the time. The doctor was telling us about hospice and John was falling asleep listening to him! His voice is very weak and thin sounding. His skin is tight to his bones and dry. I don’t think another opinion would be any different at this time. Besides that would mean MD Anderson and we can’t afford it. My boss’s mother just started hospice and she said it isn’t costing her anything but she has medicaire and a suppliment insurance so that would cover her. John’s afraid that hospice will come in and take over his disability income. That is what I am trying to find out to ease his mind.

    Alice

    in reply to: Any feedback are greatly appreciated. #20299
    allicat859
    Participant

    John,

    My husband(his name is John ) also receiced the hospice talk last week. He just turned 53 Saturday and asked for another choice. The doctor has given him a new treatment with 3 different chemos its a long shot and the doctor doesn’t give us much hope. At his blood work last week his bili was 17.6 so don’t let then tell you that no treatment is out there. Unfortunatly, it just isn’t all that effective in most cases. Your dad must weight the option and make a choice thars right for him. Any chemo takes it toll on the body and in some cases its a quality verses quanity choice. Is your father able to make his prefrences known? If so , in my opinion I would follow his wishes.

    If its any consolation we’re in the same sinking boat.

    Love , prayers, and best wishes.

    Alice

    in reply to: Hi, I am Lamia from the Washington D.C area #20572
    allicat859
    Participant

    Dear Lamia,

    I usually just read the posts but I feel compelled as a mother to write to you. I know its hard to see your mother go back home. But as a mother of two daughters I can assure you both your parents will want you to stay in school and complete your education. Eventhough they love you and would love to have you by their side its because they love you so much that, its just my opinion but i feel sure they will insist you stay in school. Your mother has so many concerns at this point if she thought you gave up your education and future to be with her it would just add to her sorrow and pain. Someday when you have children of your own you will understand. A mother will gladly give up anything for the good of her children. Visit as often as you can but I’m sure your morher wouldn’t want you to quit school. Please, ask her, she’ll tell you what her wishes are.

    Love and prayers to you and your mother and family.

    Alice

    in reply to: We’re about out of options #20506
    allicat859
    Participant

    Jeff,

    I think you are the most caring person I’ve run across in way too many years. I’ve read many posts and you are always there with kind words and sound advice. And all this while chasing your own cc deamon. John is determined to do anything and everything possible to live as long as he can. The idea of dying doesn’t bother him as much as leaving our two granddaughters and missing out on their growing up. Even though I understand his decission may not be the best I can’t bring myself to discourage his hope in any way. Could you please give me some idea of what to look for in the way of side effects so I can try to be on top of any problems as they arise?
    We’ve been together 33 years come the 10th of July. I don’t know how to live without him.

    Alice

    allicat859
    Participant

    Hi, just wanted to add our experiences with the medicaid spend down that they put you on for the first two years. You might think it pays for everything but it doesn’t. The patient has to qualify every three months. And the approval process usually takes another three months. So you automatically run three months late on all you doctor and hospital bills. In order to quallify your bills for a one month period must be three times what your household income is for that month. With our medical bills and our lack of income thankfully John has qualified for every quarter. Another potential problem is medicaid has limits on how often they will pay for a procedure and a limit on howoften they will pay for ceritan blood work. unfortunatly, John has to have blood work done once a week. Medicaid won’t pay for the last two months of last year. Also you must be vigilant about how the hospital processes the claims. If it is not processed properly medicaid will denie it. And if the billing department doesn’t resubmit within the alloted time it becomes your responsibilaty. There are many more loopholes we’ve run into but this is getting long winded. Best of luck to all.
    Alice

    in reply to: Orphan Drug Status for Trphendiol #19277
    allicat859
    Participant

    marions,
    I printed out the pages on triphendiol and we took it Johns doctor on Wednesday. He said he had never heard of it and kind of dismissed me. I sure would be interested in what some of your doctors have to say about it. And when they think it might be approved for use on cc.

    Alice

    in reply to: just got home from the hospital #19106
    allicat859
    Participant

    Thanks for the replys. They managed to stop all bleeding before we left the hospital. John has had three previous scopes to band off any varices. The doctors say this is something we must be vigalant about as it is possible to bleed out. They didn’t do a MRI or CT scan. He had a CT last month it didn’t show much change. However, John’s overall condition is deteriorating he has no energy,gets hungry but doesn’t eat much, moves like a 90 year old man(he’s 52), is passing very little urine, and his stomach is all swollen and hard. Also, he has severe stomach and intestinal cramping type pain especially at night. I’m wondering if it was such a good idea to send him home. We see the doctor Wednesday, it seems like a long time away.

    Alice

    in reply to: Experiences with back/limb pain #18739
    allicat859
    Participant

    Amilcar
    I’m glad someone else is asking about back pain. John has been having severe pain in his middle to lower back. Also pain and pressure in the liver area. He’s been taking 2 oxycodone every 4 hours. Unfortunatly the pain meds caused constipation which caused even worse pain. After a miserable couple of days we got back on track. The Dr. prescribed extended release oxycodone, seems to be doing the trick. But, John will sleep for 16 or more hours at a time and is weak and stumbles when he walks. Should I let him sleep or should I try to get him up and on the go. I want to do what’s best for him but I’m not sure. The Dr. just shakes his head when we tell him about the pain. I wish they would give us some idea whats causing the different pains. I just don’t think they are telling us everything. Its frustrating.
    I hope by compairing notes maybe we can help each other

    Alice

    in reply to: Time to introduce myself #18501
    allicat859
    Participant

    Thanks for the response. This is Johns second bout with jaundice. Last July he was in the hospital for a week with bilirubin counts as high as12. Normal is 1 to1.5. At the time there was some talk of stents but the doctors decided to try more chemo to shrink the tumor blocking the bile duct and it worked at the time. We are hoping it will work again. Johns cancer has also had mets to his left lung, lymph nodes, and peritineal wall. Jeff, do you have ant shotrness of breath or congestion in your lungs? Also, John is having terrible pain in his back. He’s been taking oxycodine, two every four hours. I know what you mean about a rollercoaster. One doctors visit is great and the next is bad news. One day John feels great and the next couple of days he’s flat out feeling miserable. How long have you all been fighting this cancer? It’s very difficult to get the doctors to be up front with you. Sometimes I don’t think they know exactly what to expect.
    Thanks again for your answers. I’m so full of questions I don’t really know where to start but this is a begining. My thoughts and prayers are with you also. Happy New Year to all!

Viewing 10 posts - 1 through 10 (of 10 total)