GI issues with Chemo (specifically Irenotecan)

phuckcancer

 

Hi everyone,

I haven't posted in a long while, honestly I have just been overwhelmed. My hubby (stage4 colon with mets to liver and now lungs, dx April 2016) was doing chemo with Avastin every two weeks from April 2016 until approx Aug 2016.. they gave him about a 3 week break and then moved him to  chemo with Irenotecan (due to the worsening neuropathy). He has also had to move to an every 3 weeks (currently) chemo regimen due to very low platelet counts..he's also had blood clots in the lungs and a week ago a blood clot in the leg.

His GI issues are awful, he feels imprisoned at home because of the overwhelming and urgency to use the restroom, the pain is awful... a gut wrenching, twisting and sometimes painful shooting pain. There is also burning .. he is so miserable and we have tried everything to help. Last Dr's visit we asked about the burning and pain and how it was related to the chemo possibly (possibly specifically ireno..) and was told the diarrhea may be but the other could be the hemorrhoid.

My question for you all .. is... have you experienced this burning and excruciating pain? did you find it was related to one drug versus another?

He is adamant he cannot continue feeling like this and talking about stopping some or all of treatment and that scares me

Any info you are willing to share is appreciative! I have read that this could def be a side effect but looking for some real life thoughts.

 

PhillieG

Irinotecan

Sorry to hear this. It's not an easy road to travel.
I was on that and Erbitux for a very long time. About 6 or 7 years. I remember going between not being able to poop and not being able to stop pooping. There were some nasty cramps as well. I tracked my side effects for a while and noticed a pattern. What I found to help with the diarrhea was to take Immodium before "it" started and it helped quite a bit. The with the cramps, I took stool softeners. It helped but I still had times when I felt like throwing in the towel.

 Also, I had a slight break in treatment a few years ago due to lung/breathing issues. when I was going back on chemo, my oncologist offered me the Irinotecan/Erbitux option, or Xeloda which is an oral chemo. Some people have good results with it and sometimes the side effects are not as bad - or they are different. I've been on that for 3+ years and it's kept my lung tumors stable. The side effects aren't nearly as bad (for me).

Maybe have him run this by his oncologist? 
-p

Woodytele

Immodium

The Dr.s have prescribed me all kinds of drugs for diarrhea and I've found Imodium ( you can buy it anywhere) to be quite effective at slowing everything down.  I also get that urgency, and if I do nothing Im going probably 15 times a day which is exhausting, then you get hemorrhoids and pain.  I give myself about 3 bathroom visits, then I take the Imodium to stop the rest. 

phuckcancer

PhillieG said:

Irinotecan

Sorry to hear this. It's not an easy road to travel.
I was on that and Erbitux for a very long time. About 6 or 7 years. I remember going between not being able to poop and not being able to stop pooping. There were some nasty cramps as well. I tracked my side effects for a while and noticed a pattern. What I found to help with the diarrhea was to take Immodium before "it" started and it helped quite a bit. The with the cramps, I took stool softeners. It helped but I still had times when I felt like throwing in the towel.

 Also, I had a slight break in treatment a few years ago due to lung/breathing issues. when I was going back on chemo, my oncologist offered me the Irinotecan/Erbitux option, or Xeloda which is an oral chemo. Some people have good results with it and sometimes the side effects are not as bad - or they are different. I've been on that for 3+ years and it's kept my lung tumors stable. The side effects aren't nearly as bad (for me).

Maybe have him run this by his oncologist? 
-p

@Phillie

thank you for your info! I am going to bring up the Xeloda and see if that is an option. I have heard a little about it and anything can be asked

phuckcancer

Woodytele said:

Immodium

The Dr.s have prescribed me all kinds of drugs for diarrhea and I've found Imodium ( you can buy it anywhere) to be quite effective at slowing everything down.  I also get that urgency, and if I do nothing Im going probably 15 times a day which is exhausting, then you get hemorrhoids and pain.  I give myself about 3 bathroom visits, then I take the Imodium to stop the rest. 

@woody

thank you for replying!  He does take the imodium (thank goodness) but he stops taking it in fear of getting too constipated (memories of pre diagnosis and the irritation to the rhiod).
dang, it's such a vicious cycle!

Bellen

Avastin + folfiri

Part of my folfiri chemo cocktail is Irinotecan.  I have had 14 sessions - having one treatment break right now.  I have had chronic constipation for several yrs - also a small intestinal stricture, which causes partial blockages.  When they administer the irinotecan, I have a shot of atropine and after 45 min I have another atropine shot.  It is to help control cramping that is caused by irinotecan. I wonder if he could be prescribed something like atropine for cramping.  My stomach feels pretty much crappy all throughout, and that may be the irinotecan, although I go from constipation to diarrhea and have a hard time to regulate - because back at the chemo really 12 days later (if count the 5Fu on for 2 days).  My platelets are low also, and I have had more days of being out of breath.  Had a blood tranfusion about a month ago.  But still had 3 days this time of being out of breath when doing simple things.  So I think this break is very much needed.  Wishing your husband luck in getting some relief.  

lizard44

Irinotecan

Sorry to hear your husband is having such a hard time with the chemo. I've  been on a combination of  Erbitux and irinotecan for a year now on an every-other-week schedule and so far haven't had  a lot of problems  other than the skin, nail and  hair problems from the Erbitux. Like Bellen, I receive  an Atropine injection  before they begin infusing the irinotecan and it seems to have a  positive effect. I've noticed, though, that I sometimes begin to get loose bowels about a week after the treatment, but if I take a dose of Imodium at the first sign it seems to keep it under control and I rarely need a second dose. I also began keeping a food  diary to see if  there was a pattern of certain foods that triggered  bouts of diarrhea, so now I  watch my diet quite carefullly. I don't eat any fried or greasy food,  or  raw vegetables or fruit, except for bananas and avocados, and avoid  foods that cause gas like broccoli, cabbage, etc. although I do love Brussells sprouts and am  occasionally willing to pay the price for indulging, although I've noticed if I roast them instead of boiling or steaming them,  they  don't cause as many problems. ;-) I eat  chicken or fish and rarely eat pork or beef, I don't drink  carbonated beverages, but drink  a lot of water.  I had read that  caffeine and alcohol  can  cause diarrhea while on chemo, but it doesn't seem to affect me adversely so I do drink tea and coffee  and have an occasional glass of wine. I have begun  drinking lactose free milk, but  yogurt  doesn't bother me and I eat yogurt and take a probiotic daily. I try not to eat  too much sugary food but  haven't cut out  sweet treats  entirely,  as I began treatment  very much underweight, which worried my oncologist.  I have managed to gain eight or ten pounds, so we're all pleased with that. I don't get cramps too often, but when I do I've found that a heating pad on my abdomen helps. I've also found that I do better when I remain active so try to keep moving as much as possible.  I do gentle yoga and attend a weekly yoga class, and now spring is here I get out and work in the  garden when the weather allows.

Everyone has different  reactions to treatment, and what works for one person might not  work for another.  but I hope you and your  husband are able to find something that works for him.

Grace/lizard44

danker

phuckcancer said:

@woody

thank you for replying!  He does take the imodium (thank goodness) but he stops taking it in fear of getting too constipated (memories of pre diagnosis and the irritation to the rhiod).
dang, it's such a vicious cycle!

Diarrhea

A stronger stop to diarrhea is LOMOTIL.  You need a prescription for it, but it works well!  Good luck to all who need it!

phuckcancer

danker said:

Diarrhea

A stronger stop to diarrhea is LOMOTIL.  You need a prescription for it, but it works well!  Good luck to all who need it!

@danker

Thank you... we do have a prescrip for that as well

phuckcancer

Bellen said:

Avastin + folfiri

Part of my folfiri chemo cocktail is Irinotecan.  I have had 14 sessions - having one treatment break right now.  I have had chronic constipation for several yrs - also a small intestinal stricture, which causes partial blockages.  When they administer the irinotecan, I have a shot of atropine and after 45 min I have another atropine shot.  It is to help control cramping that is caused by irinotecan. I wonder if he could be prescribed something like atropine for cramping.  My stomach feels pretty much crappy all throughout, and that may be the irinotecan, although I go from constipation to diarrhea and have a hard time to regulate - because back at the chemo really 12 days later (if count the 5Fu on for 2 days).  My platelets are low also, and I have had more days of being out of breath.  Had a blood tranfusion about a month ago.  But still had 3 days this time of being out of breath when doing simple things.  So I think this break is very much needed.  Wishing your husband luck in getting some relief.  

@bellen

thank you ! I am going to ask his dr this week about that drug. That could be very helpful for him. It realy keeps him at home and I just hate that he feels like he cant do anything

phuckcancer

lizard44 said:

Irinotecan

Sorry to hear your husband is having such a hard time with the chemo. I've  been on a combination of  Erbitux and irinotecan for a year now on an every-other-week schedule and so far haven't had  a lot of problems  other than the skin, nail and  hair problems from the Erbitux. Like Bellen, I receive  an Atropine injection  before they begin infusing the irinotecan and it seems to have a  positive effect. I've noticed, though, that I sometimes begin to get loose bowels about a week after the treatment, but if I take a dose of Imodium at the first sign it seems to keep it under control and I rarely need a second dose. I also began keeping a food  diary to see if  there was a pattern of certain foods that triggered  bouts of diarrhea, so now I  watch my diet quite carefullly. I don't eat any fried or greasy food,  or  raw vegetables or fruit, except for bananas and avocados, and avoid  foods that cause gas like broccoli, cabbage, etc. although I do love Brussells sprouts and am  occasionally willing to pay the price for indulging, although I've noticed if I roast them instead of boiling or steaming them,  they  don't cause as many problems. ;-) I eat  chicken or fish and rarely eat pork or beef, I don't drink  carbonated beverages, but drink  a lot of water.  I had read that  caffeine and alcohol  can  cause diarrhea while on chemo, but it doesn't seem to affect me adversely so I do drink tea and coffee  and have an occasional glass of wine. I have begun  drinking lactose free milk, but  yogurt  doesn't bother me and I eat yogurt and take a probiotic daily. I try not to eat  too much sugary food but  haven't cut out  sweet treats  entirely,  as I began treatment  very much underweight, which worried my oncologist.  I have managed to gain eight or ten pounds, so we're all pleased with that. I don't get cramps too often, but when I do I've found that a heating pad on my abdomen helps. I've also found that I do better when I remain active so try to keep moving as much as possible.  I do gentle yoga and attend a weekly yoga class, and now spring is here I get out and work in the  garden when the weather allows.

Everyone has different  reactions to treatment, and what works for one person might not  work for another.  but I hope you and your  husband are able to find something that works for him.

Grace/lizard44

@lizard

thank you so much for the info! we may have to try out the diet items and see if that could also be affecting him