5FU Continuous Infusion

JimboC said:

I forgot to mention my most
I forgot to mention my most important help during my chemo Gerry. Prayers. Some may be offended but I had always been a God fearing person but during my cancer treatment, I really became close to my faith. I do feel that it helped me so much. It seemed that at my lowest points, God revealed Himself more to me than any other time.

JimboC said:

Hi Margarita,
Sorry it took
Hi Margarita,

Sorry it took me so long to reply. I've been out all day.

I just finished my first three rounds and, considering what I was expecting, it wasn't bad. And the best part, for me, it was VERY effective!

The Cancer Center I am treated at (and most others I expect) premedicate heavily so all in all, my effects were very manageable. I remember, I was so afraid going into my first so I urge you first of all, relax, it's going to be alright.

My side affects, like I said, were particularly mild. I was actually able to work during the first 8 weeks of my chemo. Initially, loss of appetite and nausea were big ones. The premeds take care of most of it but I also used Zofran for the first week after what I called the "Big Infusions". It kept everything manageable. I would receive my infusions on Tuesday, of every third week, take Tuesday and Wednesday off and return to work on Thursday. During that time, my eating was very light until Friday evening when I would force myself to eat a breakfast type meal when I would return home from work. Usually I would have biscuits, gravy and sausage. I called it jump starting my appetite. And, it worked. Main thing is keep on your Zofran or other nausea meds. Since you have had a gastrectomy I'm not sure how that will apply to you.

On Friday of my first infusion, a wave of misery hit me. I'm still not sure if it was mental or physical. I came home at noon that day and laid in bed the rest of the day. I've always been a fairly active person so I'm fairly sure that it was my body not knowing how to handle the loss of energy.

A week into the first round, I had some chest pains that I thought were a heart attack but they ended up just being an esophageal spasm. For the first two rounds, about a week into it, I experienced it both times. Everyone thought it was the tumor spasming due to the chemo. When it didn't happen on my third round, it worried me but it turns out the tumor was probably already on the day out.

I did experience some mouth blisters initially but got on a medicine called Mugard which seemed to help. It was fairly expensive but insurance covered it. It coats the inside of your mouth with a polimer that protects it. They say the magic mouthwash works well but I didn't like the way it made my mouth feel when it was numb.

I did experience neuropathy of the fingers and hands. It started out with tingling then a pretty significan loss of sensation. My fingertips feel almost plastic now. They are returning to normal though, slowly. You must be careful if you experience this. I wasn't paying attention and was getting some food from the stove on Easter. Since my feeling had started going away at that point, I didn't notice that my hand was being burned by some steam. I had a fairly large second degree burn before I realized what was going on. I immediately went to the doctor and he gave me some silver nitrate cream and I kept it covered until it was healed. Most people who are burned don't die from the burn, they die from infection. And where my whites were dropping, I was concerned to say the least. Everything healed nicely though and I made it.

About six weeks in, my feet start burning and drying out. This was further complicated by the fact I was still working and on my feet a good bit. I used gold bond medicated lotion on them and my hands which actually started drying out about two weeks in. When I was at my desk at work, I had to take the shoes off to let them cool down. They were literally cooking in my shoes. Since I haven't been working, and I'm almost two weeks off chemo, they are doing quite nicely.

Let me think, I've covered the appetite, hands, feet and mouth. I did experience a good bit of ringing in the ears and possibly some loss of hearing range. When someone pops a soda can now around me, it rings for a bit. They tell me that will also improve with time and it has been. I did some firing of a handgun I just bought during chemo and I was very very careful to use hearing protection. I always do but I was even more so then.

One BIG thing I should warn you about. You may not experience it but I did. Constipation. After my big infusion, I would experience extreme contstipation for the first week. One of my nurses recommended Colace but it didn't do me any good so I used Miralax twice a day to get things moving. It was so bad at first, I had to use a Fleets Enema and almost went to the hospital. I stayed on Miralax at least once a day for the first seven weeks then it seemed to clear up. I've been off of it for about a month now and doing fine. Of course, be sure to check with your doctor before you use any meds. Even over the counter meds can mess with your chemo drugs.

All in all, it wasn't too bad. I did experience some severe tiredness during it which I think brought me down a good bit since I was so active but looking back, it wasn't that bad. I do have to warn you. When you get your Epirubicin I believe, it is red going in. The first few times you urinate, it will be colored red. Don't freak out. It's normal.

As for the pump, I went in thinking I was going to have a 4 day pump infusion of the 5FU. As it turns out, I was on a continuous infusion for the entire time. You do get used to it and it wasn't too bad. It did make showering tough but Paul gave me some GREAT advice which made it much easier. Glad plastic wrap. I can't remember the name but it was super cling or something like that. Worked great.

I did experience the hair loss around week three. It started coming out in clumps so I went to the barber and had it shaved. My doctor offered to write me a script for a wig but I told him I was intending to survive, not take a good picture.

Your blood counts will suffer. Some more than others. Mine faired alright but low the whole time. It makes you more tired and suceptible to infections so watch being around crowds and sick people. Also, watch what resturants you eat from. What your normal body can tolerate will be tougher on your chemo body. I am two weeks post chemo and I still don't use resturant ice or fountain soda. I researched the health department scores on all the area restaurants and drink nozzles and ice makers were the two most common offences for critical violations. I am now very picky about where I eat and don't eat anywhere unless I see how the health department rated them.

Long winded I know and much may sound bad but in general, I tolerated it very well. My oncology nurses said that ECF was one of the toughest chemo treatments they did so I was very happy how well I handled it. My PET/CT this past week didn't show anything hypermetabolic so it looks like I may have killed out the cancer. The tumor still remans but is shrinking up. I am scheduled to have the MIE on July 1 to get rid of the thing and start back on my last three ECF rounds on July 22nd.

Best of luck and I'd be happy to talk with you over the phone if you'd like. Just private email me and I'll send you my number. This is a tough chemo but you can handle it. Best of luck!