Lisa 42 questions cpt-11

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

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