calling philleg....re erbitux

serrana

Hey Phil and all who know about Erbitux:
I know about the requirement of wild type KRAS for erbitux and the acne issue but I am wondering how it is given and in combo with what? With Folfox or Folfiri or alone or what?
What other side effects? What schedule is common? Is it used for "maintenance chemo"?
Serrana

PhillieG

Hi Serrana
Erbitux is given to me via and IV tube just like all of the other fluids/drugs they have given me. I have a port also. My infusion is over the course of 1 hour and I go back every 2 weeks. It used to be 2 hours but they shorted the time with no adverse side effects. I was given that along with good old CTP11 (irrocotican -sp?) up until maybe 6 months ago. The CPT11 never sat well with me and just made everything miserable. I had severe cramping in my stomach. Mainly the side effects for ME were the rash, split fingertips at times, rash on scalp too over time, and also these small tumor-like things that were benign on my toes. I just had one removed today. They hurt like hell when not taken care of but they are not uncommon after a while on the Erbitux.

You could see if others post on the Serrana or you could search for Erbitux Rash on the main page of our little page. Are you going to start on it? While the rash stinks, it lessens over time, it works, and YOU don't have to look at it, others do and I found people didn't treat me any worse than they usually treat me ;-)
-p
Hope this helps

serrana

PhillieG said:

Hi Serrana
Erbitux is given to me via and IV tube just like all of the other fluids/drugs they have given me. I have a port also. My infusion is over the course of 1 hour and I go back every 2 weeks. It used to be 2 hours but they shorted the time with no adverse side effects. I was given that along with good old CTP11 (irrocotican -sp?) up until maybe 6 months ago. The CPT11 never sat well with me and just made everything miserable. I had severe cramping in my stomach. Mainly the side effects for ME were the rash, split fingertips at times, rash on scalp too over time, and also these small tumor-like things that were benign on my toes. I just had one removed today. They hurt like hell when not taken care of but they are not uncommon after a while on the Erbitux.

You could see if others post on the Serrana or you could search for Erbitux Rash on the main page of our little page. Are you going to start on it? While the rash stinks, it lessens over time, it works, and YOU don't have to look at it, others do and I found people didn't treat me any worse than they usually treat me ;-)
-p
Hope this helps

calling phillieg re erbitux
Thanks Phil
Yes that did help.......I didn't know Erbitux could be given without 5FU, it is 5FU that tore up my intestines so much. How long have you been on it, how long will you be on it. What mets do you have, if you don't mind these "intimate" questions LOL.
Serrana

PhillieG

serrana said:

calling phillieg re erbitux
Thanks Phil
Yes that did help.......I didn't know Erbitux could be given without 5FU, it is 5FU that tore up my intestines so much. How long have you been on it, how long will you be on it. What mets do you have, if you don't mind these "intimate" questions LOL.
Serrana

no problem at all
Yes, it can be given by itself but usually has the CPT11. Sorry the other stuff tore up your intestines, it can all be rather caustic. The Erbitux isn't exactly chemo in that regard, it is a monoclonal antibody.
(for more info see: http://en.wikipedia.org/wiki/Cetuximab)

I have been on it for a little over 3 years, I had multiple mets to my lungs and now only have two small mets (nodes) that are located in between my lungs. How they got there I have no idea. It does make me a candidate for surgery again I believe if it is needed. My lungs are shot as far as having another operation on them, too much scar tissue after 3 operation and 1 RFA.

My turn offs and turn ons are....
:-)

serrana

PhillieG said:

no problem at all
Yes, it can be given by itself but usually has the CPT11. Sorry the other stuff tore up your intestines, it can all be rather caustic. The Erbitux isn't exactly chemo in that regard, it is a monoclonal antibody.
(for more info see: http://en.wikipedia.org/wiki/Cetuximab)

I have been on it for a little over 3 years, I had multiple mets to my lungs and now only have two small mets (nodes) that are located in between my lungs. How they got there I have no idea. It does make me a candidate for surgery again I believe if it is needed. My lungs are shot as far as having another operation on them, too much scar tissue after 3 operation and 1 RFA.

My turn offs and turn ons are....
:-)

calling phillieg
Thanks for the news that erbitux can be had without 5fu
Your survival is inspiring for sure. Seems that when one has mets everyone begins planning the funeral but since i am never having one that is a moot point.
My other question is about RFA.......would you share about that?
I have what they think are 2 lung mets, going to have an endoscopic bronchial ultrasound to biopsy them and then decision time.....surgery, RFA, other stereotactic something or other or the dreaded more chemo. I am an expert on surgery and chemo but need more info from survivors about the other options. Got any words???? Thanks in advance. Serrana

PhillieG

serrana said:

calling phillieg
Thanks for the news that erbitux can be had without 5fu
Your survival is inspiring for sure. Seems that when one has mets everyone begins planning the funeral but since i am never having one that is a moot point.
My other question is about RFA.......would you share about that?
I have what they think are 2 lung mets, going to have an endoscopic bronchial ultrasound to biopsy them and then decision time.....surgery, RFA, other stereotactic something or other or the dreaded more chemo. I am an expert on surgery and chemo but need more info from survivors about the other options. Got any words???? Thanks in advance. Serrana

RFA
Hi Serrana,
The chant for the NY Mets baseball team is "Let's Go Mets". I prefer "Let's Go(away) Mets" in this case. Funerals are for dead people, don't even go there ;-)
Thanks for your kind words.
Survival...that doesn't offend me but I like to think of my situation as living with cancer. Survival is what anyone does just getting through a day with or without cancer with all that can happen to any one at any time. We are the lucky ones (I believe) because we've gotten a wakeup call. But I understand your comment and while I'm sure I don't hold the record for longevity with Stage IV CC, I am still here and have not reached NED (yet) after 5 years and may never. I live a good life with things I can deal with and manage and have no major complaints (cancer related - plenty otherwise).

The RFA is a walk in the park compared to everything else. They give you a CT scan and while that is happening, they stick a long needle into the tumor and heat it up to fry the tumor. They use the scan to make sure it's in the right spot. It doesn't not take that long, maybe 30-60 minutes depending on one's circumstances. I only had 1 tumor removed this way. So they heat it up, put a bandaid on it and back to your room. It was an overnight stay with no discomfort at all. Pain is relative but after being pricked more times than Paris Hilton, one more needle is no big deal. I was in and out in about 24 hours. There was no recovery time and it was successful. I did develop more tumors in my lungs that were surgically removed a year ago but they were not in same spot. I'm not sure if every tumor can be dealt with this way. I know they wouldn't have done this if I had 6-7 tumors but I think 1-3 could be treated this way. It may be a decision that would be made by your Onc and surgeon. I do not know all the criteria involved.

I wonder if the stereotactic thing is where they implant a radioactive seed to destroy the tumor? I've heard of that for other forms of cancer and it's successful. I do not know anything about it, if this is the same thing, for lungs but why not try it?

I hope this helps you Serrana
all the best
-p

serrana

PhillieG said:

RFA
Hi Serrana,
The chant for the NY Mets baseball team is "Let's Go Mets". I prefer "Let's Go(away) Mets" in this case. Funerals are for dead people, don't even go there ;-)
Thanks for your kind words.
Survival...that doesn't offend me but I like to think of my situation as living with cancer. Survival is what anyone does just getting through a day with or without cancer with all that can happen to any one at any time. We are the lucky ones (I believe) because we've gotten a wakeup call. But I understand your comment and while I'm sure I don't hold the record for longevity with Stage IV CC, I am still here and have not reached NED (yet) after 5 years and may never. I live a good life with things I can deal with and manage and have no major complaints (cancer related - plenty otherwise).

The RFA is a walk in the park compared to everything else. They give you a CT scan and while that is happening, they stick a long needle into the tumor and heat it up to fry the tumor. They use the scan to make sure it's in the right spot. It doesn't not take that long, maybe 30-60 minutes depending on one's circumstances. I only had 1 tumor removed this way. So they heat it up, put a bandaid on it and back to your room. It was an overnight stay with no discomfort at all. Pain is relative but after being pricked more times than Paris Hilton, one more needle is no big deal. I was in and out in about 24 hours. There was no recovery time and it was successful. I did develop more tumors in my lungs that were surgically removed a year ago but they were not in same spot. I'm not sure if every tumor can be dealt with this way. I know they wouldn't have done this if I had 6-7 tumors but I think 1-3 could be treated this way. It may be a decision that would be made by your Onc and surgeon. I do not know all the criteria involved.

I wonder if the stereotactic thing is where they implant a radioactive seed to destroy the tumor? I've heard of that for other forms of cancer and it's successful. I do not know anything about it, if this is the same thing, for lungs but why not try it?

I hope this helps you Serrana
all the best
-p

calling phillieg- erbitux
Thanks Phil
It is always good to hear from someone who has had the procedure.
I have your survival attitude and think that attitude ( and prayer) are the key to survival.
I've been at this since 2007 and it seems that I'm on a schedule of every summer we see a lung met and the once a year frequent hosptial flier plan is ok with me.Been there done that. Probably could do a resection or an infusion w/o help by now.

I am definately one who relishes today and all the blessings that I didn't notice BC (before cancer) I am even accepting the revelation that many non-C folks have drifted off because of their fear or whatever. Survivor Buddies are so essential. KathiM shepherded me thru the shock and awe stage, slept on my hospital room floor, and I intend to help others live the good life as we know we have cancer but cancer doesn't have us.
Blessings to you
Serrana

PhillieG

serrana said:

calling phillieg- erbitux
Thanks Phil
It is always good to hear from someone who has had the procedure.
I have your survival attitude and think that attitude ( and prayer) are the key to survival.
I've been at this since 2007 and it seems that I'm on a schedule of every summer we see a lung met and the once a year frequent hosptial flier plan is ok with me.Been there done that. Probably could do a resection or an infusion w/o help by now.

I am definately one who relishes today and all the blessings that I didn't notice BC (before cancer) I am even accepting the revelation that many non-C folks have drifted off because of their fear or whatever. Survivor Buddies are so essential. KathiM shepherded me thru the shock and awe stage, slept on my hospital room floor, and I intend to help others live the good life as we know we have cancer but cancer doesn't have us.
Blessings to you
Serrana

You have the right attitude Serrana
I think there is much to be said as far as relating to a fellow cancer-ite. It helps.

As I probably mentioned, I did the 3 consecutive year lung surgery option. This year, no surgery (yet). There is an end out there. Someone told me once "Sometimes you have to go through things, not around them". This is one of those things.

Good health, stay in touch, I'm always around
-p

pluckey

Erbatux Patient
I get erabatux every week- On full coctail day (campostar, erbatux, leucavorin and folifuri/5FU; plus 5FU 48 pump at home) then the next week I get Erbatux alone.

Yes, I got the nasty acne rash. Chest, face and back. I went to a dermatologist and she prescribed some ointments that helped my face. My worst rash resulted from sun exposure- I wear a big hat and sunglasses and rarely am in direct sunlihgt. But one day I spent 5-10 mins without coverage and BAM, i was so rashy with scabs on my face and eyelids.

I also get sores on my fingers and feet. The ointments prescribed really aren't helping. It's starting to hurt to walk.

Hope this helps

dash4

Erbitux since 10/05
Hi ...just wanted to add another erbitux success story - my husband has been on erbitux since 10/05 weekly and irinotecan bi-weekly. Until recently, it has kept his cancer stable and growing very slowly.

As far as the rash -studies show now that there is a direct correlation between how bad the rash is and how well the erbitux works. Well, my husbands was realllllllly bad -saw a dermatologist doing a study and put him on soriatane ( a psoriasis medication) and he uses it now whenever the rash is getting out of hand and definitely controls it for him.
And just last week, they have started John on erbitux still weekly and 5FU with oxaliplatin to see if that will be more effective against his tumors. We are praying for more success with this latest treatment. So, erbitux can be used with different chemos depending on your history.

Hope this info gives you hope! Good luck to you!
dash

PhillieG

dash4 said:

Erbitux since 10/05
Hi ...just wanted to add another erbitux success story - my husband has been on erbitux since 10/05 weekly and irinotecan bi-weekly. Until recently, it has kept his cancer stable and growing very slowly.

As far as the rash -studies show now that there is a direct correlation between how bad the rash is and how well the erbitux works. Well, my husbands was realllllllly bad -saw a dermatologist doing a study and put him on soriatane ( a psoriasis medication) and he uses it now whenever the rash is getting out of hand and definitely controls it for him.
And just last week, they have started John on erbitux still weekly and 5FU with oxaliplatin to see if that will be more effective against his tumors. We are praying for more success with this latest treatment. So, erbitux can be used with different chemos depending on your history.

Hope this info gives you hope! Good luck to you!
dash

Hi Dash - Some Questions?
That's REALLY great news about the Erbitux and your husband's success with it. I've been on it over 3 years and until recently, was taking the irinotecan (CPT11) bi-weekly. I stopped the CPT11 because of the severe stomach cramping I had as a side effect. It kind of is very rough after a while.

Two, things:
1: did his rash subside a bit or has it maintained it's intensity who entire time? Mine has gotten less and now that I'm on an every other month and every other week regime, I get 6 weeks with no treatment and my rash goes completely away.
2: Did he also get splits on his fingertips? I have had them and at times they were bad. I used crazy glue to glue them closed at times. It stunk because I love to play guitar. Luckily it seemed to effect my right hand more (my pickin' hand) than my left hand (the chord making one) so I was able to play for the most part. I did have to go to both hands and I'd glue and tape them so I could play. I think the callouses kept them from splitting.

I'd also like to comment on what you said above about the rash being an indicator of it's effectiveness. While the presence of a rash is a positive sign it is working, the absence of the rash does not necessarily mean that it is not working. So if anyone out there is on Erbitux and don't have a rash or don't have it that bad, don't think it is not working. The scans will show it can work either way.

I am hoping that he has continued success with the chemo. We are in an amazing time in medicine that gives us options that 5 years ago we would not have had. Just think of the next few years, then the next....

dash4

PhillieG said:

Hi Dash - Some Questions?
That's REALLY great news about the Erbitux and your husband's success with it. I've been on it over 3 years and until recently, was taking the irinotecan (CPT11) bi-weekly. I stopped the CPT11 because of the severe stomach cramping I had as a side effect. It kind of is very rough after a while.

Two, things:
1: did his rash subside a bit or has it maintained it's intensity who entire time? Mine has gotten less and now that I'm on an every other month and every other week regime, I get 6 weeks with no treatment and my rash goes completely away.
2: Did he also get splits on his fingertips? I have had them and at times they were bad. I used crazy glue to glue them closed at times. It stunk because I love to play guitar. Luckily it seemed to effect my right hand more (my pickin' hand) than my left hand (the chord making one) so I was able to play for the most part. I did have to go to both hands and I'd glue and tape them so I could play. I think the callouses kept them from splitting.

I'd also like to comment on what you said above about the rash being an indicator of it's effectiveness. While the presence of a rash is a positive sign it is working, the absence of the rash does not necessarily mean that it is not working. So if anyone out there is on Erbitux and don't have a rash or don't have it that bad, don't think it is not working. The scans will show it can work either way.

I am hoping that he has continued success with the chemo. We are in an amazing time in medicine that gives us options that 5 years ago we would not have had. Just think of the next few years, then the next....

Erbitux reply - Phil...
Phil,
It is nice to hear another "erbitux" success story. John is on erbitux weekly, so unless we needed to take a break for some reason - his rash was pretty consistent till recently. When the rash would start to get out of hand - especially on his face --he would start on the soriatane and sometimes keflex also and that would get it back under control again. It had never left his body --we just controlled his scalp and face that would be full of pustules otherwise.

John is having trouble with his biliruben at the moment and has gotten stents placed in his liver. He was in the hospital with a liver infection and his pain (which is normally controlled) became unmanageable and so he had missed 3 weeks of treatment and his entire rash just disappeared.

About 5 months ago, scans showed the chemo not working so well and the intensity of his rash has been less since that time also. My comment on the rash is based on what the oncologist had told us about the recent study. I am definitely a believer that each individual needs to be an advocate for himself since our bodies have not read the research and everyone does react their own way. For John, the rash has been an indicator, but I agree that may not be true for all....the scans are the best test to check the progress.

John's fingernails also split at times -I think you have a worse case, but probably due to you playing the guitar and "needing" your nails more. Super glue is all we know about also to "fix" it. John actually has more problems with his toenails than his fingernails, but they are more of an annoyance than anything...he has had some fall off and then grow back.

I also pray for your continued success and good health. It is interesting that you are on and off the erbitux regularly. That would give your body a break to build up again. That was not an option for John. I guess because his cancer has continued to grow even though it was veryyyy slow until recently. I too believe that we are in an amazing time with medicine and it always continues to give us hope.

It is so nice to be back on this discussion board and hear from others like yourself. Take care and have a beautiful day!
Dash