Getting Ready - Wondering about the pump

mykidsmommy

Hello Fellow Fighters~

Looks like I will start on chemo pretty soon - since it's been 10 years since my first chemo I am hoping for better things, but not kidding myself. Dr says I will be wearing a pump for 48 hours. Back in 2007 I was in patient for the 48 hour drip, so I am feeling better about being able to be home ,in own bed - with family and dog around. 

Would love to hear from you all who have done it - tips and tricks of the pump process. Assuming I take anti- naueasa meds  - Do you go abotu your life? Drive and stuff or you do hunker down? I know everyone is different, but trying to get some ideas from those who have done this routine.

 

 

lp1964

Dear Friend,

I did the same treatment for months through a Picc line. Are you gonna get a PICC or the port?

waering the pump for a couple days although annoying is not bad. You just have to get used to dress yourself and do other things on a "leash" lol. Prepare yourself for nausea, diarrhea or constipation and bad tast in your mouth which was the worst for me. My eyes also burnt bad so you drops.

I also did the tablet form of the same medication called Xeloda which was even more convenient. Did you look into that?

I wish you strength and endurance during your treatment.

Laz

 

Trubrit

The pump

I hated the pump when I had it for 48 hours, and then, when I was hooked up for six weeks straight, I ended up not being at all bothered by it. In fact, it seemed easier knowing that it was around for so long. 

One thing that worked for me. I had a habit of getting up and leaving the pump behind. Not a good idea. It would yank of the tubing and I was so scared I'd pull the whole thing out. I ended up using sticky tape to stick the tubing in several places, so that when I walked off without it, it would pull on the first couple of stuck parts. 

If it is battery powered, keep a spare set of batteries with you at all times. 

I had no problems taking my pump out with me. I either hung it over my shoulder, or wore it like a butt bag (fanny pack). If people wondered what it was, I was always more than happy to fill them in on it. 

I used to take baths, and just not slip undre the water. The tube was long, and hung over the side of the bath to where the bag was sitting. 

Still, Its stuck on there pretty darn good, so showering would be fine. 

Good luck as you head back into treatment. 

Sue - Trubrit

vtspa6

They told my husband he could

They told my husband he could not take a bath/shower during pump time.  The reasoning was the port could get an infection (even tho it was covered over with tape.  The nurse should give you extra batteries, Tims died several times.  He also tapes his tubing due to forgetting about the bag and walking off.  He still hates it tho, don't think he will ever like the pump.  For some reason he gets the sickest the day he gets the pump off.

NewHere

Chemo

I started chemo almost a year ago today and stayed on for 6 months.  Went to Memorial Sloan Kettering for a few hours for initial infusion, then went home with pump for close to 48 hours.  After the first two sessions, my wife disconnected me at home and we would return the bottle next visit.  

I was fortunate in that the pump I had did not need batteries, it ran off body heat.  No need to change batteries and no issue with noise that others have mentioned.

The bottle itself looks like a large tylenol capsule and I had it in a pouch on the side of my hip.  When I went out I usually wore larger shirts to cover it up, basically not noticable for the most part.  Once in awhile I would catch the tubing, but not too big a deal.  I would rest the day I got hooked up very often, just because the day was usually a bit long, but often did things such as going out that night.  During the days I was hooked up, I drove, went out, went to baseball games walking all over the ballpark.  (My blood work was always good.)  The exercise of walking helped me a lot.  Sometimes I was a little tired, but nothing a nap could not take care of.  It was more getting over a bit of inertia and start doing things.  There were a couple of times I was going to blow off the games, but figured I could go for a bit and leave if I was not up for it.  And usually getting out and about put a smile on my face and in a real good frame of mind.

I would usually get disconnected on Weds, and late Thursday or Friday is when I would "crash," which seemed to be the worst for me about halfway through the treatments.  Would sleep close to 48 hours straight a couple of times.  Was told is because the steroids in the infusion were wearing off.   

If you have the port, get the lidocaine type cream, takes the sting out of things.  Also if the flush or saline taste starts affecting you, pop a bunch of altoids. Again, about halfway through for me, the taste started becoming annoying on the flush.  Sort of sticks in my head still and I pop the Altoids when going for my flush or bloodwork or scans.

Overall I handled the chemo really well based on everything I have seen people go through.  And I wish everyone who has to go through this has it as overall easy as I did.  Not that it was a walk in the park, but a lot less than I envisioned.  I did have pretty much every side effect, but it often was only once and not too bad.  For instance, one time I did have the hiccups for a couple of days.  Then done with that.  The cold sensisitivty was one thing that was somewhat constant, but worked around it.  Had the neuorpathy in hands and feet, and I think it is starting to resolve finally.  Minor nausea, but really did not even need that many pills for that.

The first week when hooked up and disconnected was when I ate less, and just ate whatever appealed to me.  Ginger snaps was a big one.  The second week, off week, was when I had my apettite back and ate more.  I never really dropped more than 10 pounds off of where I was normally.  Again, real lucky.

One last thing off the top of my head, trying to do some normal things helped.  Even if it was just going to grab a coffee at the local diner for a bit.  And a second last thing, chilling on the couch and watching some movies on Netflix worked.  I am usually get up and go all the time.  But just relaxing and giving my mind and body a break helped.  

beaumontdave

Folfox? I wore that bulb on

Folfox? I wore that bulb on my belt with a line to my port, near my collar bone. Worked through the treatment, physical stuff, and did fine. I tired a bit quicker, felt the heat more, and probably the cold if it wasn't SoCal, cold water felt like an electric shock on my hands. I wore a tank top with a t-shirt over to protect the line, but still disconnected the line twice, which made for trips to the ER. They might add Avastin, I never had it but my wife did a didn't seem discomforted by it. Outside of having ice in my drink, I followed a normal routine, I hope the same for you...............................Dave

Trubrit

vtspa6 said:

They told my husband he could

They told my husband he could not take a bath/shower during pump time.  The reasoning was the port could get an infection (even tho it was covered over with tape.  The nurse should give you extra batteries, Tims died several times.  He also tapes his tubing due to forgetting about the bag and walking off.  He still hates it tho, don't think he will ever like the pump.  For some reason he gets the sickest the day he gets the pump off.

Nasty

They told my husband he could not take a bath/shower during pump time.

Really?!!

With all the nasty issues I had during radiation, I HAD to take a bath, sometimes several times a day. You just have to take care. 48 hours is doable, but six weeks without a bath or shower, no. 

I also felt worse the the day of disconnect after the 48 hour infusion. 

Sue - Trubrit

DaveHereInFlorida

I take the pump out of its

I take the pump out of its own bag and place it a fanny pack so i can wear it all the time.  I sleep with the fanny pack/pump on with no prob and have it fit loosely for when i turn in the night..  For showering , i take the fanny pack off and place it in a large plastic bag then roll it up with the pumps tubing extended out all the way which gives me plenty of room for showering.  I dont have sex because im a christian divorcee and refrain from sexual hedonism , so thats not an issue.  Going to the toilet is no prob as i just unlatch the fanny pack and lay it down temporarily then relatch when im done. Driving is no issue at all.  I find this setup a very minimal annoyance and something that was easy to adapt to.

lizard44

I just got unhooked

from my pump.   I wear it home after a session in the infusion chair on Wednesday and  unhook at home on Friday. The anti-nausea meds and steroid I get in the infusion room pretty much take care of any problems and I've never been nauseated, thank goodness. I  do crash from fatigue  for a few hours during the day  while wearing it and   for a few hours after it comes off,  so I sleep a lot for those 48 hours, but for the most part can pace myself and still get some things done. As Sue said, it's easy to   forget about it  and pull on the tubing, especially when you get up in the night to use the bathroom.

For  the most part I find the pump is an annoyance rather than a  big problem.   It's more comfortable  for me to wear mine as a shoulder bag, with the strap coming across my chest, and the  pump bag resting   on my hip, rather than as a fanny pack. I'm  skinny and bony and the strap rubbing against my collarbone was uncomfortable at first but my husband taped a strip of foam to the  strap and that took care of the problem. When I was  receiving chemo/radiation last year I wore the pump 24hrs a day, 5 days a week.  That was more annoying, but I did find out how to take a shower which wasn't as difficult as I'd feared, after all.

Good luck with yours.  I think you'll like it a lot better than having to stay in the hospital with a drip. Do you have a port?  As ugly as it is ,sticking out of my chest like an alien trying to escape, I am so glad I have a port.  It makes life so much easier.

Grace/lizard44

mykidsmommy

lizard44 said:

I just got unhooked

from my pump.   I wear it home after a session in the infusion chair on Wednesday and  unhook at home on Friday. The anti-nausea meds and steroid I get in the infusion room pretty much take care of any problems and I've never been nauseated, thank goodness. I  do crash from fatigue  for a few hours during the day  while wearing it and   for a few hours after it comes off,  so I sleep a lot for those 48 hours, but for the most part can pace myself and still get some things done. As Sue said, it's easy to   forget about it  and pull on the tubing, especially when you get up in the night to use the bathroom.

For  the most part I find the pump is an annoyance rather than a  big problem.   It's more comfortable  for me to wear mine as a shoulder bag, with the strap coming across my chest, and the  pump bag resting   on my hip, rather than as a fanny pack. I'm  skinny and bony and the strap rubbing against my collarbone was uncomfortable at first but my husband taped a strip of foam to the  strap and that took care of the problem. When I was  receiving chemo/radiation last year I wore the pump 24hrs a day, 5 days a week.  That was more annoying, but I did find out how to take a shower which wasn't as difficult as I'd feared, after all.

Good luck with yours.  I think you'll like it a lot better than having to stay in the hospital with a drip. Do you have a port?  As ugly as it is ,sticking out of my chest like an alien trying to escape, I am so glad I have a port.  It makes life so much easier.

Grace/lizard44

Thank you

Thank you everyone for the replies - I feel much better about it. Thank you Grace for your postive points - I am hoping I can do as well as you with the side effects. Yes I have a port - as of Monday. And you're right I will LIKE it alot better than being in the hopstital - bleck! I am shocked that you had to do a pump for 5 days - whoa! Rock start. I certianly hope your doing better this year!

Honor 

DelrioGeorge

No problems

I have my treatment every two weeks.  After my treatment I have to wear a pump for 48 hours.  I put the pump in a fanny pack and wear a large shirt over the pack.  I take a shower with it you can get the pump wet but not the fanny pack, of course.  I sleep with it, go to work, and ride my bike with no problems.

danker

pump

I had a chemo pump 24/7 for 5 weeks.  I would come in on Fridays to get it re filled.  Led a normal life those 5 weeks.

You should have no problem at all.  Good luck!!