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infusion pump/ N1 T3 Colon cancer Stage 3

Bluebird_12
Posts: 7
Joined: Feb 2018

I had a colon mass removed Jan 2018. Have been running tests for past two wks to determinine right chemo treatment and return back to Oncologist in 1 week. Doctor said to start tell her if I want infusion pump or pills of Oxaliplatin to start before chemo. I'm not understanding why need infusion pump or pills & what the difference is, if the side effects are the same? Just wondering if anyone can shed light on this... Thanks in advance.

abita's picture
abita
Posts: 833
Joined: Dec 2017

I am on the pump. I wasn't given a choice. The pump is annoying, but you kind of get used to it. I don't know the differences in side effects. I had 4 infusions, got liver resection and starting the last 8 infusions at the end of February. They attach the pump after my hospital infusion, then I return 46 hours later to be disconnected from it. Mine is in a bag with a shoulder strap. The hardest part is sleeping, but weirdly, my body doesn't move much when I sleep with it. It does make a noise, just like the iv. I leave the tv on low to cover up the sound. I too am curious if the pills have different side effects. I am not answering your question since I can't compare them. I am merely letting you know that if you decide on the pump, while annoying, you do get used to it. My biggest problem so far was when my Maine **** giant tried to open the bag to find out what that sound was.

Bluebird_12
Posts: 7
Joined: Feb 2018

I appreciate your response to infusion pump. I will be having some training at my doctors office this week on chemo which is very new to me. Hopefully it will answer some of my questions as well as calm some anxiety...

abita's picture
abita
Posts: 833
Joined: Dec 2017

Oh, and you have that mixed up a bit. The oxiplatin will be given in the iv at hospital. That is the one that causes the cold sensitivity. The drug in the pump is 5fu, and the pill form is Xeloda i believe. The cold sensitivity is bad, but is also manageable. Especially since it is warming up outside. You learn to turn the hot water on when you go to the bathroom so it is warm by the time you wash your hands. It took me 2 rounds before I realized to stop putting the water pitcher back in the fridge :)  Have some ice cream while you still can! 

 

Edit: My nurse said the oxipaltin was the cause of the cold sensitivty, but I don't know for sure. But I do know that they tell me to stop drinking cold water when they hook that one up.

Trubrit's picture
Trubrit
Posts: 5226
Joined: Jan 2013

next week, our high temperatures will be in the mid to low 30's, with wind a wind chill to boot. 

Tru

abita's picture
abita
Posts: 833
Joined: Dec 2017

Well, it is snowy and 34 degrees today. Tues and Wed is supposed to be sunny and 70. I restart chemo on the 26th. March isn't necessarily warn but when it gets to say 50, walking around outside doesn't hurt. When it was in the teens and 20s, the cold sensitivity hurt so bad. It is nice to have warmer weather to look forward to when I am dreading going back on chemo for 8 more rounds. 

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Mikenh
Posts: 777
Joined: Oct 2017

We have four or five inches on the ground right now but the temperatures will get up into the low 40s today and the high 40s tomorrow so it should melt quickly and I'm not going to bother cleaning the roof unless I see more on the roof when I go outside to look at it.

Wow! I just looked at Tuesday and it says 61 degrees and 71 degrees on Wednesday. I will go out for a walk for sure! Maybe even in T-Shirt and shorts! This will be a very sweet gift after a rough winter.

Trubrit's picture
Trubrit
Posts: 5226
Joined: Jan 2013

Tomorrow we are supposed to start at - 2˚ F.  and not get out of the low 30's the whole week. If only we had the snow to match the season. Desert needs its snow. 

Tru

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Adjuvant Chemo is often 5FU and Oxaliplatin. 5FU is the infused form and Xeloda is the name brand of the pill form of 5 FU. So you have a choice of the form of 5FU that you get - infusion or pill. I took the pills for neo-adjuvant chemo (before surgery) and the side-effects were minor for me but they can be major for some folks. Some here have reported significant fatigue from Xeloda.

Others have described the pump so I'll describe the pills. I'm on a three-week cycle. On the first day, I get an infusion of Oxaliplatin which lasts about two hours. The actualy process takes most of the morning because they take blood, check the results, give you anti-nausea drugs and then do the infusion. I take the Xeloda pills for the first two weeks of the cycle. Pills in the morning and evening after food. Then I have a week off. That's the cycle.

I had the Xeloda alone for Neo-Ajduvant and the Xeloda + Oxaliplatin for Adjuvant so I can tell which side-effects come from the Oxaliplatin. The Oncologist's office should have someone give you a chemo training session which should explain the potential side-effects and answer questions that you have. In many cases, I expect that folks are someone still shocked to be there and may not really grasp the potential of the side-effects. They can hit you like a ton of bricks though.

I have an iCloud Notes file where I keep a list of the side-effects and the effect level from one to ten. From my list: Neuropathy in fingertips, Arthritic Palms, Cold Sensitivity, Throat Closing, Calf Cramps, High Bag Output, First Bite Shock, Painful Tears, Fatigue, Nausea, Metal Taste. These are things that I have experienced. I would say that the cold sensitivity and throat closing are the biggest headaches but a lot of that has to do with being in New England during the winter time.

One really important item: report side effects, problems, pain, etc. to your oncologist. They can adjust dosage, give you a chemo break or add meds or suggest things to deal with problems but they won't know that you have problems unless you tell them. They also have emergency procedures for severe problems and pay attention to these. I think that severe problems are rare but they can be life-threatening for a few.

James_B
Posts: 14
Joined: Feb 2018

Have Colorectal cancer and chemo treatment (after 6 secession of chemo treatment with Oxaliplatin (infusion) and Capecitabine (oral)) for almost half a year, the treatment fail. Doc say I have 6 month to go.   What I don't understand is, I don't get much of the side effect. I am at lost.

 

 

Trubrit's picture
Trubrit
Posts: 5226
Joined: Jan 2013

Live like you have six years, six more after that. Pick an age (mine is 82) and make that your goal. 

It is gut wrenching to be told 'you only have...' so prove them wrong. 

Welcome to the forum.  Stick with us, we will help you make it past the six months and onward. 

Tru

James_B
Posts: 14
Joined: Feb 2018

Thanks ! at the moment… been try to over come the side effect. 

Bluebird_12
Posts: 7
Joined: Feb 2018

Thank you so much for all the details. I know its not easy to go through & re-live this for me, but I really appreciate all this. I will be having chemo-training I think this week at my doctors apt possibly tomorrow. I will try to be patient without letting anxiety rule me. The doctor said at my last visit I'd have a chance to tell her if I want to start with pills or infusion at first & then ongoing chemo. I did ask if the oxaliplatin was going to be given with the other chemo drugs on two weeks on schedule and doctor said yes, so that was the reason for wondering why Id need to make a decision on beginning this whole process with pills or infusion pump. But like I said, & your help, it will probably make sense after appointment.  Thanks... 

Suern3's picture
Suern3
Posts: 2
Joined: Feb 2018

This sounds like the treatment they are wanting me to start on. He sorta gave me a choice between doing the home iv infusion 5fu, combo that seems a lot of people do here or the pills and Oxaliplatin infusion every 3 weeks. I know that sounds more convenient for a working person, but I would rather the treatment with the least uncomfortable side effects.  Or does it not matter, side effects bad with either? 

Bluebird_12
Posts: 7
Joined: Feb 2018

It does sound similar. I'll go back to doctor this week for chemo training & hopefully it will make sense. If we're gonna have side effects, it probably won't stop either with pump or pills, we just have to be strong either way, but if we go inless to doctors appt's, that could be nice. Thanks for your help

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Tunadog
Posts: 235
Joined: Mar 2017

The side effects of Xeloda are manageable for me.

Oxaliplatin side effects are much worse and cause Peripheral Neuropathy. I’m almost 1 1/2 years out from my last Oxaliplatin infusion and still waiting to recover completely. 

It’s looking good, it’s a challenge, but I’m still here more than 2 1/2 years since diagnosis.

I’m looking forward to years to come. 

Bluebird_12
Posts: 7
Joined: Feb 2018

When you get side effects, do they happen immediately? Do you have chemo treatment then as soon as treatment goes in for day , experience side effects within minutes? Do you have chance to get home before nausea, or vommiting? This is new to me, & trying to see if my husband will need to set up support of friends that can sit with me for the day of treatments or are the side effects random through the day?

Trubrit's picture
Trubrit
Posts: 5226
Joined: Jan 2013

You won't know which your husband will get, though there are a few givens, like the sensitivity to cold. I think few pass that one by. Touching anything cold can give an electrical shock type feeling, so gloves are a good investment.  And drinking anything cold makes you feel like your throat is closing up. My Onc told me that its a sensation and isn't really happening, but it is frightening. So, warm drinks. Fatigue, is another given. I had it bad, but others have a passable amount. You will not know what your husband will get. It is frustrating. 

They can start immedientely or come on gradually. I had my first expereince of the throat closing at my first infusion. I drank a cold drink.  The fatigue came on after the first few treatments and got progressivly worse. 

Tru

 

abita's picture
abita
Posts: 833
Joined: Dec 2017

Knock on wood, because I am doing my follow up  chemo, or mop up, staring next week. I had 4 infusions before my liver resection with no nausea. I get an anti nausea med in iv that  covers me for the 3 days I do have pills that are similar to what I get in the drip but have not had to use then yet.  My side effects were cold sensitivity and fatigue. For me the cold sensitivity last about a week however the last few days it isn't as bad and I can drink cold beverages and that sort of thing.  Weirdly my mouth gets numb during the infusion of the oxiplatin.  My stomach is numb but I don't know for sure that is the chemo it could be the surgery.  My hair has thinned a bit. 

James_B
Posts: 14
Joined: Feb 2018

 Peripheral Neuropathy  I think that what happend to me right now, but don't you have problem grip small things on your finger? or balance problems during walking? I still have my hair…(though I am going to lost it).

aoccc2015
Posts: 37
Joined: Sep 2017

My colon is not in service and a bit of active Crohns so i was worried about absorbing all of the pills so i just stuck with the pump..that and the fact my max insurance was hit and it was free compared to the pills. Im a year and a few months in on the pump and I am almost at the point getting tired of the pump. We will see lol.

abita's picture
abita
Posts: 833
Joined: Dec 2017

Why are you on chemo for over a year?

aoccc2015
Posts: 37
Joined: Sep 2017

My peri mets dont like it when im not on chemo:) But yeah between half year of oxi then half year of iri keeps them quiet and shrinking somewhat...ill ride it til it all quits working...also a quick tip i take that pump out of the bag and wire it under my shirt into my pocket. Makes it so easy to work or sleep, just have to have the right jeans that will fit that 1980s technology into.

plsletitrain
Posts: 253
Joined: Jul 2017

...the oxaliplatin is still there and it is the oxaliplatin that's the should I say, "headache".  Not literal headache, although I did feel some while at it, but headache in the sense that its usually the one that brings the bad side effects.  I do think, in my personal observation, that the oxaliplatin while on the pills is heavier as when in 5-FU.  I had 3 cycles of 5-FU via IV and I felt nothing, only the loneliness of having to wait for that last drip which will happen in 2 days.  For convenience, I shifted to the pills and that's where the oxaliplatin kicked my butt.  I managed 4 of it and decided to stop.  I do believe though that when in pills, the oxy is much heavier because 12 cycles of Folfox (the one on pump) is equivalent to only 8 cycles of capox (the one on pills).  

Trubrit's picture
Trubrit
Posts: 5226
Joined: Jan 2013

I used to choke swallowing pills, and those chemo pills are huge, so I chose the 5FU pump. 

I had terrible side effects, which was probably the combo of FOLFOX & 5FU, followed up by radiation. 

I hate having to make decisions, especially about something I know nothing about. 

I wish you the best of luck in whatever you decided.  Visit often, and we'll work through this together. 

Tru

Bluebird_12
Posts: 7
Joined: Feb 2018

Thanks, I hadn't thought about pill size. So far nothing has been said about having radiation. Prayers4U through your treatments. Hopefully during chemo training at the doctors office this week I'll be enlightened. Its only scary and causes anxiety without more knowledge.

Thanks to you and all the others on this site. 

Trubrit's picture
Trubrit
Posts: 5226
Joined: Jan 2013

You sounds like you are a person to have all your ducks in a row, so this is probably preacing to the choir. But a note book is invaluable. Write everything you can down (or take a tape recorder. One of those little ones). I used a note book throughout my treatment. I wrote everything they said down, and I wrote every single thing I went through down, and then went over it with the Oncolgosit before every treatment. 

Tru

Bluebird_12
Posts: 7
Joined: Feb 2018

I will definitely write all down. Great idea. 1st in my family to go through this, so a journal is the way to go. Thanks

 

Annabelle41415's picture
Annabelle41415
Posts: 6554
Joined: Feb 2009

Mine was the pills/radiation first then surgery, then 5FU infusion after that.  Doctor told me that the infusion is a much greater strength and effectivness is greater with infusion than pill that they gave me.  I'm not sure about the strength that others have gotten with the pill.  The pill gave me no side effects but the infusion gave me lasting neuropathy.  Even after telling my doctor after 5 rounds that it was really bothering me, she wouldn't reduce it.  If you experience a feeling that gets worse or just doesn't feel right tell them right away and be persistent.  Wishing you the best.

Kim

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