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Irinotecan (CPT-11): how long stay on?

taraHK
Posts: 1961
Joined: Aug 2003

I'm currently on Xeliri (Irinotecan otherwise known as CPT-11 plus Xeloda - the "pill form" of 5FU) -- plus Avastin. I'm tolerating it pretty well (although I can give you a list of moans, if you like! -- mostly about the Xeloda and my feet....).

My question is: how long can I stay on this? I just finished cycle #20, so I've been on about 10 months. My oncologist seems a little amazed that I'm tolerating so well. My feeling is: if it's working (and it seems to be: spots shrinking but not all gone yet) and I'm tolerating it "OK", then keep going -- I'm lucky and blessed!

But, I'm curious to know if others have been on -- especially Irinotecan -- for a while. I seem to remember seeing something from someone recently (Annabelle? was it you?) but of course my memory is shot to hell.....there's that....

Thanks and love,

Tara

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I had like 30 treatments of Folfiri.... which is basically what you are on (just pill form) and I was pretty blessed too with limited side effects. I took it till all my tumors were gone but 1 and had that little sucker Cyberknifed! You take care.

Jennie

smokeyjoe
Posts: 1428
Joined: Feb 2011

Hey J ennie, I 'm on Folfiri, I am new to this. So far 3 treatments, tolerating them well. Were you on Folfiri for 30 treatments straight, or did you have any breaks in treatment during that time? Are you still in treatment now? Did you have side effects as the treatments went along, wondering if as time goes on I'll start to have some side effects from it building up in my system. Any advice you can give me is appreciated!!!!

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Hi Jennie, I just started Folfiri one week ago after being switched from Folfox. I have 5 more to go. I seem to have some diarrhea off and on and more tired than the usual. Sound right? Anymore surprises to come? What about my hair? It seems to be coming out a lot in the brush and shower but not on my pillow. Thank's for any thoughts and words....:)

Gail

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

We have something else in common, started Folfiri yesterday indefinitely as it stands now. I feel great today except did not get to sleep until 5am due to the steroids, but good news they caused my hip pain to go away like when I was on Folfox. I'll take it.

My oncologist said he sees mostly "thinning" of hair not complete loss as much. I have my wig from Folfox so am prepared plus lots of scarves. My hair grew back nicely but is still much shorter than the old shoulder length blunt cut. I hope you continue to have minimal effects or none would be even better. Enjoy your day Gail. Hugs, Joyce

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

I've been on CPT11 with Erbitux (and sometimes just Erbitux) for 4 years or more. After 3-4 months on it I usually just go to Erbitux for a month or 2 then back on both.
-phil

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I was on Folfiri w avastin in 2009 for 6 months straight then went NED. During that time my biggest issue was diarrhea. Ended up taking shots of sandostatin to stop diarrhea on a bi-weekly basis with every treatment. I did not loose all my hairbut it did thin quite a bit. I was NED about 4 months when I had recurrance with 2 mets in lungs. The big one was in the hilum area and I did not want to mess around with that so I had that one Cyberknifed and its gone. The other one was smaller and in left lung. I took 2 additional Folfiri tratments and that was enough to kill it off but the weird thing was only 2 treatments made me lose ALL my hair....completely bald..ALL hair gone..eyebrows, eyelashes, legs, arms...ALL. Just could not believe that after going 6 months and not losing it all. I was on a "maintenance" chemo on my off times which was basically Folfiri minus the CPT-11. My condition now... Recovering from radiation pnemonia...which I am pretty sure is gone. There were 3 spots on my right lung last CT scan but no one could say either way whether it was pnemonia clusters or new mets..... my next scan will reveal that. So...don't really know my status for sure. I just got out of the hospital for food poisoning and dehydration..... thats all good now too. Other than som stomach pains off and on....LIFE IS GOOD! You take care!

Jennie

AnneCan
Posts: 3692
Joined: Oct 2009

I have had folfiri + avastin 27 or so times. Tomorrow I am switching to erbitux + irinotecan. I know Kathy/luvinlife2 has been on it longer than me.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

except what you asked about! Like I've said, one can be on CPT11 for a very long time. Off the top of my head I can't recall who else was on that medication. I am at 4 years plus with no substantial break and it's still working. I'm very fortunate. I have a great medical team and also a strong tolerance to things. I hope more CPT11-ers speak up.
We know you're out there...
-phil

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Tara.... I'm on straight Irinotecan (no Xeloda). I was on Xeloda earlier but it stopped working for me and I had the horrid problems with my feet on it as well.

I'm not sure that there is a limit for how long one can be on Irinotecan. I'm assuming that as long as it's working and you are tolerating it well, you can be on it indefinitely. When my onc first told me that we were going to try this she said the standard protocol would be 8 treatments (once every 3 weeks for a total of 6 months). That dose/schedule turned out to be too strong for me, so I'm now getting half doses every 2 weeks instead of full doses ever 3 weeks. It will still work out to be the same amount of chemo, but dispersed over a longer time period. She said that as long as it is going well and working, we would do the 6 months and then if things are stable for me, I would probably be due for a break at the end of 6 months. But it really will depend on how things are going and how my system is responding... likewise, I would think that is the same for everyone.

Cheryl

standbyme's picture
standbyme
Posts: 41
Joined: Sep 2008

Hi Tara,

My husband received 52 treatments of irinotecan, 5fu and avastin before it stopped working for him. He really tolerated it very well and only towards the end of treatment became quite fatigued. His doctor said you can take it as long as you can or until it stops working.

Judy

smokeyjoe
Posts: 1428
Joined: Feb 2011

Cheryl, my onc. said something to the effect of doing chemo (Folfiri) for 6 months and then maybe give me a break. Wondered if this would be a complete "break" from all chemo drugs. Seems other people go on a maintenance of some type. If you have clear scans would they put you back on chemo....my onc. talks about microscopic disease that scans don't pick up I suppose. Only side effect I have is the diarrhea, but I've had that since colon surgery and Imodiom manages that well.

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Hi, after 12 rounds of Folfox and Avastin, significant reduction in tumors I went off Folfox and stayed on Avastin only until 2 mos ago. My CEA started to climb, but my oncologist felt IF I was ever going to be a candidate for surgery now was the time. I went to Mayo Clinic, had every test possible to ensure no other cancers, except the ones in the liver and the primary tumor in colon which no longer appeared. I even had a colonoscopy 3 weeks ago, that tumor was gone.

After about 10 wonderful visits (Mayo is the best) I was accepted for a liver resection, colon resection to be safe and portal vein embolization.. Surgeon was going to remove one lobe, and then the other side would be operated on in about 2 months.

A week ago yesterday I was in the OR, excited and nervous but 100% confident I'd awake uncomfortable but in a 60% less cancer state. When they went in (laparoscope) they found quite a few "nodules" on my liver, stomach and in the abdomen - surgeon was shocked, as was everyone. They first thought it was scar tissue, and they were so tiny they blended in to lining of abdomen. They sent them out to path right away, it came back positive.

They closed me back up, I stayed one night and came home. Sad and disappointing, but at least I tried and am now back on chemo as of yesterday.

I asked if this happens a lot, they said no, so did my oncologist, but it does happen that the nodules are the size of a grain of rice, too small to absorb the sugar and show up even on a PET scan. The best they can do is hope the chemo and Avastin will keep them that way. I feel confident it will. My oncologist said they may not be "new' which I choose to think as well it makes me happier, and could have been here almost since the beginning but just never showed up. My oncologist at Mayo said it will be treated almost like an infection... I hope all goes well for you. Sorry for the long post, but hope it helps. Warm regards, Joyce

smokeyjoe
Posts: 1428
Joined: Feb 2011

Thanks so much for the reply Joyce. Hopefully the chemo will take care of those nodules and they'll disappear, I can only imagine how disappointing this was for you to wake up and find the surgery had not been done.

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