Talk Cancer

Question:

says… – Hide quoted text — Show quoted text – I am looking for info on this ‘day long’ infusion therapy from people who have actually had it. And, if possible, from people who have also had 5FU and LV via IV push. The question – basically – is this: How do these treatments compare on ‘the receiving end’? I’ve had 5FU, LV and CPT therapy. The 5FU and LV were ‘pushed’ through my mediport and the CPT was given via gravity feed IV over about 90 minutes. I can, to some degree, mentally ’separate’ the CPT side effects from those caused by the 5FU and LV. So, how much ‘nastier’ are the 5FU side effects when it is given in this fashion? Can anyone tell me from firsthand experience what goes on in this infusion process and how it feels. One of the trials I am investigating uses this technique to administer 5FU and LV to both arms (control and experimental) of the study. I’ve had 5FU and leucovorin both by IV and continuous infusion. My CI lasted for 5 weeks, though, while I had radiation. I didn’t have many problems with side effects with either method, and in fact had no problems with nausea or diarreah while on CI. Mostly I was very tired during the CI, but I think that had more to do with the radiation than the chemo. What I liked about the CI was that I could avoid numerous needle sticks. For my other four rounds of chemo, I went to the hospital once/day for five days in a row. The repeated needle sticks the first two rounds made me irritable (I have crappy veins, the nurses tell me). With the CI, the needle was changed once per week, and there’s no digging around for a vein. I also kept my portacath in for my last two rounds of chemo, which saved me from the daily needle sticks again. Michele

Thanks for the feedback, Michele. The more I hear about IV problems from cancer patients, the more I bless my Mediport. The worst ’stick’ I’ve had in my mediport was ten times more ‘comfortable’ than the best ’stick’ I’ve ever had in my arm or hand. Based on your input and that of Steve, it looks as if CI is not any harder to take than IV chemo. That’s good news. I did okay on IV chemo, and if I am admitted to this trial, I won’t even be getting that CPT-11, or as I like to call it – CRAMP-tosar. I had more problems with this stuff than anything else…. Once again, thanks Lowkey

Response:

I received 2 doses of 5FU on a continuos basis, both were for 4 days.  The first one was in conjunction with Mytomycin.  This one was the worst as the fatigue was really bad toward the 4th day.  I then had 4 weeks of local radiation (low rectal cancer).   We then had to wait a few days for my white blood count to increase.  The second 4 days of continuous infusion followed, this time with the 5FU only.  I had a better outcome here, as the fatigue was not as bad this time. One of the hard parts was trying to sleep with the pump.  The feed was into my pic line and the pump was held in place with a Velcro belt.  I would keep rolling over and waking up or kinking the tube which would set off the alarm. Hope this helps. — Steve Gossman Survivor webmaster Colorectal Cancer Network http://www.colorectal-cancer.net

– Hide quoted text — Show quoted text – I am looking for info on this ‘day long’ infusion therapy from people who have actually had it. And, if possible, from people who have also had 5FU and LV via IV push. The question – basically – is this: How do these treatments compare on ‘the receiving end’? I’ve had 5FU, LV and CPT therapy. The 5FU and LV were ‘pushed’ through my mediport and the CPT was given via gravity feed IV over about 90 minutes. I can, to some degree, mentally ’separate’ the CPT side effects from those caused by the 5FU and LV. So, how much ‘nastier’ are the 5FU side effects when it is given in this fashion? Can anyone tell me from firsthand experience what goes on in this infusion process and how it feels. One of the trials I am investigating uses this technique to administer 5FU and LV to both arms (control and experimental) of the study. TIA for any info. Lowkey the lowly Labrat

Response:

- Hide quoted text — Show quoted text – I am looking for info on this ‘day long’ infusion therapy from people who have actually had it. And, if possible, from people who have also had 5FU and LV via IV push. The question – basically – is this: How do these treatments compare on ‘the receiving end’? I’ve had 5FU, LV and CPT therapy. The 5FU and LV were ‘pushed’ through my mediport and the CPT was given via gravity feed IV over about 90 minutes. I can, to some degree, mentally ’separate’ the CPT side effects from those caused by the 5FU and LV. So, how much ‘nastier’ are the 5FU side effects when it is given in this fashion? Can anyone tell me from firsthand experience what goes on in this infusion process and how it feels. One of the trials I am investigating uses this technique to administer 5FU and LV to both arms (control and experimental) of the study.

I’ve had 5FU and leucovorin both by IV and continuous infusion. My CI lasted for 5 weeks, though, while I had radiation. I didn’t have many problems with side effects with either method, and in fact had no problems with nausea or diarreah while on CI. Mostly I was very tired during the CI, but I think that had more to do with the radiation than the chemo. What I liked about the CI was that I could avoid numerous needle sticks. For my other four rounds of chemo, I went to the hospital once/day for five days in a row. The repeated needle sticks the first two rounds made me irritable (I have crappy veins, the nurses tell me). With the CI, the needle was changed once per week, and there’s no digging around for a vein. I also kept my portacath in for my last two rounds of chemo, which saved me from the daily needle sticks again. Michele

Response:

cancer.net says… – Hide quoted text — Show quoted text – I received 2 doses of 5FU on a continuos basis, both were for 4 days.  The first one was in conjunction with Mytomycin.  This one was the worst as the fatigue was really bad toward the 4th day.  I then had 4 weeks of local radiation (low rectal cancer).   We then had to wait a few days for my white blood count to increase.  The second 4 days of continuous infusion followed, this time with the 5FU only.  I had a better outcome here, as the fatigue was not as bad this time. One of the hard parts was trying to sleep with the pump.  The feed was into my pic line and the pump was held in place with a Velcro belt.  I would keep rolling over and waking up or kinking the tube which would set off the alarm. Hope this helps. — Steve Gossman Survivor webmaster Colorectal Cancer Network http://www.colorectal-cancer.net

Thanks for the feedback, Steve. Based on your info, and that of Michelle, it seems as if the chemo itself is not that bad. Instead of mentioning nausea, hair loss, and/or diarrhea, the main complaints you guys mention seem to be fatigue, needle sticks and general annoyance trying to deal with the bulky appartaus. BTW, I know how annoying it can be trying to sleep with ‘things’ hanging off of you. I had to deal with a 30 day heart monitor a few years ago. Same thing- I’d knock a wire off and the damned thing would chime at me. Later, when I was in the hospital recovering from my colon resection, they hooked me up to an IV system that rang an alarm every time the drip stopped. My room mate was hooked up to an identical device, and naturally, all of our medications were timed to run out between 2:00 and 4:30 in the morning. The question I had was this. Why did the alarm ring on the IV pump in the patients room? Where is the sense in that? Why didn’t the alarm ring a pager on the nurses’ belt, or an alarm at the nurses’ station? The technology was there. At that same time, I had a telemetry monitor for my heart. It rang alarms at the nurse’s station when I went into arrhythmia, or my heart rate was too slow, or when I knocked off a wire. I think it is pretty stupid to ring an alarm at a patient’s bed when that patient is absolutely unable to do anything to alter the situation. I couldn’t silence the alarm, refill the IV bag or even unkink the IV hose on my own. The only thing I could do was press the ‘nurse call’ button, and with the device could do that job all by itself with the addition of a transistor and a solid state relay. The only logic to it was that it was easier and cheaper to make a device that had a bell in it than it was to make one that electronically paged a nurse. And if this bell simply woke up the patient without any nurse anywhere hearing anything, well, that’s just tough. Lowkey

Response:

I am looking for info on this ‘day long’ infusion therapy from people who have actually had it. And, if possible, from people who have also had 5FU and LV via IV push. The question – basically – is this: How do these treatments compare on ‘the receiving end’? I’ve had 5FU, LV and CPT therapy. The 5FU and LV were ‘pushed’ through my mediport and the CPT was given via gravity feed IV over about 90 minutes. I can, to some degree, mentally ’separate’ the CPT side effects from those caused by the 5FU and LV. So, how much ‘nastier’ are the 5FU side effects when it is given in this fashion? Can anyone tell me from firsthand experience what goes on in this infusion process and how it feels. One of the trials I am investigating uses this technique to administer 5FU and LV to both arms (control and experimental) of the study. TIA for any info. Lowkey the lowly Labrat

Response: