infusion pump/ N1 T3 Colon cancer Stage 3

Bluebird_12

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

I am on the pump. I wasn't

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.

abita

Oh, and you have that mixed

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

abita said:

Oh, and you have that mixed

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.

I want to live where you are, abita

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

Tru

abita

Trubrit said:

I want to live where you are, abita

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

Tru

Well, it is snowy and 39

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. 

Mikenh

abita said:

Well, it is snowy and 39

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. 

We have four or five inches

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.

Mikenh

Adjuvant Chemo is often 5FU

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.

Suern3

This sounds like the

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? 

Tunadog

Worry about the Oxaliplatin ...

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. 

aoccc2015

My colon is not in service

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

aoccc2015 said:

My colon is not in service

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.

Why are you on chemo for over

Why are you on chemo for over a year?

Trubrit

Mikenh said:

We have four or five inches

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.

Sunshine

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

aoccc2015

abita said:

Why are you on chemo for over

Why are you on chemo for over a year?

My peri mets dont like it

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.

James_B

Mikenh said:

Adjuvant Chemo is often 5FU

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.

Colorectal cancer

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

James_B said:

Colorectal cancer

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.

 

 

Ignore the six months and live

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

plsletitrain

Whether its pills or 5-FU

...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).  

Bluebird_12

abita said:

I am on the pump. I wasn't

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.

Colon Cancer/Infusion pump question

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...

Bluebird_12

Mikenh said:

Adjuvant Chemo is often 5FU

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.

infusion verses pills

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... 

Bluebird_12

Suern3 said:

This sounds like the

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? 

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

Trubrit

Easy choice for me

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

Tunadog said:

Worry about the Oxaliplatin ...

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. 

Chemo drugs effects??

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?