Re: Xeloda or infusion pump???

[Guest guest]

I had the pump and it was not too bad. Worst part was I did not like to wear

it in public. That is why I like my port. I have had the port so long I do

not even realize I have it most of the time. I have done a little reading and

talked to my onc about the pill. All the research I can find says the pill is

as good or better than the pump. My onc likes the pump as he fears people

will not take their pills or take them at the wrong time. MY onc says he tries

to give pills to only highly resposible people. That leaves out a lot of

people. I was shocked during chemo how many people did not know what they were

taking , what stage they were or even where their cancer is. That environment

doedsnot exist on this board.

[Guest guest]

I had the pump and it was not too bad. Worst part was I did not like to wear

it in public. That is why I like my port. I have had the port so long I do

not even realize I have it most of the time. I have done a little reading and

talked to my onc about the pill. All the research I can find says the pill is

as good or better than the pump. My onc likes the pump as he fears people

will not take their pills or take them at the wrong time. MY onc says he tries

to give pills to only highly resposible people. That leaves out a lot of

people. I was shocked during chemo how many people did not know what they were

taking , what stage they were or even where their cancer is. That environment

doedsnot exist on this board.

[Guest guest]

Hi Jan, I cannot tell you much about Xeloda since I had the infusion

pump. I would think that taking the pill would be better then having

to wear a pump for 48 hours. The pump is worn like a waist pack but

is rather cumbersome especially showering (cannot get the pump wet)

and sleeping with it. If you put it on the stand next to you you have

to be careful you do not move around too much in your sleep. I wore

mine when I slept since I have a cat that sleeps with me. Did not

want her playing with the tubing so kept the pump and tubing next to

me. Either way it makes it difficult to sleep since one does not want

to move much. Yes, I think the pill sounds like a better idea.

As for the Onc/doctor we just call them our Onc. Hope you get the

scan closer to home. Once your husband goes through all this he will

be more comfortable with it all. I too was terrified till I had to go

through with all of it. I am sending a Prayer for your husband. Ingrid

> Bill (husband, dx rectal cancer early July 05) went for his appoint

with the onc doctor who will head up the treatment plan. We were

told last week that he would have radiation & 5FU daily for five

weeks, then surgery, then more chemo. He was scheduled to start

radiation this morning.

> Now the plan has completely changed again. The OncDoc wants him to

have another scan called TRUS (Trans Rectal Ultra Sound.)

> There are three hospitals near us which do this scan and the

closest one is about 1 hour drive the other two are half a day away.

So of course we are hoping for the closest one. But the beginning of

tx is delayed yet again while they try to get him an appointment for

the scan. The cancer is on the front side of the rectum, three

inches in size, and the TRUS is to see if it has invaded the prostate.

>

> Then the doctor told him that he will have the rad and chemo

together but is pushing for Xeloda orally instead of the 5FU pump

infusion. The doctor made the pump infusion sound more complicated

than he should have in my opinion (former nursey type here) and after

the sentence that started with " your surgeon will cut right here

and ................. " , Bill just got that Deer in the Headlights

look and I could see that he was totally NOT hearing anything else.

So then when the doctor started explaining Xeloda and the

words 'take a pill' were spoken that is what Bill heard loud and

clear so he wants to do the Xeloda. The post-surgical chemo will be

an infusion chemo for four months of treatment.

>

> I have researched on the net and can only find reference to Xeloda

being used post-surgery not pre-surgery. I would really like to hear

from anyone who takes/has taken Xeloda and your reaction to it and

anything else you can add. I know we have to trust the doctor but I

still like to be informed and this list has been great.

> Jan

> P.S. Is OD an acceptable abbreviation for Oncology Doctor?:-)

Kinda like Officer of the Day.................

>

>

[Guest guest]

Hi Jan, I cannot tell you much about Xeloda since I had the infusion

pump. I would think that taking the pill would be better then having

to wear a pump for 48 hours. The pump is worn like a waist pack but

is rather cumbersome especially showering (cannot get the pump wet)

and sleeping with it. If you put it on the stand next to you you have

to be careful you do not move around too much in your sleep. I wore

mine when I slept since I have a cat that sleeps with me. Did not

want her playing with the tubing so kept the pump and tubing next to

me. Either way it makes it difficult to sleep since one does not want

to move much. Yes, I think the pill sounds like a better idea.

As for the Onc/doctor we just call them our Onc. Hope you get the

scan closer to home. Once your husband goes through all this he will

be more comfortable with it all. I too was terrified till I had to go

through with all of it. I am sending a Prayer for your husband. Ingrid

> Bill (husband, dx rectal cancer early July 05) went for his appoint

with the onc doctor who will head up the treatment plan. We were

told last week that he would have radiation & 5FU daily for five

weeks, then surgery, then more chemo. He was scheduled to start

radiation this morning.

> Now the plan has completely changed again. The OncDoc wants him to

have another scan called TRUS (Trans Rectal Ultra Sound.)

> There are three hospitals near us which do this scan and the

closest one is about 1 hour drive the other two are half a day away.

So of course we are hoping for the closest one. But the beginning of

tx is delayed yet again while they try to get him an appointment for

the scan. The cancer is on the front side of the rectum, three

inches in size, and the TRUS is to see if it has invaded the prostate.

>

> Then the doctor told him that he will have the rad and chemo

together but is pushing for Xeloda orally instead of the 5FU pump

infusion. The doctor made the pump infusion sound more complicated

than he should have in my opinion (former nursey type here) and after

the sentence that started with " your surgeon will cut right here

and ................. " , Bill just got that Deer in the Headlights

look and I could see that he was totally NOT hearing anything else.

So then when the doctor started explaining Xeloda and the

words 'take a pill' were spoken that is what Bill heard loud and

clear so he wants to do the Xeloda. The post-surgical chemo will be

an infusion chemo for four months of treatment.

>

> I have researched on the net and can only find reference to Xeloda

being used post-surgery not pre-surgery. I would really like to hear

from anyone who takes/has taken Xeloda and your reaction to it and

anything else you can add. I know we have to trust the doctor but I

still like to be informed and this list has been great.

> Jan

> P.S. Is OD an acceptable abbreviation for Oncology Doctor?:-)

Kinda like Officer of the Day.................

>

>

[Guest guest]

Now that you mention it I too noticed that some people when I was

taking chemo did not even know what chemo drugs they were recieving.

Nor did they know what was causing what reactions. But often wonder

too that if we do not know then maybe we would not be so worried.

Keep thinking of the saying (ignorance is bliss). But again I would

rather be informed. Ingrid

> I had the pump and it was not too bad. Worst part was I did not

like to wear

> it in public. That is why I like my port. I have had the port so

long I do

> not even realize I have it most of the time. I have done a little

reading and

> talked to my onc about the pill. All the research I can find says

the pill is

> as good or better than the pump. My onc likes the pump as he fears

people

> will not take their pills or take them at the wrong time. MY onc

says he tries

> to give pills to only highly resposible people. That leaves out a

lot of

> people. I was shocked during chemo how many people did not know

what they were

> taking , what stage they were or even where their cancer is. That

environment

> doedsnot exist on this board.

>

>

>

>

>

[Guest guest]

Ingrid,

Remember the other saying, knowledge is power. As scary as it is, I'd rather

know than be very unpleasantly surprised.

Ingrid Lowe lowenco@...> wrote:

Now that you mention it I too noticed that some people when I was

taking chemo did not even know what chemo drugs they were recieving.

Nor did they know what was causing what reactions. But often wonder

too that if we do not know then maybe we would not be so worried.

Keep thinking of the saying (ignorance is bliss). But again I would

rather be informed. Ingrid

> I had the pump and it was not too bad. Worst part was I did not

like to wear

> it in public. That is why I like my port. I have had the port so

long I do

> not even realize I have it most of the time. I have done a little

reading and

> talked to my onc about the pill. All the research I can find says

the pill is

> as good or better than the pump. My onc likes the pump as he fears

people

> will not take their pills or take them at the wrong time. MY onc

says he tries

> to give pills to only highly resposible people. That leaves out a

lot of

> people. I was shocked during chemo how many people did not know

what they were

> taking , what stage they were or even where their cancer is. That

environment

> doedsnot exist on this board.

>

>

>

>

>

[Guest guest]

I wear the pump and have not had any trouble with it. I wear it around

my waist when I go to bed. So far no tangles or laying on it.

I also could not imagine being given drugs without knowing what I was

getting. I always look them up before I receive or take them. I also

check every time I have chemo what drug they are hanging. It is my

body and I want to know as much as possible about what is happening.

After I had my first reaction from Oxaliplatin I relooked it up to

refresh my memory about the side effects. Next time I went in 2 nurses

told me they also researched the side effects again to check it out.

My dr. thinks it is great that I am reading the research. Knowledge is

power.

[Guest guest]

, I am with you on that. I too would rather know what is going

on. After all it is our bodies. I just do not understand the people

that do not want to know. It really blows me away that they just

kinda go with the flow and don't want to know. Ingrid

> > I had the pump and it was not too bad. Worst part was I did not

> like to wear

> > it in public. That is why I like my port. I have had the port so

> long I do

> > not even realize I have it most of the time. I have done a little

> reading and

> > talked to my onc about the pill. All the research I can find says

> the pill is

> > as good or better than the pump. My onc likes the pump as he

fears

> people

> > will not take their pills or take them at the wrong time. MY onc

> says he tries

> > to give pills to only highly resposible people. That leaves out

a

> lot of

> > people. I was shocked during chemo how many people did not know

> what they were

> > taking , what stage they were or even where their cancer is.

That

> environment

> > doedsnot exist on this board.

> >

> >

> >

> >

> >

[Guest guest]

, I am with you on that. I too would rather know what is going

on. After all it is our bodies. I just do not understand the people

that do not want to know. It really blows me away that they just

kinda go with the flow and don't want to know. Ingrid

> > I had the pump and it was not too bad. Worst part was I did not

> like to wear

> > it in public. That is why I like my port. I have had the port so

> long I do

> > not even realize I have it most of the time. I have done a little

> reading and

> > talked to my onc about the pill. All the research I can find says

> the pill is

> > as good or better than the pump. My onc likes the pump as he

fears

> people

> > will not take their pills or take them at the wrong time. MY onc

> says he tries

> > to give pills to only highly resposible people. That leaves out

a

> lot of

> > people. I was shocked during chemo how many people did not know

> what they were

> > taking , what stage they were or even where their cancer is.

That

> environment

> > doedsnot exist on this board.

> >

> >

> >

> >

> >