Re: advice needed

[Guest guest]

SORRY MY HEART WAS JUST BREAKING READING YOUR POST! IN ALL TRUTH I THINK SHE NEEDS TO SEE THE DR AGAIN AND GO OVER HER MEDS ! SORRY IF I SOUND BAD, BUT WHAT I MEAN IS MAYBE ITS TO MUCH? OR INTERACTING WITH EACH OTHER? I HOPE AND PRAY THINGS GET BETTER FOR YOU AND YOUR SISTER! HUGS SHIRLEY

[Guest guest]

SORRY MY HEART WAS JUST BREAKING READING YOUR POST! IN ALL TRUTH I THINK SHE NEEDS TO SEE THE DR AGAIN AND GO OVER HER MEDS ! SORRY IF I SOUND BAD, BUT WHAT I MEAN IS MAYBE ITS TO MUCH? OR INTERACTING WITH EACH OTHER? I HOPE AND PRAY THINGS GET BETTER FOR YOU AND YOUR SISTER! HUGS SHIRLEY

[Guest guest]

SORRY MY HEART WAS JUST BREAKING READING YOUR POST! IN ALL TRUTH I THINK SHE NEEDS TO SEE THE DR AGAIN AND GO OVER HER MEDS ! SORRY IF I SOUND BAD, BUT WHAT I MEAN IS MAYBE ITS TO MUCH? OR INTERACTING WITH EACH OTHER? I HOPE AND PRAY THINGS GET BETTER FOR YOU AND YOUR SISTER! HUGS SHIRLEY

[Guest guest]

SORRY MY HEART WAS JUST BREAKING READING YOUR POST! IN ALL TRUTH I THINK SHE NEEDS TO SEE THE DR AGAIN AND GO OVER HER MEDS ! SORRY IF I SOUND BAD, BUT WHAT I MEAN IS MAYBE ITS TO MUCH? OR INTERACTING WITH EACH OTHER? I HOPE AND PRAY THINGS GET BETTER FOR YOU AND YOUR SISTER! HUGS SHIRLEY

That's okay Shirley. The problem is that we have been trying to tell her that this dr is not treating her right and that she should not be getting pain meds from her rhuemy and her pc both, she just gets mad and tells us to mind our own business. She has had the blackout screaming fits so often lately that I wont let my kids go to her house anymore without myself or my husband. I dont know what it is going to take for her to wake up and realize that she might very well lose her son if things dont change!

a

[Guest guest]

SORRY MY HEART WAS JUST BREAKING READING YOUR POST! IN ALL TRUTH I THINK SHE NEEDS TO SEE THE DR AGAIN AND GO OVER HER MEDS ! SORRY IF I SOUND BAD, BUT WHAT I MEAN IS MAYBE ITS TO MUCH? OR INTERACTING WITH EACH OTHER? I HOPE AND PRAY THINGS GET BETTER FOR YOU AND YOUR SISTER! HUGS SHIRLEY

That's okay Shirley. The problem is that we have been trying to tell her that this dr is not treating her right and that she should not be getting pain meds from her rhuemy and her pc both, she just gets mad and tells us to mind our own business. She has had the blackout screaming fits so often lately that I wont let my kids go to her house anymore without myself or my husband. I dont know what it is going to take for her to wake up and realize that she might very well lose her son if things dont change!

a

[Guest guest]

SORRY MY HEART WAS JUST BREAKING READING YOUR POST! IN ALL TRUTH I THINK SHE NEEDS TO SEE THE DR AGAIN AND GO OVER HER MEDS ! SORRY IF I SOUND BAD, BUT WHAT I MEAN IS MAYBE ITS TO MUCH? OR INTERACTING WITH EACH OTHER? I HOPE AND PRAY THINGS GET BETTER FOR YOU AND YOUR SISTER! HUGS SHIRLEY

That's okay Shirley. The problem is that we have been trying to tell her that this dr is not treating her right and that she should not be getting pain meds from her rhuemy and her pc both, she just gets mad and tells us to mind our own business. She has had the blackout screaming fits so often lately that I wont let my kids go to her house anymore without myself or my husband. I dont know what it is going to take for her to wake up and realize that she might very well lose her son if things dont change!

a

[Guest guest]

Thank you Carol, and we will keep him here just as long as she will let us. Hopefully she will let him finish high school here, but that would surprise me.

a C

[Guest guest]

Thank you Carol, and we will keep him here just as long as she will let us. Hopefully she will let him finish high school here, but that would surprise me.

a C

[Guest guest]

Thank you Carol, and we will keep him here just as long as she will let us. Hopefully she will let him finish high school here, but that would surprise me.

a C

[Guest guest]

a C... Hey girl. I have no idea what to do but keep him away from his mom... This is so sad. I know that I have went off on Ralph like that and not even know why I did it.. I hate what lupus and the meds do to us. You and Your family are in my prayers. Love Carol

: advice needed

Okay guys, most of you know that my sister Carla is the one who got me started with this group as a support for her long before my own lupus dx. Anyway I have been trying to keep you all updated as to her health since she has had a rough time of it and has been taking an awful lot of pain meds from two or three different dr's. Anyway, her son has ALWAYS been the center of her life until about a year ago when all of these problems with the pain meds started. She will call and yell and scream at my parents and myself and then wont remember doing it within an hour. She has been doing the same thing to aot lately. Anyway, he went on a trip with his band to play in the Holiday Bowl parade and then at the halftime game show since they won second place in the parade. They had also earned money for sea world and the san diago (sp) zoo. She was supposed to pick him up at the school at 5:00 wed morning and when she did, for some reason she just went nuts on all of the band parents and his friends. She did hit him in the band room once, according to a concerned parent who later called me, but then I guess once they were in the van and her roommate Tim was driving she started punching him and slapping him and hit him with Tim's toolbag. Finally Tim made her knock it off and she told him to just take the brat to my house. Tim made her let go home and get some of his stuff and he called my dad to get there quickly. Before he could leave she got in his wallet and took his last 100 dollars from his trip money and Christmas money. She says he is not allowed to come back which I think on one hand is a good thing, we have been very worried about him for some time. It just breaks my heart because I remember when he was born and how much he meant to her and how great a mom she was before that stupid dr started giving her all these huge bottles of vicoden with the highest dose pain patch and other things. I dont want to end up in a flare, but I love this kid and there is no way that I am going to let anything bad happen to him again. So know it seems that at least for a time, we can add a 16 year old to our flock of kids! Please please pray for us, mostly for him because he is so heart broken about all of this, it's just to sad I just cry and cry for him. and suggestions on how to handle this without further damaging his relationship with his mom would be greatly appreciated!a C "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

[Guest guest]

a C... Hey girl. I have no idea what to do but keep him away from his mom... This is so sad. I know that I have went off on Ralph like that and not even know why I did it.. I hate what lupus and the meds do to us. You and Your family are in my prayers. Love Carol

: advice needed

Okay guys, most of you know that my sister Carla is the one who got me started with this group as a support for her long before my own lupus dx. Anyway I have been trying to keep you all updated as to her health since she has had a rough time of it and has been taking an awful lot of pain meds from two or three different dr's. Anyway, her son has ALWAYS been the center of her life until about a year ago when all of these problems with the pain meds started. She will call and yell and scream at my parents and myself and then wont remember doing it within an hour. She has been doing the same thing to aot lately. Anyway, he went on a trip with his band to play in the Holiday Bowl parade and then at the halftime game show since they won second place in the parade. They had also earned money for sea world and the san diago (sp) zoo. She was supposed to pick him up at the school at 5:00 wed morning and when she did, for some reason she just went nuts on all of the band parents and his friends. She did hit him in the band room once, according to a concerned parent who later called me, but then I guess once they were in the van and her roommate Tim was driving she started punching him and slapping him and hit him with Tim's toolbag. Finally Tim made her knock it off and she told him to just take the brat to my house. Tim made her let go home and get some of his stuff and he called my dad to get there quickly. Before he could leave she got in his wallet and took his last 100 dollars from his trip money and Christmas money. She says he is not allowed to come back which I think on one hand is a good thing, we have been very worried about him for some time. It just breaks my heart because I remember when he was born and how much he meant to her and how great a mom she was before that stupid dr started giving her all these huge bottles of vicoden with the highest dose pain patch and other things. I dont want to end up in a flare, but I love this kid and there is no way that I am going to let anything bad happen to him again. So know it seems that at least for a time, we can add a 16 year old to our flock of kids! Please please pray for us, mostly for him because he is so heart broken about all of this, it's just to sad I just cry and cry for him. and suggestions on how to handle this without further damaging his relationship with his mom would be greatly appreciated!a C "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

[Guest guest]

a C... Hey girl. I have no idea what to do but keep him away from his mom... This is so sad. I know that I have went off on Ralph like that and not even know why I did it.. I hate what lupus and the meds do to us. You and Your family are in my prayers. Love Carol

: advice needed

Okay guys, most of you know that my sister Carla is the one who got me started with this group as a support for her long before my own lupus dx. Anyway I have been trying to keep you all updated as to her health since she has had a rough time of it and has been taking an awful lot of pain meds from two or three different dr's. Anyway, her son has ALWAYS been the center of her life until about a year ago when all of these problems with the pain meds started. She will call and yell and scream at my parents and myself and then wont remember doing it within an hour. She has been doing the same thing to aot lately. Anyway, he went on a trip with his band to play in the Holiday Bowl parade and then at the halftime game show since they won second place in the parade. They had also earned money for sea world and the san diago (sp) zoo. She was supposed to pick him up at the school at 5:00 wed morning and when she did, for some reason she just went nuts on all of the band parents and his friends. She did hit him in the band room once, according to a concerned parent who later called me, but then I guess once they were in the van and her roommate Tim was driving she started punching him and slapping him and hit him with Tim's toolbag. Finally Tim made her knock it off and she told him to just take the brat to my house. Tim made her let go home and get some of his stuff and he called my dad to get there quickly. Before he could leave she got in his wallet and took his last 100 dollars from his trip money and Christmas money. She says he is not allowed to come back which I think on one hand is a good thing, we have been very worried about him for some time. It just breaks my heart because I remember when he was born and how much he meant to her and how great a mom she was before that stupid dr started giving her all these huge bottles of vicoden with the highest dose pain patch and other things. I dont want to end up in a flare, but I love this kid and there is no way that I am going to let anything bad happen to him again. So know it seems that at least for a time, we can add a 16 year old to our flock of kids! Please please pray for us, mostly for him because he is so heart broken about all of this, it's just to sad I just cry and cry for him. and suggestions on how to handle this without further damaging his relationship with his mom would be greatly appreciated!a C "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

[Guest guest]

a, just make sure that understands it is nothing he did wrong that made this happen. Carla Sue for sure needs some serious help. I think one thing you should do is to start calling her drs and letting them know about the other drs and meds. I know we went over this before and you didn't want to make her mad, but I really think you should do this. For her and for .

[Guest guest]

a, just make sure that understands it is nothing he did wrong that made this happen. Carla Sue for sure needs some serious help. I think one thing you should do is to start calling her drs and letting them know about the other drs and meds. I know we went over this before and you didn't want to make her mad, but I really think you should do this. For her and for .

[Guest guest]

I know we went over this before and you didn't want to make her mad, but I really think you should do this. For her and for .

I know and my parents myself and my husband all sat down with today and told him that he needs to focus on himself right now. He has been trying to take care of her for several years now and he is just a kid. We are calling her dr's on Monday and hopefully she will get help. If she does not, we are NOT sending this kid back for more. I will call this in on her before he will take any more abuse verbal or physical.

a C

[Guest guest]

I know we went over this before and you didn't want to make her mad, but I really think you should do this. For her and for .

I know and my parents myself and my husband all sat down with today and told him that he needs to focus on himself right now. He has been trying to take care of her for several years now and he is just a kid. We are calling her dr's on Monday and hopefully she will get help. If she does not, we are NOT sending this kid back for more. I will call this in on her before he will take any more abuse verbal or physical.

a C

[Guest guest]

I know we went over this before and you didn't want to make her mad, but I really think you should do this. For her and for .

I know and my parents myself and my husband all sat down with today and told him that he needs to focus on himself right now. He has been trying to take care of her for several years now and he is just a kid. We are calling her dr's on Monday and hopefully she will get help. If she does not, we are NOT sending this kid back for more. I will call this in on her before he will take any more abuse verbal or physical.

a C

[Guest guest]

My wife is stage three and I never heard of cetuximab. This was

never a option in her treatments. What is the difference?

L

>

> My husband, Jeff (45) is a stage III colon cancer patient. He

has

> had surgery and three treatments of chemo. He is taking part in a

> clinical trial which includes 5FU, Leucovorin, oxaliplatin (for 6

of

> 12 treatments) and cetuximab. For the other 6 treatments, he is

> scheduled to receive CPT-11 instead of oxaliplatin. He received

the

> cetuximab on the first treatment but experienced a horrible rash

and

> they discontinued the cetuximab. Since they discontinued the

> cetuximab (the drug tested on the clinical trial) I thought that

they

> would now take him off of the clinical trial, which would allow

him

> to receive oxaliplatin for the entire 12 treatments. When my

husband

> came home from treatment today, he said that they are keeping him

on

> the clinical trial, just not giving him cetuximab. This means

that

> he will receive CPT-11 for the last 6 treatments instead of the

> oxaliplatin. Should I be concerned about the last 6 weeks with

CPT-

> 11 instead of oxaliplatin? We felt it was somewhat of a trade-off

> because he was receiving the cetuximab. We are just not sure, now.

[Guest guest]

That is a tough call - if you are concerned about it, your best bet

is to probably get a second opinion from another oncologist.

The problem is that the treatment that he is receiving is in more or

less uncharted territory - but let me quantify what I am saying,

because a little insight into what is known about each might put the

original intent and/or future intent of the trial in better light.

Fact 1. In terms of Stage III disease, 5FU/Leuc/Oxaliplatin has

been used and was recently approved by the FDA. Trials in both the

US and Europe showed a significant decrease in the risk of

recurrance (i.e. increase the likelihood of a cure) vs. 5FU/Leuc

alone. As far as I know, CPT-11 is not approved such use, and I am

not sure how often in practice it is used for Stage III. I suspect

that oxaliplatin is used more often.

Fact 2. In a Stage IV setting, there is a known synergistic effect

with using Erbitux and Avastin with CPT-11 (neither Avastin nor

Erbitux is FDA approved to treat Stage III disease). In fact,

Erbitux is only formally approved for use with CPT-11. It is

suspected (and many use) oxaliplatin with Avastin, but study data on

whether it is as/more/less than when used with CPT-11 is not

available yet. I think Erbitux and Oxaliplatin is less used (nor

approved for use by the fda); I imagine there are also studies

ongoing seeing what effect these two have together.

Fact 3. In a Stage IV setting, using 5FU/Leuc/Oxaliplatin until it

is ineffective or cannot be tolerated, THEN going to 5FU/Leuc/CPT-

11 is more effective than either stopping after the first or going

to 5FU/Leuc by itself after stopping the first. Reversing the order

has little effect - in fact, using CPT-11 first is just slightly

better.

Fact 4. When used BY ITSELF, the oxaliplatin combination (in a

stage IV setting) extended survival in one study by two months vs.

the CPT-11 combination. But other studies, where CPT-11 was studied

on its own (vs. side to side with oxaliplatin) showed survival times

that were about the same as oxaliplatin.

So, as you can see, there are some conflicts. In an attempt to make

apples look like oranges, Fact 3 would apply to your current

situation, keeping in mind that the intent is to cure vs. prolong

survival (stage IV setting). Although it would logical to infer

that Stage IV results would translate 1-1 with Stage III results,

nobody knows for sure. So under the condition that oxaliplatin was

used until the side effects were too bad, and then CPT-11 until the

end of the six months, I think it would be optimal if you accept the

1-1 correlation between Stage III and IV. The problem is, though,

that this will probably not be the case - and unfortunately, I don't

think that anybody has studied, even in a Stage IV setting, using

one for preplanned finite period of time, then going to the other.

When used by itself (which could well be the case, since treatment

will be ended after 6 mos.), the Stage IV study data indicates

oxaliplatin might have a slight edge (and likely less side effects,

although everybody is different). And again, the oxaliplatin

combination is also the only one in a stage iii setting with a large

trial behind it.

Again, though, another doc is probably the best source of advice;

hopefully, this will allow you to frame what he/she says a little

better if you do seek the advice.

Hope this helps - hope I didn't ramble too much - Joe

>

> My husband, Jeff (45) is a stage III colon cancer patient. He

has

> had surgery and three treatments of chemo. He is taking part in a

> clinical trial which includes 5FU, Leucovorin, oxaliplatin (for 6

of

> 12 treatments) and cetuximab. For the other 6 treatments, he is

> scheduled to receive CPT-11 instead of oxaliplatin. He received

the

> cetuximab on the first treatment but experienced a horrible rash

and

> they discontinued the cetuximab. Since they discontinued the

> cetuximab (the drug tested on the clinical trial) I thought that

they

> would now take him off of the clinical trial, which would allow

him

> to receive oxaliplatin for the entire 12 treatments. When my

husband

> came home from treatment today, he said that they are keeping him

on

> the clinical trial, just not giving him cetuximab. This means

that

> he will receive CPT-11 for the last 6 treatments instead of the

> oxaliplatin. Should I be concerned about the last 6 weeks with

CPT-

> 11 instead of oxaliplatin? We felt it was somewhat of a trade-off

> because he was receiving the cetuximab. We are just not sure, now.

[Guest guest]

Cetuximab is Erbitux if I read correctly.

Sharon

> >

> > My husband, Jeff (45) is a stage III colon cancer patient. He

> has

> > had surgery and three treatments of chemo. He is taking part in

a

> > clinical trial which includes 5FU, Leucovorin, oxaliplatin (for 6

> of

> > 12 treatments) and cetuximab. For the other 6 treatments, he is

> > scheduled to receive CPT-11 instead of oxaliplatin. He received

> the

> > cetuximab on the first treatment but experienced a horrible rash

> and

> > they discontinued the cetuximab. Since they discontinued the

> > cetuximab (the drug tested on the clinical trial) I thought that

> they

> > would now take him off of the clinical trial, which would allow

> him

> > to receive oxaliplatin for the entire 12 treatments. When my

> husband

> > came home from treatment today, he said that they are keeping him

> on

> > the clinical trial, just not giving him cetuximab. This means

> that

> > he will receive CPT-11 for the last 6 treatments instead of the

> > oxaliplatin. Should I be concerned about the last 6 weeks with

> CPT-

> > 11 instead of oxaliplatin? We felt it was somewhat of a trade-

off

> > because he was receiving the cetuximab. We are just not sure,

now.