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Got my date and cocktail...

aluckylady's picture
aluckylady
Posts: 16
Joined: Mar 2009

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.

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

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's picture
Buzzard
Posts: 3073
Joined: Aug 2008

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's picture
VickiCO
Posts: 934
Joined: Oct 2008

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
Posts: 68
Joined: Feb 2009

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's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

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's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

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's picture
maglets
Posts: 2596
Joined: Jun 2006

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's picture
kimby
Posts: 804
Joined: Oct 2007

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's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I know it must be scary, but this is the beginning of your healing! I'll be praying for you.

*hugs*
Gail

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

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's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

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's picture
msccolon
Posts: 1956
Joined: Oct 2004

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's picture
Buzzard
Posts: 3073
Joined: Aug 2008

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........

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

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

usakat's picture
usakat
Posts: 625
Joined: Jul 2006

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
Posts: 3
Joined: Feb 2008

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's picture
PhillieG
Posts: 4912
Joined: May 2005

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's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

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's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

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

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

... 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

SandyL
Posts: 220
Joined: Feb 2009

that my husband gets a terrific jaw spasm when he takes his first bite. At first I told him I didn't think that it could possibly be related to the chemo. But, it is. So, if you get that jaw pain-it's from the chemo, indeed. And it will pass after a short time once the pump is removed. And hopefully you won't even have this jaw thing. You'll do just fine.
Sandy

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

awww yes i have got that it is very painful and irratating.Godbless...johnnybegood

aluckylady's picture
aluckylady
Posts: 16
Joined: Mar 2009

Hi All,
I have to apologize for just writing in.
The last few days took a physical,mental and emotional toll on me.

1st session. All went well. About 4 1/2 hours. Then I came home with the fanny pack. Rested for a bit. Woke up and seemed "normal".

Day 2. 10am. Went in for about 3 hours. Felt great afterwards. My son has been going with me to the Cancer Center and staying and keeping me company, that and us playing on our laptops.
We left there and I felt "energized". Having lost over 40lbs now, none and I mean none of my clothes fit. I looked in a mirror walking out of the Center and felt I looked like Dopey, lol. So, I came up with the bright idea to go shopping! We went to Old Navy and I got a couple of shirts. Left there and went to Target and grabbed a couple pairs of Jeans. Grabbed some lunch. Got home, still feeling "energized", I started to clean my bedroom. Just a little picking up here and there. By the time I layed down in bed it was 11pm!!!!!!
Now mind you this was the first time since I had surgery I had been out of bed for more then 3 or 4 hours at a time. But, "something" wouldn't let me stop. Don't know if it was my nerves or what.

Day 3. Went in, they removed me from my fanny pack and flushed my pump, took about 15 minutes.
I came home and rested for about an hour.

All this time in the back of my mind was where and when these "side effects" would hit.
....Woke up with a slight headache, wrote that off to being tired.
....Went in the refridgerator to grab some juice...the cold tingly fingers hit, only lasted a few minutes....
Not a bad day, just slept off and on.

DAY 4..........(Saturday)I really can't tell you much about day 4. I SLEPT. I have never in my life felt so tired. Every inch of my body just wanted to lay there and not move. Aside from my family monitoring me and making me take my meds I really don't remember much else. I do pray I don't have many more of those days, but, I am afraid they are to come.
The moments I do remember being awake I remember my heart racing, feeling nauseous from time to time and somewhat shaky.

Day 5..Sunday...I slept most of the day again :( I really feel bad about this weekend because my baby girl came home from college to be with me and I barely remember seeing her.
I barely remember anything but praying for this all to be a dream and them handing me meds.

Guess I am not as tough as I always thought I was. Thought I was super-wife/mom. Here to fix everything for everyone. Always the one to take care of my family. Now I thank God I have them to take care of me.

A couple of you have mentioned my "name"...I selected that many years ago when we 1st got a computer in the house. I wanted the name IamBlessed...but that name was taken on aol. So I came up with Aluckylady. Because I feel I have indeed been a lucky lady. Now, I question that.

Thank you all for the warm thoughts and well wishes. I will continue to pray for each and every one of us. I am very thankful to have found this group. You all are such brave people and truly inspirations.

...GOD BLESS YOU ALL.

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

i know how you feel.i go for #2 tomarrow and the anxiety is getting to me.i have felt so good for the past 4 days and i know what is fixing to happen.i am not one who likes to take alot of pills but my husband told me the medicines are there to help you thru this. i am going to talk to my onc to see what she can do to help me thru all of this.maybe even an antidepressent.hang in there.between God and our friens on this site we CAN get thru this Godbless.....johnnybegood

aluckylady's picture
aluckylady
Posts: 16
Joined: Mar 2009

Johnny,
Ask your doctor about Ativan. Its really helping me. Even though I wasnt a pill taker, rarely took tylenol, I am finding that when I take the ativan, the anxiety and depression isn't as strong.

I didn't really go into detail much about the past few days. But, depression/anxiety played a big part. I now know, I need to take the ativan just like I do my pills for pain. Its a REAL disease too, and I have to pay attention to it.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Wow! You're amazing. This thing will NEVER get you down!

*hugs*
Gail

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

I, too, had a lot of sleeping when I was on chemo/radiation. I fought it for a while, but eventually gave in. Your body needs it...

You are a very strong lady. You will be fine! And what a wonderful family. How could we do this without them?

God Bless YOU! And keep fighting. Vicki

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

You did it, Rhonda! So give yourself a big old pat on the back! I'm pretty sure the super energy you had where you could run around shopping, then coming home and doing housework was because of the steroid they give you on Day 1 of your treatment and then for the days you are on the pump. You can get a real buzz off of it that just keeps you going like the energizer bunny :D The one thing I loved about that steroid is it did wonders for my arthritis... it was like I didn't have any!! I could zip around, bend my knees, go up and down stairs with no problems.. it was great!! Then, when you are finished the three days of chemo, you are also finished the steroid... and it's time to CRASH! :D So I'm not sure if it's the lack of taking the steroid or the chemo itself... or the combination of both, but ya... you need your sleep. Everyone reacts a bit differently. I tended to need naps here and there, but for the most part, I kept going... and then would have to take an ativan about 3 hours before I was going to go to bed so that I could actually fall asleep at night.

Every treatment may be slightly different. Some you will find you need the sleep... others you might not and then will wonder why you aren't tired ;)

But hang in there! You've got #1 down and over with!! Good going!! :)

Hugggggs,

Cheryl

usakat's picture
usakat
Posts: 625
Joined: Jul 2006

Hello Lucky Lady!

Glad to see you are navigating your first round of chemo quite well. As for sleep...your body needs it so answer the call and don't feel badly. You still are Super-Wife/Mom...you are just getting a tune up and recharging your batteries. Besides isn't it the love that makes you super anyway? I'm betting yes...and I'm a lucky lady too, in spite of cancer...because I have the love of a great husband and a wonderful family. Sounds like you do too.

I'll be keeping you in my thoughts and prayers for comfort, healing and restored health...

All my best,
Katie

What Cancer Cannot Do

Cancer is so limited...

It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit.

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