Lisa 42 questions cpt-11

ittapp

Hey Lisa, was wondering about the side effects of this drug. I am on Folfox with avastan so I am not even sure if this is changed out completely or cpt-11 added in place of something. will your hair fall out with this one? I do think he said he would stop the Oxi. and replace this, not for sure. We still have another treatment, after yesterdays treatment, and then pt/ct scan to see if the treatment is working on the liver nodules. It was weird though because it worked on my stomach but shrank 2 tumors on liver and 2 grew. Not sure whats going on. He said it is either acting differently than the cancer in the stomach o they are dieing off but not shrinking as of yet. He said I had a lot of necrosis in the middle of my tumors so not sure what that means either. Any info you can give me would be great. God Bless, Patti

PhillieG

I'm Not Lisa
But I've taken CPT-11. The main problem I had with it was some pretty severe stomach cramping at times. I was on it for a long time (3 years maybe?) and have thankfully been off it for 9 months or so and the Erbitux is keeping things under control.
Hope this helps Patti.
-phil

ittapp

PhillieG said:

I'm Not Lisa
But I've taken CPT-11. The main problem I had with it was some pretty severe stomach cramping at times. I was on it for a long time (3 years maybe?) and have thankfully been off it for 9 months or so and the Erbitux is keeping things under control.
Hope this helps Patti.
-phil

Thanks Phil, did you have
Thanks Phil, did you have hairloss with the cpt-11? Patti

PhillieG

ittapp said:

Thanks Phil, did you have
Thanks Phil, did you have hairloss with the cpt-11? Patti

Hair loss
Over the years I've been on assorted treatments I never lost my hair. I have had it thin out but I never lost it. So, there could be some thinning. Lisa is probably more up to date on this and when she's back posting she can probably give more info.
-p

tammy41

i was also on the folfox and
i was also on the folfox and avastan. then i went to the cpt11 and erbitux and i did not have hair loss. my hair really started to grow dont no if that was from the cpt11 or erbitux. what i did get from the cpt11 was mouth sores so hopefully you wont get that. best of luck.tammy

lisa42

cpt-11
Hi Patti,

I just finally saw your post (it's 11:30 a.m. in Calif. on Saturday).
You mentioned necrosis in the middle of your tumors... I'm pretty sure necrosis is when the tumor is starting to die off (meaning that perhaps on your scan the tumors didn't light up in the middle, or perhaps didn't have as much intensity or uptake in lighting up on the PET).
So, that's a good thing! Not sure on the how or why necrosis would appear in the center vs. the outer edge- I really don't know how that works.

If you are currently on Folfox and are going to have your oxalyplatin replaced with the cpt-11, then that combination would be called Folfiri. You've probably already read or heard this, but cpt-11 is also called Camptosar (that's what my doctor refers to it as), and it's also called irinotecan. I think irinotecan is the actual name and cpt-11 and camptosar are considered the "trade names".

Anyhow, cpt-11 is different from the oxalyplatin in how it works (not really sure on those specifics) and it also, of course, has different side effects. Phil already mentioned the stomach cramping. As with all the chemos, not everyone experiences all the side effects or in the same way. I really haven't had stomach cramping, but I have experienced problems with nausea and diarhea. I just recently got lomotil, which is a prescription med for diarhea. It's stronger than over the counter immodium. They also have something even stronger they can give you if the lomotil doesn't do the job. It works well for me. Now it's just a balancing act of how much to take to do the job (or not to do the job- pun intended!), but sometimes I'd get too nervous to go out in public for the day & I'd take it as a preventative when I wasn't even having any diarhea problems & then later it'd feel like I was trying to pass cement bricks. My onc just said it really is a balancing act & I'll learn how to control it better as time goes on. When I took it a while back, I was on it for eight months & at that time I only used the over the counter immodium & it worked fine. For whatever reason, this time I have needed something stronger than immodium. Last time when I took it, my scalp started tingling and my hair started thinning after the first 2 or 3 treatments. It never came out completely, but it got thin on the sides of my temples. Fortunately, I have thick hair and so I was able to style it so that no one really could tell. After about a month or month and a half of thinning, it stopped thinning and started growing back in again. I didn't lose any more hair the rest of the time I was on it.
This time around, I've just had two treatments of it so far & go in for my third this Wednesday. Nothing has happened with my hair yet, but we'll see how that goes.

As someone also mentioned, you can get mouth sores. I'm not sure if that's from the cpt-11 or from the 5FU. I do get some mouth sores, but they haven't been too bad. I've used Biotene mouthwash and sensitive mouth toothpaste. I also take L-lysine pills twice a day when I have the sores & it really does help. You can get lysine anywhere- I just get it at Walmart in their vitamins section & it's not too expensive. I also have been having problems with a dry nose and bloody noses, but I think that's from the Avastin. I'm actually going off the Avastin now for a while and will be interested to see if the nose problems of the alternating dry and runny nose and also bloody nose will get better. I don't know yet if I'm going off of it just temporarily or for longer. (I'm needing a colonoscopy & they don't like to do them when you're on Avastin- so I need to be off of it for six weeks beforehand). I'm also waiting for the results of a newer genetic test to let me know if Avastin will be good for me to continue on or not (sorry- I don't know the name of the test).

One other side effect I've noticed since going back on the cpt-11 is that I feel dehydrated a lot & I am always drinking water & sometimes still feel thirsty. In response to that, I can tell my skin is a bit looser. I've noticed it on my neck and arms, especially. I try to counter it by using a good moisturizer and by drinking lots of water, as I said.

It should be so nice to no longer worry about the sensitivity to cold and all the neuropathy that goes with the oxalyplatin! (you will probably still need to allow some time to recover from the neuropathy, though. Take alpha lipoic acid, L-glutamine, and B-6 for the neuropathy)

Hope I didn't go on too much about other things here- hope some of the info of what to expect is helpful to you.

You take care!

Lisa

ittapp

lisa42 said:

cpt-11
Hi Patti,

I just finally saw your post (it's 11:30 a.m. in Calif. on Saturday).
You mentioned necrosis in the middle of your tumors... I'm pretty sure necrosis is when the tumor is starting to die off (meaning that perhaps on your scan the tumors didn't light up in the middle, or perhaps didn't have as much intensity or uptake in lighting up on the PET).
So, that's a good thing! Not sure on the how or why necrosis would appear in the center vs. the outer edge- I really don't know how that works.

If you are currently on Folfox and are going to have your oxalyplatin replaced with the cpt-11, then that combination would be called Folfiri. You've probably already read or heard this, but cpt-11 is also called Camptosar (that's what my doctor refers to it as), and it's also called irinotecan. I think irinotecan is the actual name and cpt-11 and camptosar are considered the "trade names".

Anyhow, cpt-11 is different from the oxalyplatin in how it works (not really sure on those specifics) and it also, of course, has different side effects. Phil already mentioned the stomach cramping. As with all the chemos, not everyone experiences all the side effects or in the same way. I really haven't had stomach cramping, but I have experienced problems with nausea and diarhea. I just recently got lomotil, which is a prescription med for diarhea. It's stronger than over the counter immodium. They also have something even stronger they can give you if the lomotil doesn't do the job. It works well for me. Now it's just a balancing act of how much to take to do the job (or not to do the job- pun intended!), but sometimes I'd get too nervous to go out in public for the day & I'd take it as a preventative when I wasn't even having any diarhea problems & then later it'd feel like I was trying to pass cement bricks. My onc just said it really is a balancing act & I'll learn how to control it better as time goes on. When I took it a while back, I was on it for eight months & at that time I only used the over the counter immodium & it worked fine. For whatever reason, this time I have needed something stronger than immodium. Last time when I took it, my scalp started tingling and my hair started thinning after the first 2 or 3 treatments. It never came out completely, but it got thin on the sides of my temples. Fortunately, I have thick hair and so I was able to style it so that no one really could tell. After about a month or month and a half of thinning, it stopped thinning and started growing back in again. I didn't lose any more hair the rest of the time I was on it.
This time around, I've just had two treatments of it so far & go in for my third this Wednesday. Nothing has happened with my hair yet, but we'll see how that goes.

As someone also mentioned, you can get mouth sores. I'm not sure if that's from the cpt-11 or from the 5FU. I do get some mouth sores, but they haven't been too bad. I've used Biotene mouthwash and sensitive mouth toothpaste. I also take L-lysine pills twice a day when I have the sores & it really does help. You can get lysine anywhere- I just get it at Walmart in their vitamins section & it's not too expensive. I also have been having problems with a dry nose and bloody noses, but I think that's from the Avastin. I'm actually going off the Avastin now for a while and will be interested to see if the nose problems of the alternating dry and runny nose and also bloody nose will get better. I don't know yet if I'm going off of it just temporarily or for longer. (I'm needing a colonoscopy & they don't like to do them when you're on Avastin- so I need to be off of it for six weeks beforehand). I'm also waiting for the results of a newer genetic test to let me know if Avastin will be good for me to continue on or not (sorry- I don't know the name of the test).

One other side effect I've noticed since going back on the cpt-11 is that I feel dehydrated a lot & I am always drinking water & sometimes still feel thirsty. In response to that, I can tell my skin is a bit looser. I've noticed it on my neck and arms, especially. I try to counter it by using a good moisturizer and by drinking lots of water, as I said.

It should be so nice to no longer worry about the sensitivity to cold and all the neuropathy that goes with the oxalyplatin! (you will probably still need to allow some time to recover from the neuropathy, though. Take alpha lipoic acid, L-glutamine, and B-6 for the neuropathy)

Hope I didn't go on too much about other things here- hope some of the info of what to expect is helpful to you.

You take care!

Lisa

Thanks to all of you for
Thanks to all of you for responging. Patti

ittapp

lisa42 said:

cpt-11
Hi Patti,

I just finally saw your post (it's 11:30 a.m. in Calif. on Saturday).
You mentioned necrosis in the middle of your tumors... I'm pretty sure necrosis is when the tumor is starting to die off (meaning that perhaps on your scan the tumors didn't light up in the middle, or perhaps didn't have as much intensity or uptake in lighting up on the PET).
So, that's a good thing! Not sure on the how or why necrosis would appear in the center vs. the outer edge- I really don't know how that works.

If you are currently on Folfox and are going to have your oxalyplatin replaced with the cpt-11, then that combination would be called Folfiri. You've probably already read or heard this, but cpt-11 is also called Camptosar (that's what my doctor refers to it as), and it's also called irinotecan. I think irinotecan is the actual name and cpt-11 and camptosar are considered the "trade names".

Anyhow, cpt-11 is different from the oxalyplatin in how it works (not really sure on those specifics) and it also, of course, has different side effects. Phil already mentioned the stomach cramping. As with all the chemos, not everyone experiences all the side effects or in the same way. I really haven't had stomach cramping, but I have experienced problems with nausea and diarhea. I just recently got lomotil, which is a prescription med for diarhea. It's stronger than over the counter immodium. They also have something even stronger they can give you if the lomotil doesn't do the job. It works well for me. Now it's just a balancing act of how much to take to do the job (or not to do the job- pun intended!), but sometimes I'd get too nervous to go out in public for the day & I'd take it as a preventative when I wasn't even having any diarhea problems & then later it'd feel like I was trying to pass cement bricks. My onc just said it really is a balancing act & I'll learn how to control it better as time goes on. When I took it a while back, I was on it for eight months & at that time I only used the over the counter immodium & it worked fine. For whatever reason, this time I have needed something stronger than immodium. Last time when I took it, my scalp started tingling and my hair started thinning after the first 2 or 3 treatments. It never came out completely, but it got thin on the sides of my temples. Fortunately, I have thick hair and so I was able to style it so that no one really could tell. After about a month or month and a half of thinning, it stopped thinning and started growing back in again. I didn't lose any more hair the rest of the time I was on it.
This time around, I've just had two treatments of it so far & go in for my third this Wednesday. Nothing has happened with my hair yet, but we'll see how that goes.

As someone also mentioned, you can get mouth sores. I'm not sure if that's from the cpt-11 or from the 5FU. I do get some mouth sores, but they haven't been too bad. I've used Biotene mouthwash and sensitive mouth toothpaste. I also take L-lysine pills twice a day when I have the sores & it really does help. You can get lysine anywhere- I just get it at Walmart in their vitamins section & it's not too expensive. I also have been having problems with a dry nose and bloody noses, but I think that's from the Avastin. I'm actually going off the Avastin now for a while and will be interested to see if the nose problems of the alternating dry and runny nose and also bloody nose will get better. I don't know yet if I'm going off of it just temporarily or for longer. (I'm needing a colonoscopy & they don't like to do them when you're on Avastin- so I need to be off of it for six weeks beforehand). I'm also waiting for the results of a newer genetic test to let me know if Avastin will be good for me to continue on or not (sorry- I don't know the name of the test).

One other side effect I've noticed since going back on the cpt-11 is that I feel dehydrated a lot & I am always drinking water & sometimes still feel thirsty. In response to that, I can tell my skin is a bit looser. I've noticed it on my neck and arms, especially. I try to counter it by using a good moisturizer and by drinking lots of water, as I said.

It should be so nice to no longer worry about the sensitivity to cold and all the neuropathy that goes with the oxalyplatin! (you will probably still need to allow some time to recover from the neuropathy, though. Take alpha lipoic acid, L-glutamine, and B-6 for the neuropathy)

Hope I didn't go on too much about other things here- hope some of the info of what to expect is helpful to you.

You take care!

Lisa

I am not figuring out how to
I am not figuring out how to pm a person. If someone sends me message I can send back but don't know how to do it without a message. Any help would be appreciated. Patti

PamPam2

ittapp said:

I am not figuring out how to
I am not figuring out how to pm a person. If someone sends me message I can send back but don't know how to do it without a message. Any help would be appreciated. Patti

PM
Go to CSN home, look under connect-new mail-that's it. Pam

ittapp

PamPam2 said:

PM
Go to CSN home, look under connect-new mail-that's it. Pam

not seeing csn home

not seeing csn home

Shayenne

ittapp said:

not seeing csn home

not seeing csn home

Hi!!
Go to the top of the page, to the left a little, and it's right above your question, you'll see it in the blue print tabs.

claud1951

ittapp said:

I am not figuring out how to
I am not figuring out how to pm a person. If someone sends me message I can send back but don't know how to do it without a message. Any help would be appreciated. Patti

Hair Loss
Hi Patti,
I was on the cpt-11 (this was 2 years ago) and yes, most of my hair came out. The drug says it will cause "thinning". I did end up buzzing by head because it looked better. Not every one has those affects so....you might be okay.

Now, 2 years later, I am NED and hair has come back.

My best to you. Keep your energy for moving forward
Claudia

ADKer

claud1951 said:

Hair Loss
Hi Patti,
I was on the cpt-11 (this was 2 years ago) and yes, most of my hair came out. The drug says it will cause "thinning". I did end up buzzing by head because it looked better. Not every one has those affects so....you might be okay.

Now, 2 years later, I am NED and hair has come back.

My best to you. Keep your energy for moving forward
Claudia

Hair loss
I did 6 months of irinotecan(cpt-11) last year (together with oxaliplatin) and had only thinning of hair that was noticeable only to me. after about 6 months off, when I began taking irinotecan again this year, about 2/3 of my hair came out in the first 2-4 weeks. I lost enough hair that scarfs were necessary for a couple months. Now my hair is growing back. It is a little short but close enough to normal that I don't wear a scarf.

Last year, I did get mild diarrhea on the 3rd or 4th day after receiving the chemo. Two or three Immodium took care of it. This time, I have gotten mild diarrhea only 3 out of 12 cycles. I believe that the main side effect to be concerned about with irinotecan is diarrhea. Some people have a very strong reaction and can become dehydrated. In my case, it has not been a problem at all.