So their really is a Santa Claus

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connieprice1
connieprice1 Member Posts: 300 Member
edited March 2014 in Head and Neck Cancer #1
My wife Connie just got out of the hospital after 8 days. She started out with chronic diarrhea and then progressed to low platelet count. Of course these symtoms started from bad reaction to chemotherapy. The research team that runs the clinical trial that Connie is a patient never even gave her a call to show their concern over her condition. She developed Thrombocytopenia which is a side effect of Chemo but can be fatal. This made my wife and I wonder if she is considered a person or just #356741. They also kept the pump with 5FU pumping another 56 hrs. although they knew that these conditions are side effects of 5FU. This is starting to make me wonder whether I should have blind trust in the clinical trial care givers. I read tonight that patients can overdose on 5FU and this condition is usually fatal but that their is an anedote available in emergencies but not yet approved by FDA. Maybe I am just over reacting but I want to make sure the treatments don't do irrepairable damage or cause death. Either way today being Christmas I was overjoyed bringing her home and her discharge was truly a gift from God. Caregiving Husband, Homer Price

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  • adventurebob
    adventurebob Member Posts: 691
    #2
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    Good news
    That's good news! No place like home for the holidays. Merry Christmas Homer, to you and your wife!

    Bob
  • stevenl
    stevenl Member Posts: 587
    #3
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    adventurebob said:

    Good news
    That's good news! No place like home for the holidays. Merry Christmas Homer, to you and your wife!

    Bob

    That's Great
    Connie and Homer,

    What better present could you get on Christmas day? Hoping for continued success in the battle.

    Best,
    Steve
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
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    Home for the Holidays
    That in itself I'm sure is good medicine....

    If they had the pump on her while in the hospital, I'm sure they had her under close observation. You mentioned low platlet counts. I know mine started at 202 an at the low, I believe it dropped to 92.

    The gave me an injection of Neulasta the following week when I was on the three week cycles of chemo. Nine weeks, three injections, week 2, 5 and 8....Neulasta feels like you have a bad flu, bones hurt and ache. But it helps to rejuivinate and produce blood cells in the bone marrow.

    Not to dismiss your thoughts and opinions, but any and all of the chemo drugs are potentially fatal.

    The one thing that you have got to have and helps in remaining positive, is you relationship with your doctors. If you don't have faith and confidense in them, you might want to seek other options or care.

    Very glad your wife is home, and hopefully they'll get her reactions under control.

    Best and Merry Christmas
    John
  • Hal61
    Hal61 Member Posts: 655
    #5
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    Glad Connie's out
    Hi Homer and Connie, I've only spent a couple of short stretches in the hospital in the last year, and was so happy to be home each time, so I know you're both feeling more comortable. The hospital is no place to get rest. Sorry the clinical trial staff aren't a little more thoughtful in their bedside manner. I've been in standard treatment and care for chemo/rads/neck dissection, and my ENT is on a short leash right now. I feel like I'm kind of a quick stop between other patients for him sometimes, but it sounds like your backing up your trust with your own research and questions. Best of luck for both of you.

    Hal
  • Hondo
    Hondo Member Posts: 6,636 Member
    #6
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    Santa Claus
    The only things better is my wife caregiver; just don’t know how I would have made it without her. Glad you got to take your wife home for the holidays. Take care my friend

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