Controlling diarrhea while on Irinotecan with Sandostatin?

Please feel free to read, share your thoughts, your stories and connect with others!
Steve Marethyu
Posts: 49
Joined: Sun May 29, 2011 10:49 am

Controlling diarrhea while on Irinotecan with Sandostatin?

Postby Steve Marethyu » Sun Nov 03, 2019 10:44 pm

Well, I'm back again, as I'm starting up another round of chemo on the 11th. I most recently was on irinotecan and erbitux from August 2017 through June 2018. As a result of side effects and mental and spiritual fatigue I decided to take a break and move back closer to my family. I saw an oncologist there and told him about the horrible and unpredictable bouts of diarrhea that I would have on irinotecan and how isolating and mentally draining it was to deal with.

Previously I had tried Immodium and Lemotil, but Immodium seemed to have no effect during the episodes and Lemotil made me dizzy, which is particularly bad, because I have neuropathy in my right leg from radiation treatments that makes me unsteady on my feet already.

The new oncologist recommended hyoscyamine and/or Sandostatin to see if they would help. I didn't end up resuming chemo while there, and have now moved back to my old doctor. I mentioned Sandostatin to him and he seemed surprised by it, because I think it's meant for another kind of cancer. I was wondering if anyone here had used any of these drugs and if they'd seen any improvement.

I waited 16 months while my lung mets slowly grew, because I am really not sure I can handle this treatment again. I'm not sure how I made it through 10 months back then, and am now facing an indefinite time as the nodes are getting quite large. I'm hoping that maybe we can get the diarrhea under control and then I can live with the other side effects.
Dx Stage I rectal; 19 lymph nodes clear; age 28.
APR in 1/08; no chemo
Lung met 5/11: VATS 7/11
Folfox/Xelox 9 times; Avastin (1 dose, major bleeding);
13 & 14- Sacrum met, trad. radiation & proton
4/14- severe neuropathy right leg
1/16-4/17- 6 rounds folfiri; Lots of 5-FU/Av
8/17-6/18- Irinotecan and erbitux; severe, unpredictable diarrhea
16 month chemo break, bc I needed it
10/19- multiple, bilateral lung mets; largest ~7.5 cm; persistent cough
11/11/19- resuming Irino and erb and dreading it.

User avatar
Posts: 579
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Controlling diarrhea while on Irinotecan with Sandostatin?

Postby Jacques » Mon Nov 04, 2019 12:21 am

I'm sorry to hear of your continued problems with diarrhea. I don't have much to offer in this area, but I noticed on the Internet that Sandostatin is used for a number of difficult GI diarrhea cases, some of them off-label:

I hope that it can provide some relief as you re-start your Irinotecan regimen. Have you tried probiotics for restoring the balance of gut bacteria?

Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”

Who is online

Users browsing this forum: No registered users and 32 guests