5FU Continuous Infusion

Susie_Brendon said:

5 FU
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

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

Linda

JimboC said:

You're right, I am receiving
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)

had cisplatin and 5FU in the hospital
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

I had the same approach
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!

paul61 said:

I had the same approach
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!

Hello William,
Thank you
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

Hi Jimbo, My treatment was
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 said:

Sandy, I can understand,
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

what's it like?
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

m_rita said:

what's it like?
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

Here are my experiences with chemo
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!