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lou3863's picture
lou3863
Posts: 9
Joined: Mar 2016

Just had my consultation with oncologist. I have stage 3 colon cancer.  She described my treatment as 6 months, every two weeks of chemo.  The chemo I will be getting is three kinds and it does not cause loss of hair. She told me I would be getting a pump. Can anyome tell me how that is?

Do you shower with it? Any help describing what I am in for would be helpful.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Hello and welcome. You've come to the right place. You will get lots of correct information, not the outdated or even untrue stuff on Google. I'm sorry for the reason you're here.

What makes you a stage three? Mine was stage three because during surgery they found that it had spread to a few lymph nodes. Are you having surgery at all?

I'm not sure about the pump but I'm sure someone who had one will jump in here. I had a port and had a bottle I had to carry around for my first round of chemo and then had it by IV for the second round.

Jan

lou3863's picture
lou3863
Posts: 9
Joined: Mar 2016

I had half my colon removed and 19 Lymph nodes  They said one node showed cancer. 

danker
Posts: 1282
Joined: Apr 2012

I had a pump giving me 1 1/4 mg HR of FU5 24/7.  It lasted 5 weeks.  You will be giver a port(an incision in your chest,with a entry to your Arteries). The pump comes with a bag holding a weeks supply of chemo.When the bag empties, you return to you oncologist  to  have the system flushed and your chemo bag refilled.  It took the first day to get used to having the pump, but after that,it was only a minor inconvenience. The pump is easily carried around,and the connection tube is long enough to make sleeping no problem.

Hope this is what you wanted tp know. Best of luck to you!  May the chemo shrink you tumor  to nothing!!!

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

Welcome to the forum where nobody want to be, but you need very much now to beat this illness.

The way chemo goes usually is that you go in for an IV infusion for a few hours than you get this fanny pack that you wear for two days. This pumps the chemo into your blood through either a silicon pad above your chest or a PICC line in your arm. I had this line for over 6 months.

Go back to some old post to read about the side effects and what to expect.

Will you have surgery too?

Laz

lou3863's picture
lou3863
Posts: 9
Joined: Mar 2016

Had surgery already  half my colon was removed along with 19 lymph nodes. One lymph node has a trace of cancer. They said because of that lymph node I am a stage 3 and will have chemo for 6 months, every other week.  Going to have a port put in my chest on Thursday the 31, and start chemo April 4.

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

Sorry you are here for the obvious reason, but a good place.  

Folfox is the usual treatment, every two weeks for six months.  There may be additonal drugs in the combination.  I started my chemo a year ago last week (6 months, I am off it now, Stage IIIC)  I had a port placed in my chest, as people here tipped me off ahead of time, and I would be hooked up for a couple of hours at the infusion center, then on the pump for another 48 hours or so.  My wife would disconnect me (she learned how to do it, so from session 3-12, she took care of it.)  My pump worked on body heat, no batteries or noise.  Highly recommended based on what people have said about the battery types.

I would have a pouch around my waist where the bottle was.  I pretty much did what I wanted, drove a car, went to ballgames, going for walks.  I did not shower when the chemo needle was in my chest.

There are a wide range of effects, including hair loss, from the Folfox.  I was really fortunate in that though I probably had every one, most were just once and not too severe.  Actually lost body hair.  Was kind of funny.  My underarms had a soul patch  :) The neuropathy in hands and feet still lingers and you should make sure you let your oncologist know when you feel that or any other effect.  

I go through some things here

http://csn.cancer.org/user/237551

Good luck and welcome again

MAliceR's picture
MAliceR
Posts: 98
Joined: Mar 2015

Hi there,

I am glad you found your way here, but sorry you had to do so. This group is a great place for support, information sharing and where you can come when no one else understands. Everyone here does. 

I am a bit jealous that the chemo cocktail you are going to be given won't make you lose your hair. It has taken me 20 months to grow mine back to post chemo lengths. But I sure rocked some awesome wigs and hats!

I had a pump for 6 months. Every other week I had a 2 1/2 hour infusion followed by 48 hours on the pump. The pump was a bit to get used to. I learned to sleep on my back when I was wearing it, which was a chore as I have always been a side or tummy sleeper. I ended up making my own pump bags because mine had a light that flashed and it kept me awake at night. I know people who just put a piece of tape over the front of their pump bag and that worked fine too. I was told not to shower with mine. It worked on batteries and could not get wet. I never did find a way around that. The first thing I did when getting home from having it disconnected was take a shower. By the end of the 6 months, I had come to have a love hate relationship with my "little buddy" but I kept reminding myself it was taking steps so I could get on with my life. 

You will have a port implanted in your chest before your infusions begin and where you will be connected to the pump. It is an easy procedure and mine was not uncomfortable at all. When you have it done, advocate for where you want it placed. For example, I showed them the fit of my bra and asked them not to place it where it is going to be rubbed by the fabric or straps. That kind of thing. I also wanted it where I could have the infusion without having to worry about what I wore for easy access. They did a great job at placement. 

Take it one day at a time, Your first time through all of this will seem foreign and you will be out of your comfort zone. Remember to advocate for yourself. Ask questions of your medical team and if you don't get answers, ask someone else. Come here and share with this forum. Be true to yourself and your needs. Also don't forget this is often an exhausting journey, seek counseling or support if you need it along the way. 

All that said, there is still so much joy in life. Grab those moments and let them help you thrive. Cancer treatment may at times seem to take over our lives, but cancer doesn't define us. 

Blessings to you.

MAlice

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I'm starting to think I did have a pump but they never called it that. They called it a baby bottle. It was a plastic bottle that had a pouch it could go in and there was a rubber bag inside the bottle that got snaller as it emptied the chemo into me. I'd have it for a few days at a time and then a few days off and got a new bottle once a week. It went in through a line into my port. Did I have a pump? Geez, I sound like a dummy. That was two years ago. I thought a pump was something more.

Jan

Trubrit's picture
Trubrit
Posts: 5487
Joined: Jan 2013

Baby Bottle, really?!! How funny! 

Did it click every 15 seconds or so? Did it pur? The chemo was getting from the 'bottle' to your body somehow, and I'm guessing it was a pump. 

Saying that, didn't someone on the forum say theirs was powered by heartbeat or somethign? 

Waiting with your for someone with a better answer. Until then, I say you had a pump. 

Trubrit

beaumontdave's picture
beaumontdave
Posts: 1166
Joined: Aug 2013

Sue, mine was a round, plastic ball that was pressurized so it was hard at the start and like an empty balloon after 2 days. It ran on pressure through a very small orifice, this would meter the flow without pumps or such. That's my best guess as to how it worked.....................................................Dave

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

It was the size of a baby bottle, sort of. I've never heard anone else call it that. It had an outer hard clear plastic bottle and then you could see a thing inside like a thick balloon. It shrunk as the chemo went out of it. I assume it produced some pressure that made it go into the vein. Luckily it was winter so I could carry it around inside my jacket and it wasn't noticeable at all.

lou3863's picture
lou3863
Posts: 9
Joined: Mar 2016

Thank you

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

Welcome to the club that no one wants to be a part of, but these are some great people who can answer a lot of questions and get some great advice.  I'm so sorry that you're here seeking answers.  I also had stage IIIB colon cancer.  My chemotherapy treatment (FOLFOX) lasted 6 months every other week.  FOLFOX is a mixture of three different drugs.  Fluorouracil (5FU), Leucovorin and Oxaliplatin.  Mine were delivered via a bottle pump (ran on batteries) which I wore as a fanny pack back in 2009.  They do have pressure filled balls of chemo that infuse at a set rate that you don't have to have a pump for.  I'm not sure which ones they use now a days.  

I did shower every day with it or without it.  I covered the port site with a plastic wrap, taped on all four sides and it stayed pretty dry.  I continued to work full time as well.  I had a port placed in my upper left chest and my hair loss was minimal.  I think I might have lost about a third of it. My hairdresser could tell as could my husband.  I've had a few side effects because of the chemo, but I'm still living a wonderful life.  The chemo wasn't a walk in the park, but it was doable.  I became allergic to the oxaliplatin on my 7th round and just had the 5FU and the Leucovorin after that.  

Good luck with everything.  Please ask questions if you're not sure about anything.  I learned more about my cancer here than I did at my onc's office.  :)  

Love and Hugs

--Holly 

   

 

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

    I was stage 3c into 6 nodes but I had chemo over 18 years ago. In those days I had a bag of 5fu (5 flourouricil) via a canula in the back of alternate hands every Tuesday for 48 weeks. Every second week I enhanced the 5Fu with 9 tablets of levamisole , 3 a day for three days after chemo. They banned levamisole for often fatal side effects back in 2001. Things have changed a lot over the years since I had it. I wish you well with your treatment. On the whole they are more efficient and you get thru it quicker these days. Good luck .I hope things go well for you. Ron.

zx10guy
Posts: 274
Joined: Dec 2013

As the others have expressed, sorry you have to be here with us.

It's been almost 3 years since I ended treatment so my memory is a bit hazy on some of the details.  Most likely your protocol is going to be FOLFOX6.  Typically, you will be going in to the infusion clinic to get pumped full of steroids, anti nausea meds, and Leucovorin. The Leucovorin is a folic acid...vitamin C.  It's used to enhance the effects of the main chemo agent 5FU.  Your oncologist is going to most likely do a bolus shot which is an initial high does injection of 5FU in the clinic before sending you home.  At the clinic, they will also administer the Oxaliplatinin drug.  Your oncologist is most likely going to prescribe some antinausea meds for you to take outside of the clinic.  It is a good idea to take them well before showing up at the clinic and continue to take the drugs during your 2 day infusion.  You have to stay ahead of any nausea as when you feel nauseous and take the drugs then, it's too late.  Some of the IV anti-nausea drugs they may use on you are Emend and Ativan.

In my situation, I was sent home where a nurse was sent out to my home to hook me up to the pump.  The supplies for the pump were delivered the night before my infusion appointment.  The IV bag sent to my home contains 5FU.  Make sure you see the nurse hooking up your pump look at the doctor's orders for the dosage and confirms it with someone else on the medical staff.  The in home nurse called in to her offic to double check dosages and to confirm programming of the pump.  I have heard of one instance where the dosage was programmed incorrectly and the person received an overdose of 5FU.  The pump is programmed to provide a steady injection of 5FU over 46 hours.  The reason for this is because how quickly 5FU gets metabolized out of your system.  At the end of the 46 hour period, the same nurse will come back to my home and disconnect me.  I can say I would sit at home counting the minutes to seconds on when the nurse would show up to unhook me.

Something I learned from others which helped me if you get a port/power port installed in your chest, get some Lidocaine creme.  For me, the freezing spray they used in the clinic did nothing to dull the pain of when they would stick me with the IV needle into the port.  And when you see how long that harpoon is, you'll understand why.  The trick of using the Lidocaine creme 45 minutes to an hour before the appointment was a lifesaver.  I felt nothing when they would stick me with the needle.  Didn't even need them to use the freezing spray.  Your oncologist will have no problems prescribing the creme for you.  Also ask for some Tegaderm clear IV bandage.  I would apply the creme via cotton swab and then place the Tegaderm over the creme/port to let the creme soak in.

Another thing about Oxali, it's a platinum based drug ie heavy metal.  It will attack your nerve endings.  This is why people complain about neuropathy.  In addition to neuropathy, you'll also experience high sensitivity to cold.  I made the mistake of drinking some cold orange juice once.  I said once because you'll never want to experience something like that again when you're sensatized from the Oxali.  To say the experience was like drinking broken glass would be an understatement.  Also touching anything cold felt like being electrocuted.  Fortunately, the cold sensitivity went away about a day or two after the infusion.  I also have lingering effects from Oxali to this day in the form of some mild sensation on my feet of them being sort of asleep.  I have regained most of my hand dexterity and the feeling is back to where it was.  I also had first bite syndrome and cramping which I attribute to the Oxali.

Other tips.  Drink lots of water during treatment.  It will help hydrate you and help flush out any lingering 5FU from your system.  You don't want that stuff lingering in your body longer than it has to.  5FU is a DNA scrambler which primarily works against fast dividing cells...ie cancer.  But unfortunately, it also affects cells like those in your GI tract hence the nausea and diahrea side effects.  My oncologist also said taking calcium and magnesium can help minimize the effects of Oxali.

I think that's pretty much it.

sflgirl
Posts: 220
Joined: Jan 2015

Support everything said here, same for me.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

That reminds me. Regarding the port and getting stuck with the needle in it. For some reason I found that the Lidocaine did absolutely nothing to help freeze it, it always hurt. But one thing I did learn was to make sure they wait a minute after cleaning the area to stick me. If they stuck me right away it would brun inside for what seemd like a long time. If they waited a full minute it evaporated and didn't burn.

Jan

zx10guy
Posts: 274
Joined: Dec 2013

Are you sure they applied Lidocaine?  The Lidocaine creme is a numbing agent and isn't meant to "freeze" the spot.  That's why you're advised to apply the cream about 45 minutes to an hour before going in to make sure the creme has an opportunity to thoroughly numb the area.  The creme doesn't evaporate.  They'll end up cleaning up the creme before sticking you with the needle but by that time, wiping off the excess will not affect the area being numb at all.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I had Lidocaine at home I'd been prescribed and had put it on myself so I know it was there. It's expensive. It just made no difference. Didn't numb or freeze or reduce the pain of the poke at all. Maybe it's just me for some reason. My friend had told me to get some and she said it worked great.

The cleaning liquid stinging is just another aspect to watch out for, nothing to do with the Lidocaine. The liquid evaporates, not the Lidocaine

zx10guy
Posts: 274
Joined: Dec 2013

Thank you.

lou3863's picture
lou3863
Posts: 9
Joined: Mar 2016

 Finished my first round of chemo at doctors now on pump....Just got back to work. Comment was made I was pale. tell me if this is all in my head... Tried to eat a few crackers( that's all I had at my desk).  Pain up both sides of jaw only lasted a few seconds. Also I have a headache.  If anyone else had these let me know. I have the pump on and feel okay other than that jaw pain and slight headsache.  Thanks for letting me vent  Everyone have a wonderful afternoon!

Trubrit's picture
Trubrit
Posts: 5487
Joined: Jan 2013

I was an odd, pale yellow throughout most of my chemo. I called it Chemo Yellow. 

And yes, that shooting sensation on the first bite, quite something and very normal. Try to make your first bite of food, something warm, or the sensation will be a huge jolt and you may feel like you can't swallow. 

Headaches come and go. If it persists, be sure and talk to your Onc nurses. I don't remember headaches as such, but my head was fuzzy, like there was cotton wool stuffed in my forehead. 

You're on a roll now, with your first chemo pretty much done with. Just get that pump unhooked tomorrow, and you'll be good to go until your next round. 

Trubrit

lou3863's picture
lou3863
Posts: 9
Joined: Mar 2016

Thanks for the answer Nice to know it is a side effect. Do not want to be a complainer but just do not know what is real anymore.

Trubrit's picture
Trubrit
Posts: 5487
Joined: Jan 2013

It is good to be informed, but sometimes we just don't get the information before the something happens, so coming on the forum and asking was the best thing you could do. That is what we are here for. 

Trubrit

Sandralb
Posts: 6
Joined: Apr 2016

I'm new here also, my husband has the pump you are getting. The doctor said he can shower with the pump but he chooses not to.  He showers the day it goes on and while he has it on he sponge bathes.  Be cause his has a strap that goes over his shoulder he takes a belt and straps it around his waist because he isn't able to handel the movement of the pump.  Like I told him you have to do what feels right for you. 

 

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