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5FU Continuous Infusion

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

The past couple of times I have been at the Cancer Center, I performed an informal, non-scientific visual poll. I was the only one out of a packed house with the continuous infusion pump. I am on a 24x7 5FU pump. Is this rare or was I just there at an off time. I am in my third week on it and you almost get used to it but not quite. It makes showering rough. I never realized how much I took a simple thing like showering for granted. ;)

Take care everyone!

Susie_Brendon's picture
Susie_Brendon
Posts: 141
Joined: Feb 2011

Hi Jimbo!
Brendon carried his 5FU around for two seperate weeks. Each time he had the chemo for 96 hours. Are you on your 3rd consecutive week of 5FU? Don't recall, but did they give you any other chemo drugs to go with the 5FU? Brendon also had Cisplatin...

Good luck on your poll results. :-)
Susie

linda1120's picture
linda1120
Posts: 438
Joined: Oct 2010

Jim had the exact same as Brendon did. He is now cancer free!

Linda

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

I am now two days into my 3rd continuous week on the 5FU. I'm getting used to the pump now. It still feels a little like the old ball and chain from the old prison days. ;) I am also on Cisplatin and Epirubicin once every three weeks. I have my next one of those next Tuesday. That's an all day affair but they treat me good there.

Callaloo's picture
Callaloo
Posts: 147
Joined: Nov 2010

It depends on your medical fitness and the personal preference of your oncologist. Many people, like I did, get 1000mg/m2/d 5FU in a 96-hour continuous infusion along with one other drug (cisplatin or carboplatin).

If you are receiving a third drug, then the 5FU dose is reduced to lessen the side effects, which means you would take the reduced dose of 5FU over a longer infusion period, say 24/7, instead of 24/4.

I think the 2-drug combo with either 48 or 96-hours of 5FU is the most common. But treatment options and theories are changing very rapidly. Even in the year since my initial treatment, there have been changes in the treatment guidelines.

Are you receiving 3 drugs?

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

You're right, I am receiving 3 drugs. Cisplatin and Epirubicin I believe that's how they're spelled anyway. I get the two once every 3 weeks and keep the 5FU flowing continuously. I go for my second infusion of the other two on Tuesday. The doctor did say that to receive this treatment, my heart, kidney's and lungs had to be health and had to be monitored during the treatment plan since it was aggressive. So far, other than a heart scare which turned out to be nothing, I am fine. (my definition of fine has changed significantly since I started treatment) ;)

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Jimbo,
Do you mean as I understand it 3 weeks continuously on 5 FU (Love the name, so appropriate)? Wow is all I can say. I was 65 and to protect my kidneys, the drs put me in the hospital for my chemo treatments pre surgery. I would go in and get Cisplatin and then 5 FU for 96 hours while getting radiation 5 days a week for 6 weeks. This way I received a lot of IV fluids to protect my kidneys. I still got pretty sick, atrial fib then at the last cycle, I had to go back in for neutropenic fever and get transfusions etc. But my surgery was 12/09 and I am cancer free and getting back to a normal retired life. So hope, all goes very well for you. take care,
Donna70

Joel C's picture
Joel C
Posts: 173
Joined: Mar 2011

I find it interesting that most people get 5FU for EC. My Dr. at Dana-Farber in Boston insisted that a combo of Taxol and Carboplatin was best for my stage 2B EC. I had my MIE surgery four months ago and will have my first post op CT scan next week. I’ll have a better idea then if my oncologist made the right choice.
Joel

paul61's picture
paul61
Posts: 1122
Joined: Apr 2010

Jimbo,

I was on the same regimen you are on. I got Cisplatin and Epirubicin every three weeks and continuous 5 FU. I had six cycles or 18 weeks of chemo. I did take a one week break from the 5 FU twice; so effectively I had 16 weeks of 5 FU, along with the six infusions of Cisplatin and Epirubicin. After 18 weeks it took me a while to get used to not having the pump. I kept reaching for it when I got out of a chair or out of bed. I had become so used to it being there.

I did figure out how to shower with the pump. My steps involved:

1. Cover the dressing over my port with “Press and Seal” plastic wrap.
2. Place the pump outside the shower enclosure on a towel rack just outside with the hose hanging over the shower door.
3. Rinse carefully trying to keep the Press and Seal from getting too wet.
4. Soap up.
5. Rise carefully again trying to keep the Press and Seal from getting too wet.
6. Dry the area around the dressing over the port first and then dry the rest of me off.

It takes a while to shower that way, but the nice refreshing clean feeling was sometimes the high point of my day.

I got the impression from talking to my oncologist and others that this is a very aggressive chemotherapy approach that requires careful monitoring particularly for kidney and heart damage.

My biggest challenge was to remain appropriately hydrated. After the third cycle I started going back in three days after each infusion of Cisplatin and Epirubicin for IV hydration. Those made the last three cycles go a bit better.

I am happy to say I am now “in remission” according to my oncologist.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED
3/14/2011 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!

Joel C's picture
Joel C
Posts: 173
Joined: Mar 2011

Hello William,
Thank you very much for the warm welcome. I have been lurking on this site since I was diagnosed with stage 2B (T2N1M0) EC back in the first week of July 2010 (two weeks after my 49th birthday). I have to tell you and your comrades on this site have helped a great deal in getting me through the last eight months.

My diagnoses of a 3cm andenocarcinoma at the GE junction came as quite a surprise as I have never smoked had no reflux and exercise every day. The only symptom I had was some back pain when swallowing. My treatment was Taxol/Carboplatin once a week for six weeks in parallel with 28 radiation treatments. The MIE surgery was performed at Brigham & Women’s in Boston by Dr. Scott Swanson on 11/18/10. To your point the proof is in the pudding and my pre-op CT and post-op pathology on both the caner site and the involved lymph node was clean, so like you I had a complete response. I guess it’s due to the scan next week that it has me thinking about chemo choices when I read about how many patients receive 5FU.
Best regards,
Joel

Joel C's picture
Joel C
Posts: 173
Joined: Mar 2011

Hi William,
During my treatment my concerns were for the most part well addressed. Also several of my friends hooked me up with people that had gone through this scary diagnosis and treatments. Finding people that I could actually talk to that understood what I was going through was very helpful. I’m not sure why I didn’t join this site earlier, I think perhaps I felt I didn’t have much to offer in the early days and was able to search for answers to any questions I had.
Regards,
Joel

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

Thanks for the tips on showering. I have such a tough time with this thing. It feels like the old ball and chain from a prison. I hate it some times but every time I go to get refilled, I get so worried that they are going to find a reason to stop it. I'm so glad to hear that it worked for you. My oncologist said it was aggressive but that's what I wanted. I figured with this cancer you've got to fight it as tough as you can. I will end up with 6 rounds. 3 before surgery and 3 afterwards.

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

Nothing would tickle me more than to avoid the last 3 rounds. Honestly though if you asked me today, I'd be afraid not to. I've been asked many times by friends and family what I would do if me post-chemo scans came back clean. Would I still have the surgery? My answer is always my gosh yes. I know that's quite a bit different but shoot, I'm afraid of making the wrong choice. I may change as I go forward though. Heck, I even contemplated if the MIE was the way to go. I've always been a "gotta take the hard road in order to get results" guy but the I realized I was being foolish.

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Hi Jimbo, My treatment was the same as yours, except I only had four rounds. I had trouble with my counts dropping, so the pump would be removed for a few days, This happened with every treatment. I had a positive node after surgery, so the same treatment was started. Two weeks into treatment, chemo was stopped because of a blood clot in the jugular vein. My doctor did not give me radiation. I have been NED with every scan since my surgery in May 2008.

I gave up showers and only took tub baths. I know a man would find a way to take a shower. My husband would be the same way. Paul, I'm sure everyone is paying attention to how this is done.

I felt lost when I no longer had the pump. It became a part of me, like carrying a purse--It's a woman thing.

Good luck. It is an aggresive treatment, but the end results are worth it.

Sandra

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

Sandy, I can understand, it's a tough treatment. I go for my second infusion of EC on Tuesday and I dread it. It was tough during my first treatment and I was healthy so I can't imagine how this will be with me weak. Paul's suggestion is great! I've always been a bit of a germaphobe so bathing always bugged me. It's nice to have an easier way to shower again. I can't imagine life now without the pump. It's really become an extension of me so I understand what you mean. I don't necessarily like it but I am fairly used to it now.

Take care,

jc

m_rita
Posts: 3
Joined: Jun 2011

hi jimbo (and paul),

i'm about to start the same regimen in a week or two (5fu continuous for 6 months + epirubicin and cisplatin every 3weeks X 6). I know side effects are vastly different across individuals, but I still would be grateful to get a sense of your particular experience with it so far...

You said you dreaded the second infusion - what was the first one like (what did you feel/experience), and the aftermath? how long were you sick for? has it gotten worse since your last post in April? did you experience tingling or numbness of fingers, mouth sores, or diarrhea (and if so, how long post-treatment?) Also, was wondering if you lost your appetite often during treatment.

I am 3 weeks post-surgery (full gastrectomy) and am just starting to turn the corner after losing lots of weight from the surgery, so I'm concerned about how the drugs will affect my attempts to get back to normal nutrition-wise. Any insights or stories you can share would help me ease the anxiety of the unknown....i'm hoping that the pump is the worst "side effect", but somehow i doubt it! thank you for sharing and tolerating all the questions :)

-margarita

BMGky
Posts: 666
Joined: May 2010

Just click on Start a new discussion and copy your post in the comment section. Saw this is your first post and it is at the end of an older discussion and may get overlooked. There are many here who can give you information. They would like to know your EC staging, where you are being treated and other information if you feel comfortable providing as it will help those who wish to help, know what to tell you.

paul61's picture
paul61
Posts: 1122
Joined: Apr 2010

Margarita,

My primary side effects from the Cisplatin, Epirubicin, and 5 FU were some nausea, dehydration, and diarrhea. But my oncologist prescribed medications that reduced all of them.

I did have some irritation of the mucus membranes in my mouth (I did not actually get mouth sores) but the inside of my mouth was very tender. My oncologist reduced the dosage of the 5 FU a slight bit and that improved things significantly. One of the things I found that helped with the irritation in my mouth was using a product called Biotene, they make a toothpaste and a mouthwash. This product is designed specifically for people with dry mouth and is very soothing on the irritated tissues inside your mouth.

Other things I found helpful during chemo:

1. I found that I became dehydrated easily. I found that if I went into my oncologist’s office about two or three days after an infusion of Cisplatin and Epirubicin and got IV hydration the first week went much easier.

I usually had the most side effects the first week, felt gradually better the second week, felt almost normal the third week and then it was time for another infusion.

The impact of chemotherapy is cumulative, so my last three cycles were somewhat more difficult than my first three, but by that time I had learned what to expect and how to deal with it so it was not so disconcerting.

2. Eat frequent small meals during the day and follow the menu guidelines in the two documents I have included below:

http://www.upmc.com/HealthAtoZ/patienteducation/Documents/Esophagectomy.pdf

http://www.upmc.com/HealthAtoZ/patienteducation/Documents/DumpingSynDiet.pdf

They give suggestions on foods that are kind to your new digestive system and things to avoid. Avoid acidic or carbonated beverages they will irritate your already tender mouth.

4. Take your anti-nausea medications before you feel nauseous. If you stay ahead of the nausea it is far easier to control.

5. My oncologist prescribed Lomotil to control my diarrhea and it worked fairly well with no real issues. But I did learn not to venture far from home during the first week after an infusion.

As I am sure other people have told you everyone reacts to chemotherapy differently. Hopefully your side effects will be mild. If you keep an ongoing log of your side effects and how you feel generally each day and discuss it with your oncologist they can usually mitigate most of the side effects.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED
3/14/2011 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!

m_rita
Posts: 3
Joined: Jun 2011

Thank you for sharing that, Paul! I was worried about the mouth sores and tenderness, so it's good to know about the Biotene and the soft diet. It's just nice to know what to expect...you make it sound tolerable, and I'm glad that there are ways to mitigate the side effects, medical or otherwise. It's very reassuring that you tolerated the 6 sessions and are around to give newbies like me a thorough briefing :)...I hope I have a similarly tolerable experience! Will try to keep you posted.

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

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!

m_rita
Posts: 3
Joined: Jun 2011

Jimbo! Please don't be sorry. I was truly touched that you were able to share so many details. I tend to write a lot too once I get started. In this case I hope it feels good to let it out -- for me, it's a big relief to read such a thorough and personal report. You must be quite an optimist to describe your symptoms as very mild - hopefully they won't be much worse for me! And thank you for reminding me that it will be OK :)

I'll mention Zofran to my doctor. I'm worried about the loss of appetite (obviously eating is very important to me :), but it's good to know that it doesn't last the whole time. So the magic mouthwash made your mouth feel numb? I guess I'll try both Mugard and magic one and see what happens (if I need it).

Sorry about the severe constipation - that doesn't sound like fun. Neither does the neuropathy (or feet frying, or ears ringing)...so it got bad after 3 treatments? I am very averse to losing sensation (like when my leg falls asleep) - so I will just have to relax in advance and breathe if/when that happens. at least it's not acute pain, right? I know that things sound worse in the abstract but when they actually happen, you deal with them. I'll just keep telling myself that what I went through before and after the surgery was the worst of it :). And unlike you I probably will take the doc up on that wig prescription - I guess I wouldn't mind taking a pretty picture...gotta make myself feel better somehow during the process!...

I'll be starting a new teaching position and teaching a new class at Columbia in the fall, right in the middle of my treatment. It's 2 days a week for a couple of hours, and I think I should be able to coordinate the chemo/bad days around it, like you did with work. But I will have to do a lot of prep beforehand, I think. Your advice

And yes, Paul's showering strategy is ingenious!

Thanks also for the tip on checking health department ratings - seems like a smart and easy way to prevent complications. Do you know what would happen if you do eat something contaminated? I guess I have a hard time picturing what it would be like to get an infection of the type that keeps being mentioned with respect to chemo.

Thank you so much for offering to talk on the phone. I am still orienting myself to the site and figuring out how to use it (e.g. how to see email addresses), but I will probably take you up on it in a couple of weeks once I start. It will be so helpful to talk to someone who's been through it when the going gets rough.

And I'm so happy to hear that you made it through the first half and that the scans are looking good. Congrats! I hope you celebrated! Wishing you the best of luck on your upcoming surgery. Keep me posted on how you're doing and I'll be in touch...

GerryS's picture
GerryS
Posts: 240
Joined: Aug 2010

I had that cocktail! 5 FU and ciplatin. The 5fu was a pump for 4 days. hard to sleep and get around but that was 14 months ago and I am still here. Chemo, prayers, surgery, all important!
Gerry

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

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.

GerryS's picture
GerryS
Posts: 240
Joined: Aug 2010

I too believe prayers are an important part of cancer therapy. You are so right about God revealing himself, through our families, friends, caretakers, communities, nurses, doctors, I could go on and on. God Bless .............

Gerry

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