5FU side effects

Miller79

I am the caregiver for my husband(colorectal cancer Mets to the liver). He is on 5FU and the side effects are horrible. Severe abdominal pain, vomiting and diarrhea. We have reached out to his oncologist but only get, “it’s the chemo”, “go to the ER”. We have been to the ER 3 times in 3 weeks. He has lost over 30 lbs in the last month. ER is a 6-8 hour ordeal. They get him hydrated and give morphine then send us home. I am beyond frustrated in not being able to fix this for him. He should be enjoying life not struggling everyday:(( I have thought about driving to MD Anderson and begging for someone’s help but I don’t want to make the trip if they will just turn him away.

-FRUSTRATED WIFE

Trubrit

This is just awful! 30 lbs is allot of weight to lose, and it is no wonder he is dehydrated.

At his next appointment you must make sure you talk, face to face with the Oncologist, and tell them that this cannot go on, even if it means stopping the 5FU.

He is at the point, if the Cancer doesn't kill him, the treatment will.

I hope that there is a resolution to this problem, and soon. It is awful to go through as a patient, and traumatic to watch, as a caregiver.

Tru

Miller79

https://csn.cancer.org/discussion/comment/1712040#Comment_1712040

Agreed!!! He has an appointment on Tuesday, I am telling them that he needs a break from chemo. Quality of life is important.

NewHere

https://csn.cancer.org/discussion/327522/5fu-side-effects

Something to ask about is spacing the treatment more. I was on FOLFORI at one point, every two weeks. Basically did not feel great and would just start feeling better when it was time for next infusion. Studies had showed that there was not much difference in efficacy of every two weeks vs every three weeks. Switched to 3 weeks, made it easier in having some good days during the cycle. Also you may be able to drop the drug amount - I had that where dropping the dose changed things. Lastly, check on what premeds are being given with the treatment. Anti nausea meds/steroids and other things may help with the treatment.

Miller79

https://csn.cancer.org/discussion/comment/1712137#Comment_1712137

Thank you! We are meeting the dr tomorrow to discuss.

CoolGirl

Reaching out to say how terrible that is! And I hope the appointment went well? These are some excellent suggestions offered by others.

I want you to know your husband is not alone in that terrible experience with that 5FU chemo treatment. I had that same one and it put me in the hospital almost immediately back in May. I could have died. It was so terrible!!! I am really upset that they acted like nobody ever gets that sick like I did-- and told me over and over-"those aren't side effects of chemotherapy"--when they all clearly were. I didn't get to see or talk to my Oncologist-that person checked out on me in my time of greatest need.

Quality of life IS important. I went off of all of that and kept searching for alternatives however no doctors would help me. So if you get the chance for these other suggestions hopefully your husband can choose one of them.

Thinking of you and your husband and wishing for Wellness and Better Quality of Life for him too!

Ps. That's too much weight for him to lose and I suggest when he is able to eat high calorie yet nutritious foods to do so -- to help him get his strength back. It's so important. I try to focus on that and it has helped me a lot.

Miller79

https://csn.cancer.org/discussion/comment/1712221#Comment_1712221

The appointment went well. He will take a break from chemo, continue bloodwork every 4 weeks and wait to see if he has any spreadability according to the bloodwork. HE FEELS LIKE HIMSELF MORE everyday being off of chemo. He is relieved to not have all of the side effects. He hasn’t even taken a nap the last 2 days! He is able to eat and actually WANTS to…That’s progress in my opinion!!!

CoolGirl

Yes! Some really great news there. You are such a great wife and he is very blessed to have you by his side. Enjoy the Good Days as much as you can.

Trubrit

I am glad that you are both happy with taking a break,

Always remember, if you want to SEE the Oncologist, you make sure you get to see the Oncologist. You're paying enough for treatment, make sure he/she is willing to be there for you.

On my very first chemo infusion, my Oncologist peeked his head around the door to say hi, and I held out my list of questions and asked him to join me. He never peeked his head around the door at me again.

Keep us informed. We are all here to support you and your husband.

Tru

tray1961

I wondering about the side affects. I'm glad to hear you were able to space the treatment out. I'm scheduled to start on Oxaliplatin & 5FU Pump next week. Oncologist recommends six months (every two weeks)

I had my ascending colon removed along with 22 lymph nodes ( 6 were positive for cancer) . My oncologist said I'm cancer free right now , scans & bloodwork are normal.

I'm really dreading this, I think the not knowing is beginning to hit me hard!

Trubrit

https://csn.cancer.org/discussion/comment/1712251#Comment_1712251

Hello Tray1961, and welcome to the forum.

I was in your position exactly 11 years ago this month. Starting on the Ox & 5FU pump. Other than a slew of awful - truly awful, side effects, I did not have an adverse reaction to the treatment, which in and of itself, was a blessing.

The unknown is awful, and sadly that is just what it will be, until you are neck deep in it. Everybody and every body, reacts in its own way. While I had practically every side effect on in the books, there are folks who just breezed through with little changes to their normal life, and others who were all in-between.

Go into this with a healthy, positive attitude, and you will face what comes your way.

I tried to think about all of the people who had it worse, and that helped me put the awful stuff into perspective.

Don't be surprised if you hit some bumps along the way. I had treatment postponed a few times due to a drop in WBC, RBC (can't remember what that was really called) and Platelets, with a blood transfusion thrown in there for good measure.

Stick with us here, and we will stick with you.

Why not open a new thread, and tell us a bit about yourself. The home page is here https://csn.cancer.org/categories/colorectal and you can hit the New Topic over on the right.

Tru