5fu Side Effects

 

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. 

 

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.  

 

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.

 

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.

 

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

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.

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.

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

 

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 essential

Hi 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

 

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 essential

Well 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