Got my date and cocktail...

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aluckylady
aluckylady Member Posts: 16
edited March 2014 in Colorectal Cancer #1
Got THE call today.
At first the nurse just blurted out dates to me and times and was about to hang up.
So, I made her stop, wait for me to open a notepad and start over.
This is my info..

Wednesday 3/18 8am...I go in for 4-5 hours..they fill my pack and I go home.
Thursday I return for 2 hours...they refill my pack.
Friday I come in for 30 mins or so and they remove the pack.

Wait a week and start over.

This is the medications she said I will be given
Avastin
Leucovorin
Oxaliplatin
5-fu florescil

She also told me I can bring my laptop, books, headphones...anything I want to pass the time.

I looked up the different meds and its all greek to me. Really just made me more anxious :(

Any input you all have would be greatly appreciated...be it on the meds...things to do before hand, whatever.
«1

Comments

  • angelsbaby
    angelsbaby Member Posts: 1,165 Member
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    Getting started
    There are all kinds of different chemo meds but this is yours and your journey begins. good luck always asks questions and tell them any side effects no matter how little. My husband took my I-pod or just slept during chemo. I pray that the chemo kills all the cancer. now the oxaliplatin you will have to stay away from cold stuff. My husband had that medication along with others he had side effects from them all. but there is always meds for the side effects too. But once you start chemo you become a pro after time . good luck i will b e thinking of you

    michelle
  • Buzzard
    Buzzard Member Posts: 3,043 Member
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    Getting started
    There are all kinds of different chemo meds but this is yours and your journey begins. good luck always asks questions and tell them any side effects no matter how little. My husband took my I-pod or just slept during chemo. I pray that the chemo kills all the cancer. now the oxaliplatin you will have to stay away from cold stuff. My husband had that medication along with others he had side effects from them all. but there is always meds for the side effects too. But once you start chemo you become a pro after time . good luck i will b e thinking of you

    michelle

    a lucky lady......
    Hopefully you have insurance that will cover a lot of expense. The nausea meds will be expensive but well worth the co pay...The oxiliplatin, well let me just spill it out to you in order......

    Look for 4 hrs the first day, 3 hours the 2nd day, and about 20 minutes the 3rd day time spent.....

    Avastin.......helps to stop blood flow to the tumor to try and prevent the spread and growth...
    Oxiliplatin....chemo used mainly for colorectal cancer issues ...does a great job but some have pretty rough side effects from it, some don't...mainly it will be cold sensitivity and tingling of the toes fingers lips etc. It is caused by nerve damage which if not watched can be permanent...I had to stop Oxil at 10 treatments because the tingling was getting to be almost numbing but it is getting better now...The oxiliplatin also was the reason for my high degree of nausea. When they took me off for the last 2 treatments without the Oxil, within 3 weeks I can now drink cold liquids when before 55* was the max temp I could tolerate. You see as you go what you can stand.
    Normally your first hour of treatment is nausea meds but with the oxil you will probably needs extra nausea meds from the Rx...Anything you need ask for it from your Oncologist or his practioner, thats what they are there for...do not suffer, they have meds for everything, use them if you need them.
    Leucovorin....this is an enhancer of either the 5fu and/or the oxiliplatin....it keeps it in your system longer where it can do the most work for you...
    The 5fu will be in a fanny pack delivered via a needle inserted into your port(which you won't notice) and fed through a vein into your heart and pumped all over your system. It will remain with you(the fanny pack) for 3 days and the 3rd day being when you get the needle removed from the port and they keep the fanny pack to refill and for you on your next visit. It is kind of cumbersome trying to sleep with the fanny pack but I always let all the tubing out and set the bag on it and when you roll in your sleep it will roll with you its tougher than you think....if on the 3rd day it starts to beep telling you its out you can if you want touch "pause/run" on the touchpad and then hit "Off" and it will turn off the pump, it won't hurt anything either way.
    The main thing is stay off the internet looking at cancer sites, they will scare you to death. They are way behind times and this is the only place beside your Dr office that you will need for info. Someone in here will have an answer for you about everything, thats one thing we do in here is tell you the truth. We need the truth to survive so you get it in here along with consolation and comfort. Vent if you want, cry in here if you want, thats what we are here for, to make it as easy for you as it can be...........God Bless you sweetheart...He already has...He brought you to us...... :-)
  • VickiCO
    VickiCO Member Posts: 917
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    Good Luck to you...
    Buzzard covered everything. I just want to add my good thoughts and prayers are with you.

    I always took a puzzle book with me, but I am very social and ended up finding a chemo-mate to visit with each time.

    Many hugs, Vicki
  • FAPMom47
    FAPMom47 Member Posts: 68
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    Prayers
    I think the hardest part is waiting and wondering. Just have faith it will be alright. I was terrified my first time. It got to be a normal thing and I had faith that GOD would help me through it. I will be praying for you and I am going to put the whole network on our prayer list at church, Sunday.

    *GOD BLESS*
    *Jackie*
  • daydreamer110761
    daydreamer110761 Member Posts: 487 Member
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    FAPMom47 said:

    Prayers
    I think the hardest part is waiting and wondering. Just have faith it will be alright. I was terrified my first time. It got to be a normal thing and I had faith that GOD would help me through it. I will be praying for you and I am going to put the whole network on our prayer list at church, Sunday.

    *GOD BLESS*
    *Jackie*

    Not sure where u live
    But bring your gloves. When you leave, depending on the temps your hands will tingle, and the tingling seems to increase with each treatment (I'm on 7). I have the same treatment, minus Avastin, and got a touch of everything, but nothing I can't live with.

    Like Jackie said, the hardest thing in the beginning is the waiting and not knowing.
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
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    FAPMom47 said:

    Prayers
    I think the hardest part is waiting and wondering. Just have faith it will be alright. I was terrified my first time. It got to be a normal thing and I had faith that GOD would help me through it. I will be praying for you and I am going to put the whole network on our prayer list at church, Sunday.

    *GOD BLESS*
    *Jackie*

    praying
    for you too,you will probably be right behind me in treatments i go for #2 on march24 but i just got unhooked today from #1.you will do fine Godbless....johnnybegood
  • maglets
    maglets Member Posts: 2,576 Member
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    praying
    for you too,you will probably be right behind me in treatments i go for #2 on march24 but i just got unhooked today from #1.you will do fine Godbless....johnnybegood

    getting started
    so much good advice here I won't try to add.....but I do know that getting started is the worst. Honestly once you get going you can deal!!!!

    The unknown....thinking.....can I do this?

    Yes you can !!!!


    Best hugs
    Mags
  • kimby
    kimby Member Posts: 797
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    Folfox
    The cocktail you will be on is commonly called fulfox w/Avastin. It is an acronym for the drugs used. You are going to be on the most common (and effective) cocktail for where you are. Buzzard did an awesome job describing everything in detail. Just know that we are thinking of you and are all here for you. Good luck - you can do this!

    Kimby
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    praying
    I know it must be scary, but this is the beginning of your healing! I'll be praying for you.

    *hugs*
    Gail
  • lisa42
    lisa42 Member Posts: 3,625 Member
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    covered it
    Hi,

    I think Buzzard just about covered everything. Don't remember if he mentioned Emend (anti nausea). This works very well & it's definitely important to have good anti nausea drugs. Emend comes in a 3 pill pack- you take about an hour before chemo, then the next two days at the same time. If your insurance doesn't cover it, ask at your chemo/oncology office if they have any. I know sometimes people who get it covered by insurance and end up with extra will donate their leftovers for people who don't get it paid for (it's quite expensive).
    The over sensitivity to cold from the oxaliplatin was the worst thing for me. Don't try to eat or drink anything cooler than lukewarm or it can actually cause pain (like jagged glass going down my throat, in my experience). If you forget, you will be quickly reminded!
    As Buzzard also said, don't read or listen to any internet survival statistics. They're outdated! To be a statistic, the information has to be based on people who were diagnosed and treated at least five yrs ago, which was before they had some of the newer treatments that we have available to us!

    I'll be thinking of you and praying for everything to go well. Here on this message board, we can all relate and know what you're going through. Our experiences are all similar, but people's side effects, symptoms, and experiences are also slightly different. There are a lot of people here willing to share their experiences, insights, and are definitely good at giving moral support!

    Take care,
    Lisa
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    Chemo days
    Buzzard did a great job of explaining the nitty gritty. The only new thing to me was to hear that some of you with the fanny packs had some kind of mechanism that beeped when it was empty? I never had that! I feel left out now :D Although, when I was in the hospital my pain pump would beep whenever it felt I had moved my arm/needle. I never wanted to hear another beep again, so I guess I'm lucky I didn't have a beeping fanny pack.

    I had the same cocktail as you, minus the Avastin. My protocol was a bit different too. I would go in to the Cancer Agency for 3 hours on a Monday. That's when they would give me the Leucorvin and the Oxipalatin... then they would give me a booster of 5FU, before they would hook me up to my 5FU bottle (that looked like a chubby baby bottle). I would put the bottle in a water bottle pocket, attached to a belt (I only had one belt at that time and trust me, it was one coyote-ugly 3-colour striped belt!). I would wear this baby bottle attached to the oh-so-ugly belt for 48 hours... then a home care nurse would come to the apartment and unhook me and flush out my port. Hahaha... the home care nurses are fabulous!! In the summer when I was on treatment, I was volunteering at our outdoor theatre, so was down at the park every day... so the nurse said, if I wanted her to come to the park, she could unhook me there and flush out my port. She loved coming to our Theatre Under The Stars every summer so thought this would be great!! Hahahaha! I almost took her up on that... but in the end, always had her come to the apartment because after she would unhook me and leave, I could have a shower without the nuisance of the bottle :)

    Now... as for when you go to get your infusions. Take a good book (or knitting or crocheting or anything like that to keep your hands busy and something for your mind to focus on). If someone is going with you, then bring along a game or cards or something to keep the two of you active. When my friend Steve would go with me, we would take this game called Blokus (a tile game). The one we brought was for 2 players... but others in the room were really interested in the game, so the next times we brought the bigger game for 4 players. Hahaha... the nurses knew when Cheryl and Steve were coming, one had to rearrange the chemo furniture so other patients could play :)

    You are going to be just fine!! Oh, and something that no one has mentioned for awhile... go out and buy yourself a personal little notebook. One that will fit in your purse or bag. Trust me... this will become a trusted friend!! In this notebook you can write questions as they come up, or information that is given to you. Sometimes you will be given papers, or printouts of your blood work... fold them up and put them in your notebook. If you are like some of us and get the infamous "Chemo Brain" where your memory gets a little foggy, the notebook becomes a godsend because you really won't remember something that was told to you. Write down anything you think you will want to know later :)

    Things will go great now, just you wait and see!! :)

    Hugggggs,

    Cheryl
  • msccolon
    msccolon Member Posts: 1,917 Member
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    Chemo days
    Buzzard did a great job of explaining the nitty gritty. The only new thing to me was to hear that some of you with the fanny packs had some kind of mechanism that beeped when it was empty? I never had that! I feel left out now :D Although, when I was in the hospital my pain pump would beep whenever it felt I had moved my arm/needle. I never wanted to hear another beep again, so I guess I'm lucky I didn't have a beeping fanny pack.

    I had the same cocktail as you, minus the Avastin. My protocol was a bit different too. I would go in to the Cancer Agency for 3 hours on a Monday. That's when they would give me the Leucorvin and the Oxipalatin... then they would give me a booster of 5FU, before they would hook me up to my 5FU bottle (that looked like a chubby baby bottle). I would put the bottle in a water bottle pocket, attached to a belt (I only had one belt at that time and trust me, it was one coyote-ugly 3-colour striped belt!). I would wear this baby bottle attached to the oh-so-ugly belt for 48 hours... then a home care nurse would come to the apartment and unhook me and flush out my port. Hahaha... the home care nurses are fabulous!! In the summer when I was on treatment, I was volunteering at our outdoor theatre, so was down at the park every day... so the nurse said, if I wanted her to come to the park, she could unhook me there and flush out my port. She loved coming to our Theatre Under The Stars every summer so thought this would be great!! Hahahaha! I almost took her up on that... but in the end, always had her come to the apartment because after she would unhook me and leave, I could have a shower without the nuisance of the bottle :)

    Now... as for when you go to get your infusions. Take a good book (or knitting or crocheting or anything like that to keep your hands busy and something for your mind to focus on). If someone is going with you, then bring along a game or cards or something to keep the two of you active. When my friend Steve would go with me, we would take this game called Blokus (a tile game). The one we brought was for 2 players... but others in the room were really interested in the game, so the next times we brought the bigger game for 4 players. Hahaha... the nurses knew when Cheryl and Steve were coming, one had to rearrange the chemo furniture so other patients could play :)

    You are going to be just fine!! Oh, and something that no one has mentioned for awhile... go out and buy yourself a personal little notebook. One that will fit in your purse or bag. Trust me... this will become a trusted friend!! In this notebook you can write questions as they come up, or information that is given to you. Sometimes you will be given papers, or printouts of your blood work... fold them up and put them in your notebook. If you are like some of us and get the infamous "Chemo Brain" where your memory gets a little foggy, the notebook becomes a godsend because you really won't remember something that was told to you. Write down anything you think you will want to know later :)

    Things will go great now, just you wait and see!! :)

    Hugggggs,

    Cheryl

    the pumps
    I have had both, what you are referring to, Cheryl is a self contained plastic bottle that contains a balloon inside that is filled with the meds and releases over time for no other reason than gravity and vacuum. The more common thing is what everyone else is referring to is an actual pump. It's a black electronic thing that looks much like the old "mobile" phones. It's actually electronically pumping the medicine at a specified rate/hour and you can actually hear it, faintly, as it pumps the meds, which is every 10 minutes continuously. If the line gets crimped, or whatever, it beeps at you. When it gets close to being done, it beeps at you. They always show you how to turn the beeper off and I watched them reset it just in case! They function much like the big blue pumps that are used in delivering IV chemo. It comes with it's own black case that has an attached nylon belt and you can either wear it around your waist, or I saw some just sling it over their shoulder like a back pack (although it's not nearly that big). It's much heavier than the bottle you remember. One of my chemo rounds was done with the baby bottle thing, but the next time I had to return to chemo they had returned to the electronic pumps and I asked why, cause I liked the baby bottle thing much better. She said they weren't as reliable and they weren't refillable. The baby bottle things were one use and they had to be returned to the manufacturer. The pumps are refillable.
    mary
  • Buzzard
    Buzzard Member Posts: 3,043 Member
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    msccolon said:

    the pumps
    I have had both, what you are referring to, Cheryl is a self contained plastic bottle that contains a balloon inside that is filled with the meds and releases over time for no other reason than gravity and vacuum. The more common thing is what everyone else is referring to is an actual pump. It's a black electronic thing that looks much like the old "mobile" phones. It's actually electronically pumping the medicine at a specified rate/hour and you can actually hear it, faintly, as it pumps the meds, which is every 10 minutes continuously. If the line gets crimped, or whatever, it beeps at you. When it gets close to being done, it beeps at you. They always show you how to turn the beeper off and I watched them reset it just in case! They function much like the big blue pumps that are used in delivering IV chemo. It comes with it's own black case that has an attached nylon belt and you can either wear it around your waist, or I saw some just sling it over their shoulder like a back pack (although it's not nearly that big). It's much heavier than the bottle you remember. One of my chemo rounds was done with the baby bottle thing, but the next time I had to return to chemo they had returned to the electronic pumps and I asked why, cause I liked the baby bottle thing much better. She said they weren't as reliable and they weren't refillable. The baby bottle things were one use and they had to be returned to the manufacturer. The pumps are refillable.
    mary

    yep........
    The infamous pump bag........Paducah Ky where I live is known for the American Quilters Society for the Annual Quilters convention held here every year. The bag of mine makes me look like a quilter so I am glad its going to be off before the quilt show. Its very easy to tell the visitors in town just for the fanny packs they wear. It is a great time to meet great people..........

    Lucky Lady....you will be talking the cancer/chemo talk like a Doctor does in about 2 weeks . Wait and see...it will become a second nature and it really helps to get your point across to Drs and Nurses when you converse with them. I don't think they like it very much when we finally are able to understand what they are trying to tell us ...and then we add "well, can't we try this instead?" That kinda throws em sometimes LOL....Hang in there hun...You'll be fine..Its the unknown that always scares us just to find out it was nothing in reality.........God Bless you....He'll take care of you through all of this.....He did for me........
  • usakat
    usakat Member Posts: 610 Member
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    Hello Lucky Lady!
    I like your moniker. It's says a lot about your state of mind...you're a fighter and a survivor...I'm guessing long before cancer decided to make a go at it with you.

    Sorry I'm so late responding, but I wanted to let you know that you've come to a place of friendship, support and healing. I'm bummed you have the circumstances to be here, but glad to see you reaching out and sharing with us. Just know, this is a wonderful place where people can empathize with exactly what you are going through.

    You got such good feedback so far from the others, there is not much more that I can add, other than to offer you more good thoughts, positive vibes, and many blessings and prayers for comfort, healing and restored health.

    Be Well!
    Katie
  • Scared
    Scared Member Posts: 3
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    Cocktail
    Back in 2006 I had the same cocktail minus the Avastin. As mentioned before, Buzzard did a great job explaining things for you. Just remember that your doctor and the nurses are there to help you so ask questions if you are unsure about something. You are on the road to healing! I will be thinking of you, especially tomorrow. Lisa
  • PhillieG
    PhillieG Member Posts: 4,866 Member
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    The waiting is the hardest part...
    It really is, but after a few times it will be "old hat". It's great to bring stuff to do, I found after a while I just like to sleep, that's what I do now but I just go every other week for about 2-3 hours. But even with that, I get there at 7:30 and may not get out until noon since they have to mix the meds and all. Hopefully the side effects will not be too bad for you. On the good side, it's getting warmer so the oxy and the cold may not be too much of an issue weather wise. There's still the cold foods to deal with. I hope that you do not have trouble with nausea too, there are alternatives out there too, remember that. There are many opinions on that subject but some of the oldest remedies out there are the best. That's all I'll say about that (for now)
    Do well, I know you will
    -phil
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
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    you ok? luckylady
    hey been thinking about you .how is your treatment going? hope you are feeling fine.i know i felt like crap for about 6 days after #1.take care and get some rest let us know if you are ok when you feel better.Godbless.......johnnybegood
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
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    One thought....
    I wear the fanny pack around my waist and sleep with it on. I've not had any problems or even noticed it at night. I just wear it tight enough that if I roll on my side, it goes with me.

    Lucky Lady, Saying a prayer for you today! I see your treatment began yesterday.

    Diane
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    msccolon said:

    the pumps
    I have had both, what you are referring to, Cheryl is a self contained plastic bottle that contains a balloon inside that is filled with the meds and releases over time for no other reason than gravity and vacuum. The more common thing is what everyone else is referring to is an actual pump. It's a black electronic thing that looks much like the old "mobile" phones. It's actually electronically pumping the medicine at a specified rate/hour and you can actually hear it, faintly, as it pumps the meds, which is every 10 minutes continuously. If the line gets crimped, or whatever, it beeps at you. When it gets close to being done, it beeps at you. They always show you how to turn the beeper off and I watched them reset it just in case! They function much like the big blue pumps that are used in delivering IV chemo. It comes with it's own black case that has an attached nylon belt and you can either wear it around your waist, or I saw some just sling it over their shoulder like a back pack (although it's not nearly that big). It's much heavier than the bottle you remember. One of my chemo rounds was done with the baby bottle thing, but the next time I had to return to chemo they had returned to the electronic pumps and I asked why, cause I liked the baby bottle thing much better. She said they weren't as reliable and they weren't refillable. The baby bottle things were one use and they had to be returned to the manufacturer. The pumps are refillable.
    mary

    The pumps
    Thanks, Mary!! Ya see?? Once again, I've learned something new!! I have never seen the fanny pack pump that you are talking about... everyone up here appears to be on the "bottle". So when someone mentioned that their pump was beeping at them, I thought, "Whoooa! Beeping?? How can the bottle beep at you??"

    Hahaha... so whoever I suggested putting your pump in a water bottle container and attaching it to a belt... ignore that recommendation! Obviously that won't work! LOL! But the chemo bottles fit perfectly in a water bottle belt pouch ... or you can also put them in a fanny pack :)

    Hugggggs,

    Cheryl
  • Shayenne
    Shayenne Member Posts: 2,342
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    One thought....
    I wear the fanny pack around my waist and sleep with it on. I've not had any problems or even noticed it at night. I just wear it tight enough that if I roll on my side, it goes with me.

    Lucky Lady, Saying a prayer for you today! I see your treatment began yesterday.

    Diane

    I can't...
    ... sleep with anything tied to my waist, heck, I just like sleeping in my underwear and a T-shirt, I let "Seymour" (yes I gave him a name, he is seeing me and helping me more), and I let the whole tubes out the longest, lay it next to me, so if I even turn in my sleep, the tubes are set to just roll with me. I don't sleep well with it on anyway, I look forward to the fusing and disconnecting tomorrow though! 3 down, 9 more to go!

    Hugggsss!
    ~Donna