CancerCompass message board discussion started by Jenann on 5/25/2005 http://www.cancercompass.com/message-board/message/all,2142,0.htm Fri, 05 Dec 2008 00:00:00 GMT Fri, 05 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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? Jenann Wed, 25 May 2005 00:00:00 GMT 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. Maryl Wed, 07 Sep 2005 00:00:00 GMT 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 Viv Liv Thu, 06 Oct 2005 00:00:00 GMT 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. Elainec Wed, 28 Dec 2005 00:00:00 GMT my wife had the same symptoms have they told you any thing else and their is a test my wife had one Justroy Thu, 12 Jan 2006 00:00:00 GMT 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! Morgana Sat, 25 Feb 2006 00:00:00 GMT 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. Krannert Mon, 24 Apr 2006 00:00:00 GMT 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 Anwar Ali Fri, 28 Jul 2006 00:00:00 GMT 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. ed Tamu86 Sun, 24 Dec 2006 00:00:00 GMT 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. Questions2ask Wed, 17 Jan 2007 00:00:00 GMT  On 1/17/2007 Questions2ask wrote: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. Hello, I sympathize with the worry you must be going through.  My dad passed away last year after just one treatment of 5fu.  It is believed that my dad was missing the enzyme that doesn't allow the chemo to process through the body and it basicly poisoned him to death.  I don't want to scare you with the details of what happened to him but  getting the most information you can will help you in making decisions as to what is best for your mom.  My dad was in the hospital within a week of his first chemo treatment and deteriorated very quickly after that.  Within the next week he was in a coma, followed shortly by life support system and had passed away the following week.  In all the research we did,  and we called doctors in the US and in Europe, there is absolutely nothing that can be done once the body refuses to process the chemo through the body, so I have never heard the story that folic acid will help.  I understand that  everyone can react to the drug differently and it is a matter to what degree someone will just get sick or will have the enzyme deficiency. So folic acid may help some patients but it will not help patients with the enzyme deficiency.  One thing I would recommend is to watch over your mom's white blood cell count, if it builds itself back after the chemo that should be seen as a good sign.  And continue to ask questions,  I wished we had.    Jmwcal Mon, 22 Jan 2007 00:00:00 GMT Hi Jmwcal, thank you for replying . I am sorry to hear about your dad. That is just horrible, especially when this stuff is supposed to help, not further hurt!  My mom started back on the chemo again today at a lower dose. She still has not completely worn off the first round yet, extremely tired all the time. The swelling of her hands and feet went down though. Mouth is getting better. She stays in bed all day. The visiting nurse came today and is concerned about her blood pressure (low) and also she is dehydrated again. There is a call in to the dr. I have to say, I don't really have the upmost faith in this Dr. so far. I tried to talk my mom into seeing someone else and getting a different opinion, but she doesn't want to. I am really concerned, because I didn't expect any of this. I thought stage 1 would be good news, and she wouldn't have to suffer all that much. I can' t imagine what it would be like w/ any other advanced stages. Do I have this all wrong? My thoughts are w/ you.   Questions2ask Wed, 24 Jan 2007 00:00:00 GMT  On 1/24/2007 Questions2ask wrote:Hi Jmwcal, thank you for replying . I am sorry to hear about your dad. That is just horrible, especially when this stuff is supposed to help, not further hurt!  My mom started back on the chemo again today at a lower dose. She still has not completely worn off the first round yet, extremely tired all the time. The swelling of her hands and feet went down though. Mouth is getting better. She stays in bed all day. The visiting nurse came today and is concerned about her blood pressure (low) and also she is dehydrated again. There is a call in to the dr. I have to say, I don't really have the upmost faith in this Dr. so far. I tried to talk my mom into seeing someone else and getting a different opinion, but she doesn't want to. I am really concerned, because I didn't expect any of this. I thought stage 1 would be good news, and she wouldn't have to suffer all that much. I can' t imagine what it would be like w/ any other advanced stages. Do I have this all wrong? My thoughts are w/ you.  My father was diagnosed with Stage 4 throat cancer in August. He went through seven weeks of chemo and radiation and then was given a few months off. Last Monday, they started him on another round oh chemo, this time to include 5fu. By Friday his throat was covered in sores and he could no longer eat and drink. They took him to the ER on Saturday and they rehydrated him but he was not improving. After two days at the cancer center trying to help him feel better, they admitted him to the hospital last night with a white blood cell count of 0.1. It's supposed to  be between 4.0 and 10.0. Today, his platelet count is down to 16. If it drops any lower they are going to do a transfusion. He is not getting any better other than the hydration. After reading these postings, I'm concerned. Any information that you could provide would be great. If anyone has had a family member or has gone through these exact symptoms, I would really like to know the outcome. Thanks.   Melissakg1 Wed, 24 Jan 2007 00:00:00 GMT I had a cancerous tumor removed from my colon, and within a month was placed on 5-fu infusions once a week. (4 weeks on, two weeks off) I had no side effects other than feeling tired and run down, but I went back to work (high school teacher) and continued my summer job (painting houses) My doctor closely monitored my blood closely, and kept me informed that my blood count would rebound during the weeks I was off treatment. I was very confident that the doctors and nurses would catch any problems. The enzyme deficiency is something I don't remember hearing about. Right now I am feeling very lucky to have gotten away with so few problems. I am cancer free for three years and expect to get a good report when I see the doc tomorrow. Hang in there. Joemac53 Mon, 30 Apr 2007 00:00:00 GMT  On 4/30/2007 Joemac53 wrote:I had a cancerous tumor removed from my colon, and within a month was placed on 5-fu infusions once a week. (4 weeks on, two weeks off) I had no side effects other than feeling tired and run down, but I went back to work (high school teacher) and continued my summer job (painting houses) My doctor closely monitored my blood closely, and kept me informed that my blood count would rebound during the weeks I was off treatment. I was very confident that the doctors and nurses would catch any problems. The enzyme deficiency is something I don't remember hearing about. Right now I am feeling very lucky to have gotten away with so few problems. I am cancer free for three years and expect to get a good report when I see the doc tomorrow. Hang in there.Thank you Joemac53, My father was DX with colon cancer 4 weeks ago.  We already have had the surgery to remove the tomor.  He was re-diagnosed with rectum cancer (due to the location of the tumor), and stage 3.  He is going to start Chemo in about 3-4 weeks... he is going to be on one week off for 3, on for 1 week off for three, and then he is going to on for 6 weeks with radiation (for 5 minutes for 5 days a week.)  You had the only e-mail so far with out sever side effects.  I was getting very scared with 5FU, and wondering if my father should get more information.I prey and hope that the Dr has nothing but good news for you in the future.  Thank you again for the little peace of hope.Natalie Catnat Sat, 16 Jun 2007 00:00:00 GMT My son was diagnosed with rectal cancer at age 34 in May of 2004. He had chemo and radiation, then surgery and had his rectum removed. After two months, they gave him aggressive 5FU. After the 3rd or 4th treatment, he was admitted into the hospital where he stayed from Halloween to New Year's Eve. He was so sick from the 5FU -- he lost the skin off of his hands and feet in large sheets, he had mouth sores, and could hold very little down by mouth. He had an ileostomy and what little food he at went directly into his bag without being digested. After he lost the lining of his bowel into the bag (a direct side effect from the 5FU), the only thing he had by mouth for the remaining 6-7 weeks was ice chips and popsicles. The lining eventually regenerated itself and he was able to start digesting food. In January, he had his ostomy reversed, and in June his cancer spread to his liver. He had 20% of his liver removed and a year later, it had spread to his lungs. Last month, he started low dose oral 5FU, IV oxaliplatin and Erbitux. The side effects of the Erbitux (horrible acne rash on scalp and face) gave him an infection and a temp of 103. They stopped the Erbitux and are going to replace it with Avastin when his symptoms clear up. 5FU is a powerful chemotherapy, and I pray that it does the same job on his tumors that it does on his body. Scrapper13 Thu, 05 Jul 2007 00:00:00 GMT I was diagnosed with stage IIB colon cancer, had surgery and a series of treatments (Folfox) which is a combination of 5FU Elotaxin (sp) and Leucovarin. I was lucky to have had minimal side effects.  I received the chemo two days a week coming home with a portable pump infusing 5FU in a small dose after the first and second days of treatments and having the pump discontinued on the 3rd day every 2 weeks for a total of 12 treatments. My main side effect was fatigue with minor side effects of a strange taste in my mouth and numbness in my hands and feet.  I was able to work (a nurse) except the days I received my treatments.  After reading the postings here, I feel very lucky. I had a great group of doctors who carefully monitered by blood work, and did everything in their power to minimize the side effects.  I had to delay some treatments due to low blood counts.  So far my scans have been good 6 months after treatments. Definately ask your doctor any questions you have and if necessary look into getting a second or third opinion.  I was searching this site to get information for a friend who is having severe side effects from 5FU treatments currently.  His story is the same as some of yours and I will keep all of you in my thoughts and prayers. Donna Louise Mon, 13 Aug 2007 00:00:00 GMT Hi, I recently found out I had colon cancer & had the tumour cut out 9 weeks ago.  I now have the choice of taking a course of 5fu for 30 weeks by injection like you.  I don't know whether I should or not & would be very interested to see if you took it or not?  My cancer was a B grade (stage 2 I think).Thanks Maria Maria C Mon, 21 Jul 2008 00:00:00 GMT  On 7/28/2006 Anwar Ali wrote: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 essentialHi Anwar Ali, I too have been diagnosed with colon cancer (stage 2) & had the tumour cut out 10 weeks ago.  The told me I could have 5fu injections for 30 weeks but I don't think they thought it would be worth it (only a 3% chance of improvement & they think the surgery will have been succesful).Did you take the 30 week treatment?  Was it by injection? What stage cancer did you have & did the treatment give you bad side effects?Thanks Maria Maria C Thu, 31 Jul 2008 00:00:00 GMT  On 7/28/2006 Anwar Ali wrote: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 notand i don't know is this long treatment is essentialWell im sorry to hear that . I am on the same treatment plan and things are going well for me . I am on 5fu and mytomysin & radiation and I know its a drag . Im having to go to the hospital mon thu fri for 8 weeks or more and treatment would be your best bet unless you want to it to spread . THery gave me an option to get this treatment or to have surgery and if I went the surgery route there was a 98 % chance that I would end up with a colostomy bag permentantly and that is the last thing anyone would like to go through. My mother had that and it made her miserable til her last day on earth. Hope this helps you out ... Good luck   2trippy Wed, 17 Sep 2008 00:00:00 GMT  On 7/21/2008 Maria C wrote:Hi, I recently found out I had colon cancer & had the tumour cut out 9 weeks ago.  I now have the choice of taking a course of 5fu for 30 weeks by injection like you.  I don't know whether I should or not & would be very interested to see if you took it or not?  My cancer was a B grade (stage 2 I think).Thanks MariaWow, , It seems like there are many of us that have the same degree of cancer. I myself that because my tumor was a certain size that it placed me on stage 2 and I chose to have the 5fu hooked to a pump in a bag that I carry with me  all the time and I go to the ITA department  on mondays to have my bag changed an d my radiation treatment is everyday and takes only 10 to 15 minutes . I chose to carry the pump and chemo around instead of having to go in everyday for and sit there for hours at a time. The treatment is not as bad as many of you all think it is.I pray that you make the right decisions so that the cancer can be controlled properly. Hope you get through your delema .God Bless You,Joe   2trippy Thu, 18 Sep 2008 00:00:00 GMT  On 5/25/2005 Jenann wrote: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 wondering if you are sure that was from the 5FU ? Is he also having Radiation treatment. If so as far as I know the radiation is what I was told would have the side effect and not from the 5Fu. I  am on 5fu and mytomysin which I get every four weeks and radiation from mon thru fri every week . I know it sounds like a big hassle ,but it really isnt. Hope that this helped you in any way. Praying for your husband...God Bless You both.Joe     2trippy Thu, 18 Sep 2008 00:00:00 GMT Hi Joe, thanks for replying to my message.  As I was considered "young" (nice to be called young at 43!) for this type of cancer they didn't think it necessary for me to have the 5FU.  As my chances were only going to be improved by 3% & I am otherwise healthy they seemed to think it was just bad luck I got it & thought I would have just as much chance of improvement through exercise, healthy eating etc.  On this basis I decided not to have the chemo.We're just coming into summer here (I'm in New Zealand) so I'm looking forward to getting out for lots of walks!Hope all is going well with your treatment & I wish you all the best in the future.  Thanks for taking the time to respond to my messageRegardsMaria   Maria C Tue, 30 Sep 2008 00:00:00 GMT