The Colon Club

I am on second week of Irinotecan + Cetuximab. The flood gates opened this week with pretty significant diarrhea for the past two days. I called oncologist office and was told to double up my immodium dosage and see how that works for me. I have a colostomy so I can only gauge by how often and quickly that fills up... I feel tied to my house now because I have no idea how quickly it's going to fill and I dread that thought of a spill in public.

Are there other anti-diarrhea drugs that I should ask for? I am trying to keep hydrated and eat but everything is just running right through me. Feeling okay otherwise, some fatigue that I didn't have last week but overall pretty good except for the continuous runs.

Any suggestions and advice appreciated!

Thanks,

Shana

Hi Shana!

I know before transfusions my mom gets an iv anti-diarrhea medication along with zofran. Afterwards, her onc recommended Imodium depending on how her body is reacting.
Although I know there are others who have had more experience with folfiri.

Em

I had significant diarrhea with Folfox + Avastin, and even more with Foilfiri + Avastin. The Avastin and Irinotecan combined to give me massive, watery diarrhea - sometimes 10 times per day. My oncologist put me on Tincture of Opium. That stuff works and works very well. It's a tincture, so there isn't enough Opium to feel it, but it does cause opium induced constipation in normal people. With diarrhea, it more or less normalizes my bowel movement to remove the watery part, and I go 2-4 times per day with a loose movement instead of 10 times per day. I could have taken 0.6 ml per dose, 4 times per day. I chose to only take it twice per day, and three times per day when things are intense. I'm not a brown bagger, so your mileage may vary.

I did irinotecan for almost two years and the best help for diarhea was a once monthly injection of sandostatin. It works on hormones that somehow affects tour bowels.
Limotil also was helpful in combination with Imodium to keep things quite for a few hours at a time.
Really it's just part of the fun but irinotecan really kicked butt for me for quite awhile. Stay hydrated when it hits and keep up on the electrolytes to avoid cramps.
Sorry you are having trouble.
Hang in there.

Lovenothate wrote:Hi Shana!

I know before transfusions my mom gets an iv anti-diarrhea medication along with zofran. Afterwards, her onc recommended Imodium depending on how her body is reacting.
Although I know there are others who have had more experience with folfiri.

Em

Thank you for the feedback, Em. I appreciate the information. I just had chemo this morning and will see how it goes. I am taking next week off and then back in the saddle again on 8/21.

Shana

MikeManess wrote:I had significant diarrhea with Folfox + Avastin, and even more with Foilfiri + Avastin. The Avastin and Irinotecan combined to give me massive, watery diarrhea - sometimes 10 times per day. My oncologist put me on Tincture of Opium. That stuff works and works very well. It's a tincture, so there isn't enough Opium to feel it, but it does cause opium induced constipation in normal people. With diarrhea, it more or less normalizes my bowel movement to remove the watery part, and I go 2-4 times per day with a loose movement instead of 10 times per day. I could have taken 0.6 ml per dose, 4 times per day. I chose to only take it twice per day, and three times per day when things are intense. I'm not a brown bagger, so your mileage may vary.

HI Mike,

Thanks for all the info. I had chemo today and we decided to take a week off and resume on 8/21. I got a prescription for Lomotil to see how that works. I will ask about tincture of Opium at my next visit if needed. I couldn't tolerate Folfox, it ended up giving me colitis and eventually the necessary bag... I haven't tried Avastin. Glad to read that you are NED! It's always uplifting to hear that from others.

Had to laugh at YMMV because I was quite the frequent flier before this grounded me. I hope to be able to travel again once I have the disease well managed. I am hopeful

KElizabeth wrote:I did irinotecan for almost two years and the best help for diarhea was a once monthly injection of sandostatin. It works on hormones that somehow affects tour bowels.
Limotil also was helpful in combination with Imodium to keep things quite for a few hours at a time.
Really it's just part of the fun but irinotecan really kicked butt for me for quite awhile. Stay hydrated when it hits and keep up on the electrolytes to avoid cramps.
Sorry you are having trouble.
Hang in there.

Hi KElizabeth,

Thanks for the info, I've never heard of sandostatin. I just picked up a bottle of Lomotil at the pharmacy and will see how that works. I am also taking a break next week and resuming Irino + Cetux on the 21st. Did the diarrhea continue for the entire 2 years of treatment? I would definitely opt for a monthly shot to keep it under control over that long time. I need something to kick butt for me so I hope Irinotecan is the ticket this time around. My goal is a short trip to Disneyland with my daughters and a girlfriend. I need some happy times to look forward to. Thanks for the encouragement, I appreciate it more than I can say.

Take care,

Shana

Shana wrote:
Hi KElizabeth,

Thanks for the info, I've never heard of sandostatin. I just picked up a bottle of Lomotil at the pharmacy and will see how that works. I am also taking a break next week and resuming Irino + Cetux on the 21st. Did the diarrhea continue for the entire 2 years of treatment? I would definitely opt for a monthly shot to keep it under control over that long time. I need something to kick butt for me so I hope Irinotecan is the ticket this time around. My goal is a short trip to Disneyland with my daughters and a girlfriend. I need some happy times to look forward to. Thanks for the encouragement, I appreciate it more than I can say.

Take care,

Shana

Shana,
Unfortunately the late Diarhea did continue throughout treatment but the Sandostatin was a life saver. My oncologist had never heard of it until he hired a pharmacist to prepare chemo for the patients. The pharmaciShana, seen good results from it at his previous place of employment. I was the first patient my oncologist had prescribed it for. Since it worked so well for me he has prescribed if for others. I don't think I have any noticeable side effects so it really is a useful drug.
Best wishes.
Elizabeth.

Hi Elizabeth,

I am going to talk to my oncologist about it on my next appointment. The diarrhea is becoming a real pain and affecting my ability to function normally. I seem to be handling the chemo well (so far) other than the Big D!

I found a website about diarrhea meds that might be of interest to you and others. http://jhoponline.com/jhop-issue-archiv ... ea-options

Octreotide is the other name for Sandostatin. The article really shows good resolution for many patients. Thanks again for the info!

Shana

I was on Avastin+Irinotecan from March until July. It made me extremely ill for at least a week. I am talking 1 week straight of severe nausea and vomiting. And severe diarrhea. Plus extreme fatigue. And this was only half dose. I did 5 rounds. My Oncologist and I made the decision to switch me to Capecitabine/Xeloda. Just started that Friday.

I am starting to feel nauseous from the Capecitabine. Just took some Ativan. Hoping it helps.

Joecool1983 wrote:I was on Avastin+Irinotecan from March until July. It made me extremely ill for at least a week. I am talking 1 week straight of severe nausea and vomiting. And severe diarrhea. Plus extreme fatigue. And this was only half dose. I did 5 rounds. My Oncologist and I made the decision to switch me to Capecitabine/Xeloda. Just started that Friday.

Hi Joe,

I haven't been on Avastin as yet. Currently on Irinotecan+Erbitux. I've had severe diarrhea for the past 10 days. I am also on half dose for 3 weeks and then 1 week off. I'm frustrated that they are only offering Lomotil and Immodium so far since I know there are other medication options. My oncologist is on vacation so I am dealing with one of her colleagues. I can't go back to Xeloda since I had such a terrible reaction to that.

If you have Zofran that might help with the nausea too. Good luck to you, this all sucks