Has anyone had chemo-induced colitis?

Posted by valerina30 @valerina30, Sep 17 9:57am

Has anyone had chemo induced colitis? I had 5 treatments so far and my red blood count went down real low. Had cat scan, said tumor on pancreas shrunk but there’s tissues around it and he thinks that may be from colitis. So skipping chemo next week. Not sure what happens now

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Hi @valerina30, I expanded the title of your discussion and added it to the Cancer: Managing Symptoms support group as well. I'm tagging a few members like @pattycincinnati @sansa @astaingegerdm @susannac @elizabethc0394 who have had to manage cancer treatment and colitis.

Valerina, was chemo delayed due to low red blood cells or the colitis (or both)? How are you doing?

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Hi - I had gotten colitis from taking Keytruda (an immunotherapy drug), not from taking chemotherapy. I did take both, at the same time and then just chemo separately. I was one of a very small percentage who got that type of side effect from Keytruda. My intestines became very inflamed so had to then take a steroid which helped to an extent but it persisted so I went to the hospital and was there for five or six weeks. Very painful for my stomach as well so had to take morphine to get through all that - lost a lot of weight - could not eat a thing. Eventually things cleared up as Keytruda does have a long half like so in other words even though I was taken off it the drug was still operating in my system.

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Profile picture for Colleen Young, Connect Director @colleenyoung

Hi @valerina30, I expanded the title of your discussion and added it to the Cancer: Managing Symptoms support group as well. I'm tagging a few members like @pattycincinnati @sansa @astaingegerdm @susannac @elizabethc0394 who have had to manage cancer treatment and colitis.

Valerina, was chemo delayed due to low red blood cells or the colitis (or both)? How are you doing?

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Hi, yes they put the chemo on hold as well as the blood thinner because I was bleeding in my stools. After I got to hospital I had to get 4 bags of potassium and 2 bags of blood transfusion. Next day 2 more bags of potassium and 2 bags of magnesium . My levels were considered critical they were so low. The only pain I really had before I went in hospital was chest pain an high heart rate when I walked from one room to the next. After the blood transfusion that pain went away. I was on a very aggressive chemo treatment had just finished my 5th treatment. Only good thing was the tumor did shrink some an I’m hoping they can do surgery to remove it. Now I’m scared to even go back to chemo if it’s gonna mess me up like that. Going to get in touch with surgeon and hope he can do surgery very soon. As of right now I feel pretty good. Sometimes I wonder if going thru chemo is even worth it. Quality over quantity ? Will update!

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Profile picture for susannac @susannac

Hi - I had gotten colitis from taking Keytruda (an immunotherapy drug), not from taking chemotherapy. I did take both, at the same time and then just chemo separately. I was one of a very small percentage who got that type of side effect from Keytruda. My intestines became very inflamed so had to then take a steroid which helped to an extent but it persisted so I went to the hospital and was there for five or six weeks. Very painful for my stomach as well so had to take morphine to get through all that - lost a lot of weight - could not eat a thing. Eventually things cleared up as Keytruda does have a long half like so in other words even though I was taken off it the drug was still operating in my system.

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Wow so sorry to hear you went thru all that ! How are you doing now? Did you have any surgery? Only thing good was my tumor shrunk. Hopefully enough for surgery to get it out. After that if they got all cancer I’m thinking of going holistic . There’s a lot of good things out there from nature , and I had been doing several along with the chemo. Maybe that helped me in the long run. I was only in hospital for 2 days, after the blood transfusion (2 bags) and 6 bags of potassium and 2 bags of magnesium. Crazy! Now chemo is on hold and I’m scared to really go back on it!

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Hi Valerina30,
Yes, the last scan done in July showed "chemo induced colitis", mild. I wasn't really having symptoms though and was told by the medical team it's common. It didn't interfere with the old Folfirinox schedule. We kept going. I did take a look at my diet because I don't want it to become an
issue. I'm sorry you are going through all that, best wishes and yes, I am constantly trawling for holistic advice to balance the effects of the chemotherapy.

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Hi Valerie, I am completely fine now. The colitis did resolve soon enough but that was six years ago. I also take protonix every day which seems to help too as I had gotten some ugly ulcers at that time too. I did not have surgery, just radiation and the Keytruda and chemo for a metastis in my thigh muscle which as far as I know is just dead tissue now. I want to caution you about going holistic as I have heard of too many tragedies from going that route. The protocol the doctor gave you is most likely the agreed protocol for your type of cancer and this is preferred as it produces good results and comes from the results of thousands of people before you. I had gotten lots of potassium and magnesium also when in the hospital - the diarrhea takes out your electrolytes so you need that help. Your doctor should be able to advise you on what to do about the colitis and if not get a colonoscopy and endoscopy and have a GI doctor get involved. From being in the hospital that one time I got CDiff which also gives diarrhea and had to take antibiotics to resolve that infection. Yes see a GI doctor and get checked right away to confirm the colitis diagnosis. Question - will Keytruda help you? It seems to get a great way to get rid of cancer. Keep in touch please and best of luck in your decisions -

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Profile picture for anne7573217 @anne7573217

Hi Valerina30,
Yes, the last scan done in July showed "chemo induced colitis", mild. I wasn't really having symptoms though and was told by the medical team it's common. It didn't interfere with the old Folfirinox schedule. We kept going. I did take a look at my diet because I don't want it to become an
issue. I'm sorry you are going through all that, best wishes and yes, I am constantly trawling for holistic advice to balance the effects of the chemotherapy.

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So you kept doin chemo and no issues with the colitis? I talk to surgeon Thursday and pray he says I can do surgery. What kind of foods are you eating? I do eat fruit an veggies to try to keep my nutrients up. Even drinking aloe juice which isn’t bad. Weird thing is I never really had any pain thru this whole ordeal! I wish you the best as well. Let’s beat this shit!

REPLY
Profile picture for susannac @susannac

Hi Valerie, I am completely fine now. The colitis did resolve soon enough but that was six years ago. I also take protonix every day which seems to help too as I had gotten some ugly ulcers at that time too. I did not have surgery, just radiation and the Keytruda and chemo for a metastis in my thigh muscle which as far as I know is just dead tissue now. I want to caution you about going holistic as I have heard of too many tragedies from going that route. The protocol the doctor gave you is most likely the agreed protocol for your type of cancer and this is preferred as it produces good results and comes from the results of thousands of people before you. I had gotten lots of potassium and magnesium also when in the hospital - the diarrhea takes out your electrolytes so you need that help. Your doctor should be able to advise you on what to do about the colitis and if not get a colonoscopy and endoscopy and have a GI doctor get involved. From being in the hospital that one time I got CDiff which also gives diarrhea and had to take antibiotics to resolve that infection. Yes see a GI doctor and get checked right away to confirm the colitis diagnosis. Question - will Keytruda help you? It seems to get a great way to get rid of cancer. Keep in touch please and best of luck in your decisions -

Jump to this post

Hi, what is protonix? Is that like a probiotic? I took probiotics daily and drank kombucha which I think saved my stomach a lot. No mention of keytruda so far. I’ve hear good and bad things about that. I had colonoscopy and a endoscopic done before chemo an colonoscopy was fine a the endoscopic was to see the stage of cancer which was 1b of body/tail of pancreas. Seeing surgeon Thursday and hope it’s a go for surgery. I’ll still do some holistic stuff as long as it don’t interfere with any medications.ill keep you updated and thanks for the info!

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Profile picture for valerina30 @valerina30

So you kept doin chemo and no issues with the colitis? I talk to surgeon Thursday and pray he says I can do surgery. What kind of foods are you eating? I do eat fruit an veggies to try to keep my nutrients up. Even drinking aloe juice which isn’t bad. Weird thing is I never really had any pain thru this whole ordeal! I wish you the best as well. Let’s beat this shit!

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I kept doing chemo, reportedly I am tougher than a three dollar steak. I didn't have any pain either. I eat whatever I can find that tastes good but avoiding raw veggies and drinking a lot of V8 and I make sure to eat yogurt, and I make my own trail mix, and I have taken up malts. I will also admit that beer seems to settle my gut, IPA's and sours in moderation. Yes! Your attitude is fantastic and you can do this!

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Profile picture for valerina30 @valerina30

Hi, what is protonix? Is that like a probiotic? I took probiotics daily and drank kombucha which I think saved my stomach a lot. No mention of keytruda so far. I’ve hear good and bad things about that. I had colonoscopy and a endoscopic done before chemo an colonoscopy was fine a the endoscopic was to see the stage of cancer which was 1b of body/tail of pancreas. Seeing surgeon Thursday and hope it’s a go for surgery. I’ll still do some holistic stuff as long as it don’t interfere with any medications.ill keep you updated and thanks for the info!

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@valerina30 Hi - protonix is a proton pump inhibitor - in other words it reduces stomach acid which can be helpful if hoping to cure ulcers. That though may not be your problem though.

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