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How do you survive CPT 11?

tabbyfatgirl1's picture
Posts: 17
Joined: Nov 2011

Hi all, its been a while since I've posted.  I am the care taker for my husband who has stage IV Colorectal cancer with mets to the liver, both lungs & abdominal wall. Original diagnosis & A/P Resection w/Colostomy 8/2011.  He's had 5FU by mouth while on radiation, then Folfox regimen.  Had to stop Folfox due to shortness of breath (O2 did not help).  He has lumps that have come up in his right groin & close to the original posterior wound, these of course are cancer.  Now Onc has put him on chemo Irinotecin (Camptosar) they call CPT11.  He did not have the diarrhea for the first 2 tx, in fact did great.  However on the third week of the first round he started diarrhea 2 days later.  He is barely eating, but is drinking some which of course goes right through. He's taking Lomotil, they've also given him Sandostatin shot.  Also, he had a small stroke in the right parietal region immediately after stopping that 3rd week's chemo.  the only thing affected was speech and vision.  The onc has stopped chemo for 2 weeks.  He's had fluids twice, is barely better. 

Here is my question -- Have any of you had this chemo & if so, how did you handle diarrhea, weakness, no appetite?  Are there any tips you can give as far as appetite stimulant - anything that could help him.  He is just so weak - he's lost at least 10 pounds.  I see him shrinking before my eyes and I can't stand it.  The onc nurse said this is very typical of other patients, but how do you SURVIVE it?

Thank you all so much! 


Jolene Elliott

Posts: 1170
Joined: Sep 2012

Hi Jolene. It seems like you and your husband are going through a very difficult time. My husband, Steve has stage four colorectal, as well. It is so hard to watch them suffer. Such a helpless feeling.

Steve has had a total of 23 sessions of Irenotecan. He has tolerated it very well. Constipation and diarrhea have not yet been a problem. He has an ileostomy. The consistency is usually normal. During chemo, the nurse gives him a steroid called dexamethasone (decadron). Not sure if it's 4 mg or 8 mg. This causes him to come home with a big appetite which usually lasts for several days. Also seems to give him energy. He is no longer taking this steroid (long story - bad reaction with blood thinners) with his chemo. So far he has only had one session without it. He came home with no appetite. The thought of food turns him off. He is forcing it down regardless as he wants to keep up his strength. Some centers seem to offer this steroid, while others do not.

Make sure he drinks lots of water. I make Steve smoothies in the blender. (yogurt or ice-cream, berries, banana, kale, fruit juice etc...). I also try to shake it up a bit with the grocery shopping. He seems to tire of foods quite easily. I buy a lot of different foods that are new to him. It's not easy. Sorry you are both dealing with this horrible disease. Good luck. I hope it turns around quickly.


Posts: 188
Joined: Apr 2011

Hi Jolene, My husband Roger had CPT 11 just once the side effects were to rough on him, diarrhea, vomiting, uncontrollable hiccups and couldn't sleep, it also totally wiped out his WBC count.  Hope things improve for you two.  Blessings Kim

PhillieG's picture
Posts: 4912
Joined: May 2005

Sorry to hear of your husbands DX. I've been on CPT11 (along with Erbitux) for very many years. At first I'd have some trouble with diarrhea after a few days and I'd take Imodium for it and I'd be fine. I did suffer from pretty intense stomach cramps but I/we figured it was due to too much anti-nausea meds. I switched to marihuana for the nausea and it also helped tremendously with my appetite.

I understand there's a "stigma" attached to marihuana but it's been used for thousands of years to treat many things. Big Pharm can't replicate it even though they've tried...

tabbyfatgirl1's picture
Posts: 17
Joined: Nov 2011

Hi PhillieG,

Thanks for your post.  I'm so glad to hear you've been on this chemo for a long time (not that I mean glad you have to take it for cancer - that just didn't come out right) - that gives me a better feeling about it.  I think you are right about marijuana - I' ve heard it does increase appetite.  We very well may have to look into a prescription for it.  He did take Dranabinol (not spelled right) - it really didn't help too much.  Guess you are right about Big Pharm.

God bless you!

Jolene & Paul


Posts: 2215
Joined: Oct 2011

Some people do well on it. Others dont. unfortunately it sounds your husband like me struggles with lt. I have done 14 rounds of it. Some easier than others. There was one time last year where like your everything went right through me in a matter of 30 minutes. None of the antidiarheals helped. I finally had to stop eating and drinking and go to the hospital to get IV fluids.

marbleotis's picture
Posts: 715
Joined: Mar 2012

For the chemo-diarrhea what helped me was what a nurse told me.  It is the BRAT diet.  B = banannas, R=rice, A= apple sauce, T= toast.  all in small amounts on a place.  It was gentle and good nutrition.  Remember small amounts almost like what I called "toddler size".  It really helped me along with the Rx's.

AnnLouise's picture
Posts: 276
Joined: Mar 2013

I haven't been on that particular chemo but not being able to eat or drink is somewhat universal to many chemos. Two things that I try to drink are aqua hydrate water from GNC and Ensure Clear (blueberry pomegranate). The water has electrolytes and the ensure clear is not as thick as Boost or the regular Ensure. Also try and use a straw when possible. If I can think of anything more , I will add to my post. Good luck and remember little sips every half hour. I do understand what you are going through...  ~Ann

thxmiker's picture
Posts: 1282
Joined: Oct 2010

Oatmeal has helped me a lot!  It helps slow down the bowl movements and allows nutrients to be absorbed.  


Juicing also helps!  Now he can get readily available nutrients via the juice.  I use carrots and greens with a clove of garlic.  Celery, Swiss Chard, Kale etc...  When I get depleted a glass of juice really helps pick me up, both in my spirits and physically.  (Jack laLane Juicer at Walmart is $100 and quiet.  I use a Hurom Verticle Feed Juicer, extremely quiet.) 


Ginger helps the nausea. Gignger cookies, dried ginger root, and strong ginger tea. (I hope he likes ginger.  lol)  The Nausea is still persistent, but the ginger makes it tollerable. 


Baby Wipes and Calmoseptine helps the bottom end burn. Brings it to tollerable at best. 


Many times I eat a second lunch and second dinner, because of the depletion. Depending on what study one wants to believe, between 40% and 60% of cancer patients sucumb to poor nutrition before the disease gets them. I would believe the higher number. I ended in the hospital twice during the first 12 rounds of chemo. I let myself get dehydrated due to the pain of the bowl movements. I will not let that happen again.  I watch my weight for hydration.


Just my thoughts,  

Best Always,  mike

barbebarb's picture
Posts: 464
Joined: Oct 2011

J -
This is my third round. I try to eat smaller meals throughout the day and pack in protein foods as much as possible.
Also try immodium to stay ahead of bowel issues.
Hydration is very important and I squeeze lemon or lime in bottled water.
I have to line them up day of and after infusion to psycho myself out. Dumb huh?

I am sorry your husband is being challenged with this chemo.

It has been better than oxaliplatinin for me. I literally had no appetite.
There is an appetite stimulant drug but I did not take it.

Would an Ensure smoothie with ice cream appeal to him?

Usually by the third day after infusion my appetite is better but delayed response
for bowel issues.I have to use Immodium and Seneca S depending on how my system reacts.

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