pounding
Comments
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5FU Pumpstevenl said:Pump
Hi Mary,
I don't know yet, but I'll find out tomorrow. I know it won't be hard though. Piece of cake, as they say. It sounds bad I know Mary, but it is something that I may have to do, doesn't necessarily mean you will. Hang in there, you will be fine. Remember whatever happens we will beat this O.K.?
My best to ya,
Steve
Morning Steve,
During my initial nine weeks of chemo (three week cycles), I had a pump for the 5FU. I would go in on Monday of each three week cycle for the chemo (Cisplaten and Taxotere). I'd spent all day usually on those Mondays. At the end of the day they'd hook up a small pump that was in a fany pack. It hooked into the port in my chest. That would pump in the 5FU about every 30 seconds or so. Somewhere around late Thursday night it would be empty and beep. You just turn it off and clamp the tube. Friday morning I'd go in, they'd remove it and flush the port. I think they may have given me hydration fluids then also.
The following Monday (week two), I'd go in for fluids and Neulasta. A bone morrow regenerator to stimulate blood cell growth. Around Wednesday that first week it felt like I had the flu. Bones hurt and ached, but it only lasted that first time and Tylenol helped get over those few days. The reminder of that three week period was mainly recouping.
I'd lose my taste for about a week or two, then it would come back (just before the next cycle).
Around the beginning of the second cycle I started losing my hair. It didn't hurt or anything, just my scalp felt a little tingly I guess.... I wear it short and from being in the Marine Corps for several years, I just flat topped what I had and wore it pretty much like that through my treatment.
The pump is OK and you get kind of used to it. But I couldn't wait to get it off at the end of the week. It just didn't seem like I was fighting on my own when I'd hear the pump every 30 seconds or so...(not to mention having to wear the fanny pack).
Not sure of others either, but I seemed to have an odor when getting the chemo and especially the pump. It might have just been my imagination, not sure. I just think or would think that all of those chemicals were permeating from my body.
Good Luck and the pump isn't a big deal. You can wear lose clothes and you really can't see it that well.
John0 -
PumpMaryRC said:pump
What is a pump? Dont you just go to chemo... they drip it in and you go home? Do you have to pump it in at home too? Is this hard to do? Do you do it yourself? I know I am a nurse but I only do home care with children, dont know much about chemo. Sounds hard to do?
Mary
Steve and Mary,
I had a pump for chemo. I would go into the "chemo lounge", and spend hours getting hydration, anti-emetics, steroids, anti-allergy meds, cisplatin, taxotere, and more hydration. Then, the 5-fu pump got installed (hooked up to my line). The drug was in a plastic bag inside a fan ny pack that also held a battery operated pump. I could wear the fanny pack, or carry it near me (I was attached to the pack by the tubing going from the pump to my line (PICC, for me). If I held my arm at a bad angle, or kinked the tube, an alarm would go off (not often). I had the pump going 24/7 for 5 days - 5-FU ran out right at 5 days, and the pump would be removed very soon afterward (pumping stopped whether the pump was removed or not). I did nothing to the pump unit - a nurse hooked it up; a nurse unhooked it.0 -
ExactlyLandranger25 said:Pump
Hi all, sounds like what Steve is getting is pretty much what I had. The Cisplaten on Mondays in the Cancer Center is pretty much an all day thing. Couple hours of hydration, then couple of the Cisplatin and then more hydration and a drug that will make you pee like a monsoon. Just before you leave a little battery powered pump pack is attached to your port and you take it with you until Friday. (96 hours) They give you a little fanny pack to wear and run the tubing up under your shirt. This is the 5FU. The pump fires about every 25-30 seconds. Just a short humming or buzzing. I put the pump down next to my body while I slept. If you have a cat at home better not let him in the bedroom. They seem to be attracted to the thin rubber tubing that delivers the chemo. (and ipod headphone wires as well which are similar and I have bought several for my daughter because of our cats) If the chemo leaks you'll have a huge toxic mess to clean up. Not good. Pump or IV pole went with me to radiation. Just rolled it on in and up to the table and then back when done. Good luck Steve, you can do this. As said above, one day at a time. Soon the road ahead to finish will be shorter than what you have behind you and then you'll be done.
Mike
Hi Mike,
From my foggy memory, and sketchy, at best, note taking, you are spot on as to what the MO told me . My daughter had a recorder that I didn't know about and she told me this morning. Most of the other doctor visits she, or my wife, just took notes on the computer. Thanks for writing as this has taken a lot of the anxiety and edge of uncertainty off of today's upcoming events. Sounds like I will be enthralled with the seemingly exciting schedule.LOL
Thanks Mike,
Steve
Thank You too Sweet,Hondo Wait a minute, THANK YOU EVERYONE!!!!!!!!0 -
good luckstevenl said:Exactly
Hi Mike,
From my foggy memory, and sketchy, at best, note taking, you are spot on as to what the MO told me . My daughter had a recorder that I didn't know about and she told me this morning. Most of the other doctor visits she, or my wife, just took notes on the computer. Thanks for writing as this has taken a lot of the anxiety and edge of uncertainty off of today's upcoming events. Sounds like I will be enthralled with the seemingly exciting schedule.LOL
Thanks Mike,
Steve
Thank You too Sweet,Hondo Wait a minute, THANK YOU EVERYONE!!!!!!!!
Mike, sweet said it best, we are there for you in spirit and you are definitely in our thoughts and prayers. Go get'm and we will be here when you return to let us know how it went. We are also praying for your wife and daughter as this journey will also be hard on them. The most important thing to remember is to hang on to your faith and remember God will help you through this. Hang tough and go kick some butt...lol,
)
God Bless,
Debbie0 -
What they said ...stevenl said:Exactly
Hi Mike,
From my foggy memory, and sketchy, at best, note taking, you are spot on as to what the MO told me . My daughter had a recorder that I didn't know about and she told me this morning. Most of the other doctor visits she, or my wife, just took notes on the computer. Thanks for writing as this has taken a lot of the anxiety and edge of uncertainty off of today's upcoming events. Sounds like I will be enthralled with the seemingly exciting schedule.LOL
Thanks Mike,
Steve
Thank You too Sweet,Hondo Wait a minute, THANK YOU EVERYONE!!!!!!!!
Steve,
Holding you in my thoughts. Now, get out there and have one of those "finest hour" moments we were all discussing yesterday.
warmly,
Deb0 -
ShowersMaryRC said:Hang in there Steve, you can
Hang in there Steve, you can do it. I just hope I can! With all this talk of pumps and ports and tubes.... is a person allowed to take a shower? I know this is coming for me, I need to be prepared for all of it.
Mary
Mary,
Showers: Chemo Pump - yes (bag out of shower/tub); Feeding tube - yes; PORT - yes; PICC line - no (but I "sneak", and wrap my arm in press and seal kitchen wrap, then tape the ends, and shower the rest of my body, holding the PICC arm out of the water). It is awkward getting dressed with the pump for a while (PEG, too - I use an ID badge clip to clip my PEG tube to my bra to hold it in place. In the shower, I wear a long dental floss "necklace" (hah!) to "hold" my tube while I shower.
More fun to come . . .0 -
Nice level of detail there...Pam M said:Showers
Mary,
Showers: Chemo Pump - yes (bag out of shower/tub); Feeding tube - yes; PORT - yes; PICC line - no (but I "sneak", and wrap my arm in press and seal kitchen wrap, then tape the ends, and shower the rest of my body, holding the PICC arm out of the water). It is awkward getting dressed with the pump for a while (PEG, too - I use an ID badge clip to clip my PEG tube to my bra to hold it in place. In the shower, I wear a long dental floss "necklace" (hah!) to "hold" my tube while I shower.
More fun to come . . .
Pam,
Ah, the tools of our various trades... saran wrap, tape, clothes pins, badge clips, and a most innovative use of dental floss. I'm wondering if my small carabiners would be helpful to attach the various tubes and pumps. I've got a sweet little multi-pocketed photographer's vest that I haven't much used yet. Perhaps that would allow a greater level of comfort than a fanny pack.
warmly,
Deb L.
(Survivor of the infamous days 4, 5 and 6 post-tonsillectomy, now wondering when the pain will subside.)0 -
5 F-U PumpD Lewis said:Nice level of detail there...
Pam,
Ah, the tools of our various trades... saran wrap, tape, clothes pins, badge clips, and a most innovative use of dental floss. I'm wondering if my small carabiners would be helpful to attach the various tubes and pumps. I've got a sweet little multi-pocketed photographer's vest that I haven't much used yet. Perhaps that would allow a greater level of comfort than a fanny pack.
warmly,
Deb L.
(Survivor of the infamous days 4, 5 and 6 post-tonsillectomy, now wondering when the pain will subside.)
While telling me all the ins and outs of using the 5 F-U fanny pack, my oncologist tells the story of one of his patients calling in the middle of the night and saying the battery had run down. He told the patient to just "cut it off, then". The patient did as told by using scissors and "cutting it off" close to the Medi-Port.
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ToolsD Lewis said:Nice level of detail there...
Pam,
Ah, the tools of our various trades... saran wrap, tape, clothes pins, badge clips, and a most innovative use of dental floss. I'm wondering if my small carabiners would be helpful to attach the various tubes and pumps. I've got a sweet little multi-pocketed photographer's vest that I haven't much used yet. Perhaps that would allow a greater level of comfort than a fanny pack.
warmly,
Deb L.
(Survivor of the infamous days 4, 5 and 6 post-tonsillectomy, now wondering when the pain will subside.)
Hey girls,
When referring to these tools, do I need to start wearing a bra, or do I need to be a little more innovative than that???? I mean the thought of what I might have to clip the I.D. badge to. LOL
Steve0 -
My PumpPam M said:Pump
Steve and Mary,
I had a pump for chemo. I would go into the "chemo lounge", and spend hours getting hydration, anti-emetics, steroids, anti-allergy meds, cisplatin, taxotere, and more hydration. Then, the 5-fu pump got installed (hooked up to my line). The drug was in a plastic bag inside a fan ny pack that also held a battery operated pump. I could wear the fanny pack, or carry it near me (I was attached to the pack by the tubing going from the pump to my line (PICC, for me). If I held my arm at a bad angle, or kinked the tube, an alarm would go off (not often). I had the pump going 24/7 for 5 days - 5-FU ran out right at 5 days, and the pump would be removed very soon afterward (pumping stopped whether the pump was removed or not). I did nothing to the pump unit - a nurse hooked it up; a nurse unhooked it.
Well Steve, Good news and bad news....Good news is that the 5FU was not the drug that kicked my butt. Really didn't have much trouble with it at all as far as side effects. Bad news is twofold...That *&$% pump will irrate the hell out of you with it's "on the closk" PSSSST sound :>)every few minutes/seconds
And you better hope your bath tub doen't have the spigot at the end where you will have to lay when taking a bath and you have to set the pump on a stool by the tub.
Just joking, the pump is a pain but it is not a big problem. It injects doses an schedule 24X7. I had another drug, DDP, that I took every third week and it was the one I had to prepare for.
Unlike Pam, mine had the drugs inside the pump mechanicism.
I named my pump "hemmaroid"
Hang in there.0 -
My PumpPam M said:Pump
Steve and Mary,
I had a pump for chemo. I would go into the "chemo lounge", and spend hours getting hydration, anti-emetics, steroids, anti-allergy meds, cisplatin, taxotere, and more hydration. Then, the 5-fu pump got installed (hooked up to my line). The drug was in a plastic bag inside a fan ny pack that also held a battery operated pump. I could wear the fanny pack, or carry it near me (I was attached to the pack by the tubing going from the pump to my line (PICC, for me). If I held my arm at a bad angle, or kinked the tube, an alarm would go off (not often). I had the pump going 24/7 for 5 days - 5-FU ran out right at 5 days, and the pump would be removed very soon afterward (pumping stopped whether the pump was removed or not). I did nothing to the pump unit - a nurse hooked it up; a nurse unhooked it.
Well Steve, Good news and bad news....Good news is that the 5FU was not the drug that kicked my butt. Really didn't have much trouble with it at all as far as side effects. Bad news is twofold...That *&$% pump will irrate the hell out of you with it's "on the closk" PSSSST sound :>)every few minutes/seconds
And you better hope your bath tub doen't have the spigot at the end where you will have to lay when taking a bath and you have to set the pump on a stool by the tub.
Just joking, the pump is a pain but it is not a big problem. It injects doses on schedule 24X7. I had another drug, DDP, that I took every third week and it was the one I had to prepare for.
Unlike Pam, mine had the drugs inside the pump mechanicism.
I named my pump "hemmaroid"
Hang in there.0 -
You'll do great Steve
Sounds like the same regiment they started me out on, was fine the first few weeks, everyone was super at my cancer clinic, and met alot of nice people. It gets rougher, depending on your weeks there, I had 7 weeks radiation and 3 chemo, with 3 in between hrydration treaments. Suggestion, eat all you can within the first few weeks and get the added pounds on you. it looks like you have good support. Good Luck, and if theres anything you need, ask your doctors, they'll do anything they can to lessen the pain. Good Luck. Dennis0 -
Hey Dennis,dennis318 said:You'll do great Steve
Sounds like the same regiment they started me out on, was fine the first few weeks, everyone was super at my cancer clinic, and met alot of nice people. It gets rougher, depending on your weeks there, I had 7 weeks radiation and 3 chemo, with 3 in between hrydration treaments. Suggestion, eat all you can within the first few weeks and get the added pounds on you. it looks like you have good support. Good Luck, and if theres anything you need, ask your doctors, they'll do anything they can to lessen the pain. Good Luck. Dennis
Good to hear from you, and thanks for the encouragement.
Regards,
Steve0 -
The Pumpstaceya said:Keeping you in thoughts and
Keeping you in thoughts and prayers. Hope it went as well as possible.
A very good thing- all of those who've told of their pump experiences in this thread. So, Steve, your pump will be the Flourouracil.
My experience was a little different. I was not given the Cisplatin drip. I carried two pumps for the 96-hours of weeks #1 and #4, getting both the Cisplatin and FU5 together for those 96-hours. OF NOTE: FINALLY, I understand why the pouch they gave me was not big enough for the two pumps- typical is only one pump, as one of the Chemo Nurses admitted. I ended up buying a $5 school lunch pouch at Walgreen's to carry my pumps. At the time, I was rather frustrated with the pumps because of the pouch, but now I understand. Thank you.
As for the hassle, Steve: yes, the bulk of it is a nuissance, and you will take it to bed with you; however, the Port attachment held good for my two endurances, and all my anxiety about them at the start of week #1 was proven wrong. Steve, my friend, think of it as a Lifeline. Same goes for the PEG. Have you checked-into the formula thing, yet? 4.0, rather than the common 1.5, worked for me: requires less feedings/day, and is cheaper. For me, the 1.5 woulda required 7 feedings/day, and the 4.0 only required 4= a far-less hassle. And, I sometimes did a 1.5 with three 4.0s. Worst of times, three 4.0 was enough, Steve. Never lose sight of the fact that YOU MUST give your body the nutrition it needs to win this battle. ANN- IT'S YOUR JOB TO MAKE SURE HE GETS THE NEEDED NUTRITION, along with all else in this time of your's.
As Mick has noted, you will need over-the-counter for both extremes of regularity. Just the way it is. And, again- be open with your Drs. and Nurses about how things are going- you're fighting the bigC fight, and they realize the enormity of that battle. They will get you thru it. And if there are times you find their care lacking- let us know, and we will advise in the strongest of terms for you to make copies of, and present to them as evidence that they need to do more.
Steve and Ann- we are all with you, now, in the background. All you gotta do is have serious concerns, and then we step out of the shadows with our strong experience-based opinions to help you in any way we can. This is very much what we are all about, here. It is your battle, of course, but you are nowhere near being alone.
Keep us informed, and...
Believe.
kcass0
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