new to group

[Guest guest]

Kaye,

No, you don't HAVE to get a port for any chemo....ports are solely

for the purpose of giving patients an easier time with their

infusions. If you DON'T have a port, and DON'T have " good veins " ,

they may have a difficult time in finding a location to put the

needle. This can be rather unpleasant...I have had 6 or 7 " sticks "

on a " bad day " just to do the infusion for a CT scan! Also, I think

5-FU can sometimes " discolor " veins in your arm if there is no port

(a minor side effect I guess, maybe not important!)...along

with " making them tougher " for future sticks (not good!). The chemo

may actually damage these small veins in the arm, an effect which is

avoided with the port.

I think if I were getting IV chemo, I would personally get the port.

Maybe you should bring this topic up again with your current

oncologist, to discuss the pros and cons for your particular case?

Hope your CEA stabilizes a bit on next test...please let us know what

happens!

Best Wishes,

> , do you have to have a port etc for Oxi?? they have advised

me against one since early on because of blood clots and my next

option maybe?? if there is one is oxi...just wondering..I see my

oncologist the 23rd..(MERRY CHRISTMAS TO ME).. I have blood work the

18th..to find out new numbers..at present time not on chemo because

of numbers going up so fast...thanks ,kaye

[Guest guest]

> Hi

> I am new to the group. My husband, Dale is almost 73 and we found

> out in January 02 that he had rectal cancer. After radiation and

> chemo, he had surgery in May 02 - also he had a stroke a few days

> before surgery so he had a rough recovery. Had additional chemo

(5FU)

> after rehab from 6/02 through about 8/02, but had only 5 or 6

> treatments and had to be hospitalized about 3 times. After a few

> weeks rest he was on Xeloda from about 10/02 through 7/03 but

stopped

> due to foot syndrome. We were told at the end of 10/03 that he had

> inoperable mets to the lungs - liver was clear so far. He started

on

> CPT-11 and had three treatments, but had low white counts so

> treatment was stopped for awhile. He suddenly developed delusions

> that I am not really his wife right after Thanksgiving. His chemo

has

> been suspended again due to his confusion - he had a CT-Scan on his

> brain two weeks ago and there were no mets or new stroke, but the

> delusion still persists even after he began taking zyprexa for it.

> His next appointment with the oncologist is in early January. I am

> having a problem figuring out what is best to do for him as far as

> treatment goes - he is angry that the oncologist isn't treating the

> cancer aggressively, but he doesn't tolerate the chemo very well

and

> everything he has to take to control the side effects of diarrhea

and

> nausea cause him to be more confused. Right now, without chemo, he

> feels pretty good and isn't in any pain from the lung mets - he

> complains of back pain, but the doctors just tell him that it's

> arthritis. I don't know if any of you have had to face these

choices,

> but any advice would be welcome.

> To close, I did look at a few posts in the archives and one post

got

> my attention asking how caregivers deal with guilt about getting

> angry with the " patient " . I used to feel bad that I would get angry

> at him after we found out about the cancer, but my friends said we

> got angry at each other before this all happened and didn't feel

> guilty about that. I don't get angry at him because he's sick, I

get

> angry at him because we've been married 20 years and he still does

> and says things to make me angry that have nothing to do with his

> illness. All of us have a 100% chance of dying sometime - most of

us

> just don't know when or how. I try every day to be a better person,

> but I am not going to be a phony person and I try to be more

> understanding to him, but I still have to be myself, (even if he

> doesn't recognize me at this time).

> Thanks all!

> P

Hi ,

Just hang in there.I noticed no one has answered your post.I myself

have no knowledge about this.It is christmas eve and tomorrow is

christmas day, give it a couple of days and someone will be along to

answer you. I am sure everyone is busy tonight and tomorrow. Take care

Merry Christmas Jana

[Guest guest]

Hi ,

Just like to say " Welcome to the Board! " . Sorry I couldn't respond to

your post sooner, but I've been offline a day or two here at

Christmas ;o)

<<I am having a problem figuring out what is best to do for him as

far as treatment goes - he is angry that the oncologist isn't

treating the cancer aggressively, but he doesn't tolerate the chemo

very well>>

Well, you know it doesn't sound like Dale's treatment has been

really " off the norm " . The combination of Camptosar/5-FU/Leuc has

been the " official FDA recommended therapy " for a couple years now,

but there are many patients who do not tolerate this combination

well. There kind of has to be a balance between QUANTITY and QUALITY

of life for a stage IV. It is often difficult to say where the line

should be drawn between " too agressive " and " not aggressive enough "

treatment. Different patients (and different oncologists!) will have

varying thoughts about this.

You know, Oncology really seems more of an " art " than

a " science " - considering the doctors have no idea WHAT if ANY chemo

will actually work on a given patient! I can tell you, however, that

there seems to be a growing feeling among a number of oncs that the

combination of Oxaliplatin/Xeloda (or Oxaliplatin and some version of

5-FU/Leucovorin) is " easier " for many patients to tolerate, and MAY

even have GREATER efficacy than Camptosar. For example, see

http://www.colorectalcancerupdate.com/edition/2003/2/hochster.htm

Have you ever talked about this with his oncologist?

There also have been a couple posts here recently regarding Camptosar

causing " mental confusion " and related effects, so perhaps Dale's

experience is not that " uncommon " .

<<Right now, without chemo, he feels pretty good and isn't in any

pain from the lung mets - he complains of back pain, but the doctors

just tell him that it's arthritis. I don't know if any of you have

had to face these choices, but any advice would be welcome.>>

I would suggest following up on this a bit. I recently began

experiencing back pain, and found out that I have tumors pressing on

my spine! I will soon have to undergo radiation in an attempt to

stop this growth. While Dale may indeed have arthritis, it does not

HURT anything to have a MRI of the spine " just in case " (tumors in

the lungs are kind of close to this area, you know).

Do you have any idea HOW MANY lung mets Dale has, and HOW BIG they

are? The reason I ask is that there may be some other " non chemo "

options (Radiofrequency Ablation and/or Stereotactic Radioablation)

which could help.

Another thing I might suggest is getting a " second opinion " at

a " Major Cancer Center " - or at least a Research Institution such as

a State University. The doctors in places like this seem to be up on

the latest treatments a little better, and might give Dale

more " peace of mind " that he is getting good treatment.

Hope this helps!

Best Wishes,

> Hi

> I am new to the group. My husband, Dale is almost 73 and we found

> out in January 02 that he had rectal cancer. After radiation and

> chemo, he had surgery in May 02 - also he had a stroke a few days

> before surgery so he had a rough recovery. Had additional chemo

(5FU)

> after rehab from 6/02 through about 8/02, but had only 5 or 6

> treatments and had to be hospitalized about 3 times. After a few

> weeks rest he was on Xeloda from about 10/02 through 7/03 but

stopped

> due to foot syndrome. We were told at the end of 10/03 that he had

> inoperable mets to the lungs - liver was clear so far. He started

on

> CPT-11 and had three treatments, but had low white counts so

> treatment was stopped for awhile. He suddenly developed delusions

> that I am not really his wife right after Thanksgiving. His chemo

has

> been suspended again due to his confusion - he had a CT-Scan on his

> brain two weeks ago and there were no mets or new stroke, but the

> delusion still persists even after he began taking zyprexa for it.

> His next appointment with the oncologist is in early January. I am

> having a problem figuring out what is best to do for him as far as

> treatment goes - he is angry that the oncologist isn't treating the

> cancer aggressively, but he doesn't tolerate the chemo very well

and

> everything he has to take to control the side effects of diarrhea

and

> nausea cause him to be more confused. Right now, without chemo, he

> feels pretty good and isn't in any pain from the lung mets - he

> complains of back pain, but the doctors just tell him that it's

> arthritis. I don't know if any of you have had to face these

choices,

> but any advice would be welcome.

> To close, I did look at a few posts in the archives and one post

got

> my attention asking how caregivers deal with guilt about getting

> angry with the " patient " . I used to feel bad that I would get angry

> at him after we found out about the cancer, but my friends said we

> got angry at each other before this all happened and didn't feel

> guilty about that. I don't get angry at him because he's sick, I

get

> angry at him because we've been married 20 years and he still does

> and says things to make me angry that have nothing to do with his

> illness. All of us have a 100% chance of dying sometime - most of

us

> just don't know when or how. I try every day to be a better person,

> but I am not going to be a phony person and I try to be more

> understanding to him, but I still have to be myself, (even if he

> doesn't recognize me at this time).

> Thanks all!

> P

[Guest guest]

Hi Jim and welcome to the board. You have come to the right place

for lots of information, compassion, and most of all a common

experience that keeps all of us going on.

While I cannot give you any information as I am not going through

what your wife is, it is quite obvious to me that she is a real

fighter and will beat this demon one way or another. And I am quite

inspired by you as well for as a fellow care giver, I know that the

last six years could not have been easy for you as the last 8 months

have been very, very hard on me (husband dx stage III July 2003, mom

dx inoperable lung cancer stage III September 2002).

Hang in there as you have so well done already and again, welcome to

the group.

Fondly,

Monika

> Hello everyone. My name is Jim and my wife has been fighting colon

> cancer for over 6 years. Started in the colon, went to her liver(had

> lobe removed,found on ovarys(had them removed), found on virgina

(had

> tumor removed). We found out on tue that she has another spot on her

> liver and now something on her pelvis bone. She went for cat scans

and

> bone scan to see if there is anything else. Ill have the results of

> that in a week. The doctor seems confident that chemo treatment will

> take care of the liver and pelvis spots that the did find. He says

> that she has responded well in the past to the chemo so she should

do

> well again.

> I wanted everyone that might post information for me to have her

> history. Ive been very upset in the last few days but after looking

up

> info on the internet i know now that my wife has a chance of being

> treated and living ALOT longer.

> I wondered why he wouldnt go in and remove the cancer but he said

> when there is 2 recurrences that the chemo was the way to go.

> If anyone would like to advise me in any way id appreciate it.

> Thank you all and I hope to continue as a part of your group.

> Let me please add that my wife has a very strong mind and while

> inside she must be worried she is very confident that everything

will

> be ok. Might be denial but its also very possitive. Just and insight

> on her state of mind.

> Thank you all.

[Guest guest]

Hi ,

Welcome to the group. I am sure you will find some useful information here, as

well as some interesting discussions, especially when members have a difference

of opinion.

Feel free to tell us as much about yourself and your diabetes as you feel like

sharing.

Mark

[Guest guest]

, Welcome to our knowledge filled group. I'm not diabetic but my husband

is so I've joined in hopes of learning about diabetes so I can help him eat

better.

Connie

new to group

HI all I am new to the group and I am new to the whole diadetic thing

too . my name is laura and I have a yelloew lab guide dog

named " apollo " from GBD .

[Guest guest]

Hi Vickie,

Welcome to the group! My name is Ruth and I have been a type 1 diabetic for

34 years. Firstly, I agree with Pat. By doing everything for your mother

just enables her to continue her behavior. This dwelling on not having her

sight should have been accepted by now. Perhaps she needs to get a new

therapist as it seems to me that he/she is doing nothing for your mother but

taking her money. Second, did you say she has a guide dog? If she does,

then she certainly doesn't deserve it! I am a guide dog user and they're

meant to help get around not be a pet for company! Perhaps the school where

the dog comes from should be notified of her not using the dog for the

reason it was given. Alot of time and effort goes into these dogs in their

training and should not be wasted! third, instead of enabling her, only

help her to do things if you see an effort being made by her to do things

for herself. As Pat says, tough love. See if there's a pier group

somewhere in your city that is of her age, blind, and active, to be mentors

for her. Anyways, again, welcome to the group! Hope this helps.

Ruth