Chemo light - extra light...

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Kathryn_in_MN
Kathryn_in_MN Member Posts: 1,252 Member
in Colorectal Cancer #1
My infusor stopped working yesterday. I thought something was off - I am usually done early, but it seemed to be behind. A disconnect nurse called me last night to tell me the nurse assigned to me was sick, and he'd be coming out. I always recheck the amount left when they call me. I told him it seemed to be behind, and might not be ready at 9AM, so he should call first. Last night at midnight it didn't seem to have made any progress. This morning I called him at 7AM to say it hadn't infused anything since the 1/2 way mark.

He said he'd come right away. But I got another call saying he is running behind and won't be here till 9:30 due to icy roads. He'll check the lines and see if he can find a problem. If not he'll call the oncologist on call and ask what to do. He isn't sure he can disconnect me. If it isn't working, I'm not staying hooked up all weekend!

I am a little nervous about going from full dose FOLFIRI and Avastin, to only 1/2 dose of 5-FU. I know if I just got to the point of a clear scan, there is a big chance I still have a few cells lingering just waiting to multiply. We need to knock those suckers out to make sure I have nothing lurking. I planned to at least hit my 12tx this go around. The first 8 FOLFIRI and Avastin, and at least 4 more of 5-FU (with the next 3 getting Avastin). Since I am leaving in a week for vacation, I don't want to get another 1/2 dose on Monday, with a disconnect Tuesday or Wednesday? I want to feel well enough to pack and travel, and I think it will be tough if it is that close to chemo... I really don't know what they will want to do with me....

Has anyone else had this happen?

I DID check the little clamp, and it is open. No kinks in the line that I can find. Anything else I should look for?

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  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #2
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    Yep..............
    shut it down first.....hit stop.....then there should be a run button...don't be afraid of it...it won't do anything bad...or, find a 5 year old and let him/her work with it....they are fearless.....really i think shutting it down the try run should do it...its been a while but i use to start mine as well when it plugged ....buzz
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #3
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    Buzzard said:

    Yep..............
    shut it down first.....hit stop.....then there should be a run button...don't be afraid of it...it won't do anything bad...or, find a 5 year old and let him/her work with it....they are fearless.....really i think shutting it down the try run should do it...its been a while but i use to start mine as well when it plugged ....buzz

    I actually have an infusor - no batteries - no pump
    I have an infusor - no batteries. I always run fast - finished 3-8 hours early (usually about 3 hours early).

    I guess the amount left is a bit of an optical illusion - it seems like less goes at first starting with the big ball, and then it goes quicker at the end as it gets smaller. So I got 65-70% before it just quit going in. The nurse clamped it off and flushed my port (flushed with no issue). Then he connected me back up and asked the oncologist on call what to do. He wanted me to stay connected, but no longer than 4PM. So someone else has to come back out at 4.

    It is running again. I was feeling incredible for a chemo disconnect day. I even got my own food from the fridge and kitchen. Normally I couldn't go near the kitchen without vomiting on disconnect day! But after getting a drink and eating a banana, all of the sudden I was green again. My husband noticed right away - he thought I was going to throw up. I started feeling weaker and more nauseated, and my tongue started hurting more. So I knew the infusor was working again. Still I can't complain. I feel like crap, but I don't feel like death! I can do this! And I want to make sure I don't let up too early - get rid of any stray suckers hanging on. So I am glad I am getting a little more chemo in.

    The nurses are ok to disconnect as long as there is not more than 10% left - they do have to make notes of it. But anything over 10% they have to call in and have the doctor make the call on what to do. It still seems to be going slow - I'm not sure if it will be finished at 4 or not, but the oncologist was insistant that I not stay hooked up to this tonight.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #4
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    First disconnect nurse flushed my port and then it infused for a while. But then it quit again. The oncologist made it clear that he didn't want me hooked up again overnight, and to disconnect at 4PM.

    So the second nurse came out and disconnected at 4, with 20-25% still left in the bottle.

    Chemo still sucks, but only about 1/4 as much as usual. With no Irinotecan, no Avastin, and only 75-80% of the 5-FU, this isn't so bad. Nausea, diarrhea, mouth sores, and I'm really tired. But it is more on the level of having the flu - not feeling like I'm going to die or wishing I were dead.

    I can do this - it isn't so bad!
  • joy44
    joy44 Member Posts: 50
    #5
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    Kathryn_in_MN said:

    First disconnect nurse flushed my port and then it infused for a while. But then it quit again. The oncologist made it clear that he didn't want me hooked up again overnight, and to disconnect at 4PM.

    So the second nurse came out and disconnected at 4, with 20-25% still left in the bottle.

    Chemo still sucks, but only about 1/4 as much as usual. With no Irinotecan, no Avastin, and only 75-80% of the 5-FU, this isn't so bad. Nausea, diarrhea, mouth sores, and I'm really tired. But it is more on the level of having the flu - not feeling like I'm going to die or wishing I were dead.

    I can do this - it isn't so bad!

    BIg Smiles
    I am sending you Warm ((HUGS)) tonight and hope you have a good one !

    Always thinking of you!!

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