FOLFIRI w/Avastin #2 - harder than #1 and a comedy of errors

Kathryn_in_MN
Kathryn_in_MN Member Posts: 1,252 Member
edited March 2014 in Colorectal Cancer #1
This round of FOLFIRI w/Avastin is a lot harder than the first one. And it has been a comedy of errors all along.

On Thursday at infusion I started having stomach pains and just didn't feel right - head felt like it was swelling and could explode - dizzy - tons of saliva in my mouth making me very nauseated. So the Irinotecan was shut off, and I was switched to saline while they gave me Atropine. After a while the chemo nurse turned the Irinotecan back on. She checked on me in a bit, and I said I still felt the same after restarting - I was ok. Then the lady next to me mentioned that I had an IV line dripping all over the floor. No wonder nothing changed when they restarted me - my Irinotecan was dripping on the floor - not into me!

Friday I just couldn't stand the excess saliva in my mouth. I'd forgotten about this issue I had during my pregnancies. Now I remember how awful that was. Swallowing, swallowing, causing nausea and gas - and if you dare go to sleep, drooling all over your pillow. YUCK! So I called the oncologist. They called in a script for atropine eye drops. They use these in hospice a lot. I was warned not to overuse them, as they could cause cardiac arrest. Yikes! It seemed really weird to put drops in my eyes to control secretions and stomach pain, but it did help. I am SO glad I started with just one drop in one eye. My vision got really blurry. I wondered if I was having an allergic reaction or something. Well here it is Sunday afternoon, and I'm still having trouble. The drop dilated my eye, which is STILL dilated! The disconnect nurse on Saturday asked me what was wrong with my eye. After I told her about the drops she told me that atropine was used in the past by eye doctors to dilate pupils. I look like I have one blue eye and one brown... It is driving me mad. It is messing with my eyesight and that doesn't help with the nausea at all.

Saturday disconnect time came, but my box of supplies had not. My infusor was done early again - it was empty by 7AM and was supposed to be done at 11:30AM. I called home health and they had the nurse come at 9:30 instead. In my old boxes of supplies I had extra saline, but no heparin. The nurse only had one small heparin - not the amount needed for the disconnect flush. So she removed the 5-FU, flushed with saline, then flushed with the little heparin, but left me accessed. The pharmacy called in an emergency delivery of heparin so my husband could finish my disconnect. When no one had arrived 4 hours later I called them back. They didn't get an answer as to why the courier hadn't shown up yet. He came about 20 minutes later.

First cycle this was way easier than FOLFOX for me. This time it sucks more than the first one, but still isn't quite as bad as FOLFOX. Lots of nausea and excess saliva (but I am NOT putting another eyedrop in). Stomach pain on and off, but I can deal with it. My scalp hurt yesterday, but itches today - hair loss rate is picking up again. I hope the burning and itching stops when the hair is gone. The fatigue is heavy today. I'm due for my first Neulasta in an hour. I hope it is no worse than Neupogen.

I can deal with all this knowing my CEA is dropping on this cocktail. Chemo sucks, but it is helping me stick around longer.

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #3
    Kathryn
    I think you need to write a book! I am so sorry you had the complications you did. It's a good thing you had an alert roomate, with the irenotecan going all over the floor. Last Christmas holidays I needed hydration, so they gave me saline solution every day, at home for a few hours. One of the nurses suggested my husband could do the disconnects. My husband did it once + then said never again; it made him too nervous. This guy has an MSc + thought of going into medicine at one time. I know some people do it themselves, but I don't know if I could. I hope you recuperate nicely + that #3 is much better.
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #4
    AnneCan said:

    Kathryn
    I think you need to write a book! I am so sorry you had the complications you did. It's a good thing you had an alert roomate, with the irenotecan going all over the floor. Last Christmas holidays I needed hydration, so they gave me saline solution every day, at home for a few hours. One of the nurses suggested my husband could do the disconnects. My husband did it once + then said never again; it made him too nervous. This guy has an MSc + thought of going into medicine at one time. I know some people do it themselves, but I don't know if I could. I hope you recuperate nicely + that #3 is much better.

    Ok kath ,you are great you can with everything !
    think that this sh,,,,is killing the beast hang in there it will go better in a few days!
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    #5
    unknown said:

    This comment has been removed by the Moderator

    Disconnect
    I disconnected by myself ( with a tad of help from hubby) every time except the first time.First time they showed me how and gave me step by step printed instructions.They said that so many people live hours away and that it is helpful for them to be able to do this for themselves.

    I lived only 5 minutes away but hey, I didn't like to drive with the pump connected and seat belt pressing on all of it....so, I was eager to learn and if I can do it anyone can:)

    Kathryn, I hope the next round will be much easier for you.

    -Pat
  • chicoturner
    chicoturner Member Posts: 282
    #6
    You are so brave! I had a
    You are so brave! I had a nurse come to my house to disconnect me every time and although I got used to it, I was happy to see her! I am sorry you had such a time of it all~ I am happy you CEA is dropping! Best to you. Jean

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