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Thread: I love/hate RTX

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    Default I love/hate RTX

    I had my second infusion on the 17th. It wasn't a pleasant experience this time around. The first infusion was a breeze. I sat there and chatted with everyone and didn't feel sick until later in the day. This time wouldn't be so fabulous.
    First of all, they told me I wouldn't have the short infusion because of my bad reactions so this would be as long. O-K. I sat down, got comfortable, and then winced as the nurse fought to get a vein in my left arm. I suggested my right arm instead. That also was a bit of a struggle. OK, ouch, now we are in. I got IV Benadryl first so they could be prepared. Instantly, I was loopy and got snuggled into my chair to get through this day. Medicine was started and the nurses all wandered off to tend to other patients. Hmm ... pain.
    Dan asked what was wrong and I said my arm kind of hurt.
    More pain. Ow. This doesn't feel right. I cringed and asked him to get the nurse. I lifted my arm and it was turning red. I don't think it's supposed to do that. They checked the IV, the nurse who put it in swears she had good blood return so it was placed right. Her partner got a warm blanket and wrapped my arm. The pain seemed to recede a little then. And, then it came back ... MORE. My arm was once again, very red. Wrapped again in another warm blanket ... it seemed to be better.
    That kept going the whole time. I think the needle was sticking out of the vein on the inside but who am I to say, right? After the struggle she had to make it go ... I think it went all the way through.
    What followed was, quite simply, minor hell. I was dizzy, nauseous, weak, shaky all day Friday, all day Saturday, all day Sunday. Sunday night I had such pain in my head and neck that I almost went to the Emergency Room. I was dizzy and weak Monday. Tuesday, I tried to run some errands and found myself so dizzy I ran to a bathroom in a grocery store and lost my lunch. I emailed my doctor and said that I was going back to work the next day but had updated her on my symptoms. She wasn't comfortable with me going back to work so I stayed home yesterday as well. Last night, the strange headache was coming on again when I went to bed.
    Today ... I feel about 65% of normal. My vision still seems off, and I am weak. My head hurts today. It's just not going to be a good day. But, baby steps back to normal.
    I don't have to go through that for six months, at least. Hopefully, things will go well and I won't have to do it ever again. Well, not any time soon at least. I mean, if I don't go back to feeling terrible. I don't know how this all works.
    I'm just hopeful that it works, and I don't have any life altering side effects. You know the ones, those rare ones, ... let's keep it away.
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

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    If that's minor hell, I don't want to think about major hell.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Compared to what most of you went through at diagnosis ... this was a minor hell. But, it was pretty freaking awful. However, if I come out of this feeling better than I have, I will endure it ALL over again.
    I'm pretty certain it was because of the IV being bad.
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

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    I am sorry for your pains, Nikki
    The nurse put the IV in the wrong place. If it is aching like that, always ask her to take it out and try again in another place.
    As for the weakness and pains in the days after, I have pains in the body, like being after car accident. But not much headache specifically and not so much nausea. Is it possible that you needed to drink more fluids and was dehydrated those days ?
    Rest is almost a must after rtx. Just imagine what tough battle is going in there right now.
    I am glad that you are feeling better already
    I had untill today more then 8 IV (not sure exactly, once I got only one) and the more I get it, the easier it becomes. So you can hope that the worst is over. Now let the golden fluid beat the beast.
    Last edited by Alysia; 06-24-2016 at 01:16 AM. Reason: Spelling
    Alysia
    dx 2008


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    Quote Originally Posted by NikkiNicole View Post
    Compared to what most of you went through at diagnosis ... this was a minor hell. But, it was pretty freaking awful. However, if I come out of this feeling better than I have, I will endure it ALL over again.
    I'm pretty certain it was because of the IV being bad.
    I hope you're right about the IV. Be sure to be well-hydrated next time.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    i have had lots of IV's and don't remember anything as uncomfortable as you describe. I hope it was a freak accident that will not be repeated again. I think your first one is more typical and usual reaction to any IV.
    Last edited by drz; 06-24-2016 at 11:34 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    So did the nurses ever confirm that the IV missed the vein or went through the vein?

    I believe I had that happen once upon a time, but can't recall. I was half out of it at the time. I recall a bubble forming under the skin, but it would have just been saline and some minor drug.

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    They looked at it but determined it was fine. I don't know, it could be that I just didn't handle this one very well. I am a little dizzy today and my words have been quite funky. I'm tired. But, I start work at 5am so that involves me getting up at 3:30 in the morning. After being off a week and sleeping as much and as often as I wanted, this going to bed at 8 and getting up at 3:30 is a very hard adjustment. I also have the weirdest, most aggravating headache ever. It started yesterday when I was on my way home and is still here, not responding to my 800mg of ibuprofen.
    Oh well.
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

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    HI Nikki, sorry to hear your most recent RTX infusion didn't go well.
    I have lots of problems with cannulas and my veins. It usually takes them a few attempts in different areas to get one working. Then approximately half the time they fail at some point during the infusion. Before they fail they become very painful, just like you described. But at the hospital I go to, the alarm on the "drip machine" usually activates before the pain is too bad and they attempt to find another vein. I have had a cannula go into a vein, through the other side of the vein and straight through my skin, exiting my body! I've also had cannulas miss veins without the nurse knowing and once the infusion starts a large lump appears where the saline solution builds up under my skin.
    So, yeah, I've had plenty of cannula issues, BUT the fact that your arm went red suggests that it may have been a reaction to the RTX, which is more of a concern.
    The fact that you have been unwell after the infusion for more then 48 hours would tell me that you're not reacting well to RTX or you picked up an infection/virus almost immediately after receiving RTX (this happened to me on my last infusion).
    If you are due another infusion soon, make sure that you are clear of any possible infection or virus first.
    Diagnosed April 1995

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    I don't have another infusion scheduled for at least 6 months. I am crossing my fingers that it all goes well from here on out.
    I got two very large doses otherwise it would have been broken down into 4 or 6 doses. I'm willing to suffer a bit for a longer period of happiness!!
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

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