5Fu Side Effects

My husband was recently diagnosed with stage 3 rectal cancer. He has been treated with 7 day continuous infusion of 5fu for 4 weeks. Right before the start of his 5th week, he was hospitalized with an inflamed small bowel due to the 5fu. I was told this is not a common side effect. Does anyone have information on this?

I was diagnosed with breast cancer and received my first dose of 5 FU on July 15th, 11 days later I was admitted to the hospital due to severe toxic reaction to the 5 FU, I was diagnosed with grade 4 (4 being the most severe level) - grade 4 leukopenia, thrombocytopemia, stomasitis, mucocitis, and diarrhea. I was in the hospital for 13-days, do not remember anything of the first week. My family was told I may not make it and supportive care was offered. Needless to say I did make it, however 4-weeks later I am still unable to what I had done prior to chemo due to fatigue. I was informed following this episode that it is very rare and they had never seen this type of reaction, and that I apparently had a deficiency in an enzyme called DPD which makes my body unable to metabolize the 5FU. Upon further research I found that approx. less than 5% of the population has this deficiency and those that do have had toxic reactions to 5FU, including death. I also found out there is a test for this enzyme, but was told by my oncologist it is not the standard of practice to test for DPD? I am in no way suggesting your husband has this enzyme deficiency, but I wanted to tell you about my experiance.

I do highly recommed anyone who is about to recieve 5FU discuss with your physician the effects of DPD and 5FU, the odds are in your favor you will not have this deficiency since less than 5% of the population does, but I can assure you if you are in that 5% you do not want to have 5FU, I am truely very lucky to be alive today.

I was diagnosed with colorectal cancer, stage 3, Nov. 2004. I had surgery to remove the polyp followed by chemo and radiation. 3/6 week rounds of treatment was recommended with 3 weeks off in between. They hooked me up with the 5FU pump and began radiation simultaniously for the first round. 3 weeks later I ended up in the hospital with an ileus, a shutting down of the intestines. This was due to the 5FU. Chemo was postponed until radiation treatments were finished. I then began 6 weeks of weekly infusions of 5FU. Again, after the third week I landed in the hospital with the same condition, an ileus, due to the 5FU. I was told this was unusual. There were also concerns about scar tissue forming at the re-attachment area. (They removed most of my rectum and several inches of my colon.) They felt this was contributing factor to the ileus along with the side effects of the 5FU. They went in and stretched open the scar tissue at the site of the re-attachment, as this area became so narrow, nothing was getting past. My oncologist stopped my treatments and that was it. They give me this drug that just about kills me and then don't give me any recommendations of what to do until my follow up visit in 6 months. 6 months!? I was supposed to wait 6 months to find out if the treatments worked? No nothing to inform you of what you may expect from the treatments except diahrria. It has been just about 5 months since my last treatment and I continue to have extreme diahrria. No one told me I would develop a continuous painful pressure in my bottom due to removing and how low the removal was of the rectum and colon or throbing spasms in the sphinxter area. Jennifer, I don't have any information, but these side effect from the 5FU seem to be more common then they say. Did they continue with treatments? Does your husband have a painful pressure at the bottom area? I wish you both nothing but the best as well as everyone who has had to or still is going through this nightmare! Did anyone receive information from their DR. about what to expect or do while I wait 6 months for a follow up??
Viv Liv

I live in the UK and was diagnosed with colo rectal cancer this
time last year. I had about a foot of my colon and a third of my
rectum removed. It turned out to be stage 4 cancer which had
reached my liver. Luckily this was operable and a recent CT
scan has shown my body as completely free from disease.

I have had 21 weekly treatments of 5FU with 3 remaining. I also
had an early resection due to the stoma retracting. I have had 8
bowel blockages since May just after the initial treatment
began and before they discovered it had gone to my liver. I
didn't realise that 5FU could be responsible for these.

Another distressing symptom is not exactly diarrhoea (tho I
have had that a few times) but very frequent passing of small
amounts of faeces which burn me as I pass them. At times it
feels like someone has poured acid into my anus. I also
frequently feel as if I want to "go" all the time. I wonder if this
is what you mean by pressure? When I have
discussed this at the hospital they say no one has ever reported
this and they blame the symptom on my bowel surgery.

Anyone else had this awful burning sensation? It really is
distressingly painful.

my wife had the same symptoms
have they told you any thing else
and their is a test my wife had one

Hi, I was diagnosed with stage IIIc rectal cancer in November. I had my surgery and on January 23, started my 5-FU treatment, combined with Radiation therapy. I sailed through the first two weeks, with no side effects. Then at about week 2-1/2, I got all the side effect; mouth sores, diarrhea, sore hands and feet. They took me off the Chemo, (I've been off for two weeks now) and stopped the radiation as well. The mouth sores and sore hands and feet are no longer a problem, but I still have not been able to get the diarrhea under control. My Onchologist thinks I may be one of 5% of the population that lacks the enzyme to process the 5-FU. I have not been hospitalized yet, but I've come close a few times. I am now lactose intolerant, (which I now hear is common after you've been on Chemo) as well. So, I have to be very cafreful what I eat. Even the Ensure drinks are a problem. The "BRAT" diet works well (Bananas, Rice, Apple sause and Toast) I got so bad this past week that I have Home Care coming to my house this weekend to hook me up to a Potasium IV drip for 6 hours for two days. They are also giving me injections 3x/day for the diarrhea. The doctors seem very surprised that the diarrhea has not gone away with Lomotil and Immodium alone. If I do lack this enzyme, I wonder if the Chemo has damaged my bowel somehow when my toxicity levels got too high. They keep telling me it will get better, but I really wonder. If I don't show progress after this weekend, my next plan is to talk to a GI specialist. Hopefully your husband has seen someone like that in the hospital. Good luck!

Recently, my Mother was hospitalized for 16 days from a reaction to 5FU. I can't believe how hard it has been on her body. I have reservations about what chemo they will give her next. Can you tell me what form of chemo they gave you after healing from the 5FU reaction? Your stories are amazingly similar.

i am efected with cancer in colon and after operation now my oncologist give me 5fu for 30 weeks and i have to start from next week but i am not sure should i take it or not
and i don't know is this long treatment is essential

My mother recently passed away after her first treatment including 5FU. She had one treatment, vomiting and diarrhea, admitted to the hospital 11 days after the treatment, and died 2 days later.

 Her white cell count was 300 when admitted, should have been in the 1000's. Her condition never improved after being admitted to the hospital. She apparently had a total shutdown of all internal organs except the heart and lungs.

We were told about the enzyme issue, but that there was no test for it. The 5FU should have only stayed in her system for 15 minutes, but the lack of an enzyme allowed it to stay for days, killing cells. We wonder if earlier admission to the hospital might have saved her life.

She also had eczema and arthritis. These are immune deficiency type diseases and perhaps others who lack the critical ezyme may also have some immune disease that could be associated with the missing enzyme.

May her soul rest with the LORD.

Hello,

My mom was recently diagnosed w/ rectal cancer. She too is on the 5fu treatment along w/ radiation. She is into almost the 3rd week of the first round of chemo. Started out okay, just extremely tired. More recently, has had severe diarrhea, sore throat, swollen hands and feet, having trouble eating & drinking, and having a very hard time getting out of bed. It was brought to the attention of the Dr. and they rehydrated her for about 2 hrs. Also, they are stopping the chemo for a week (but still continuing the radiation) and will start again next week on a lower dose.  After reading the similar stories on this site, I advised my sister who has been in contact w/ the Dr. She asked the Dr. about my mom possibly being in this 5% of the population that cannot tolerate the 5fu, but the Dr. said she prescribed my mom folic acid, so this should not be an issue. Does this sound right or should we be pushing the issue further? They stopped the chemo yesterday, but she is still feeling the same. She was diagnosed with Type 1 so we really didn't expect her to be feeling this ill.