living with the chemo pump for 45 days

[BobTY2D]

Hope to learn some coping skills from the experts (you all) on how to manage life for 45 days attached to the chemo pump (via power port). Daily routine...any surprises? I've been through 4 rounds of chemo but was only hooked-up for three days at a time every other week. Even that was a pain in the a@# with keeping things dry in the shower, etc. I know I'll get through it but hearing from the community is a great confort. Any advise would be great.
Happy belated Christmas and have a great 2011!

[seva]

Sorry you have to be hooked up for so long. I had the same thing during my chemorad. I think the worst part was bathing. I was in the tub and the pump was outside the tub, rinsing hair was the biggest bother. My dose was low; main complaints were metallic taste thus no appitite. Nurses would try to get me to eat more, didn't work lost a bunch of weight.I very tired from teaching half day doing a rad treatment and having the chemopoision racing through my body. It was doable I made it work. Good luck, everyone responds differently.

[weisssoccermom]

I only lasted one full week before switching to Xeloda. Have you asked the docs about why they aren't doing the pills - as it is considered standard during chemorad?? To me, that week was a living nightmare! I had no appetite and like the previous poster, my doctor started to get concerned. Metallic taste as well, fatigued, etc. Those side effects totally disappeared once on Xeloda. I hated not being able to get what I considered a 'good' shower, hated having the pump in bed with me, hated having the pump in the car, etc. Basically, I just HATED that pump - don't know how I could have handled the whole 5-6 weeks! In addition, I had a horrible reaction to the Tegaderm patch covering my port/needle. Itched like crazy, welted up, etc. I know that others have done it - Terry for example - has done it twice now and I admire her for it. Me, no way!!

Good luck.

Jaynee

[NWgirl]

It didn't get real bad until the last week or so - and then I was just sick of the thing - mentally more than anything. But by then I was just SICK period - the pump was just one more annoyance. No great advice - just get through it.

[Brendaindy]

I wore mine for 30 days. The first round. Then 3 days every other week.

For the shower I put a nail in the wall just outside the shower and hung the bag on it. Yeah, it was a pain to have to lift it over the shower door and hang it, then remember to lift it back over before I tried to walk through the door. (that was comical sometimes)

At night I hung the bag on my bed post (if you dont have a bed post then put a nail in the wall next to the bed) There is enough line on the pump to be able to roll over. Some nights I would just wear it so I didn't have to worry about it.

The pump was really not a big deal to me. Just a neusance (sp?) You just have to adapt. Good luck to you.

[KellyBelle]

Oh geez... I hope I never have to have that. The pump was the worst part for me, mentally. I only had the 48-hour version so it wasn't a big deal, but I couldn't handle bathing or showering during that time. I simply couldn't look at myself in the mirror with that bag hanging on my naked body and the tubes coming out of my chest. But I guess you gotta do what you gotta do. I tried hanging mine on the bedpost at first, but a couple of times I got up to pee in the middle of the night and forgot about it. Ouch. I just kept it around my waist in the fanny pack and slept on my side --never had any problems sleeping.

I'm so sorry --45 days sounds like an eternity to me, but it didn't bother other people as much as it seemed to affect me, at least psychologically.

Kelly

[gracie]

I have never heard of a straight 45 days on the pump. I did 5 days on off weekends then repeated the chemo/rads for another 5 days.

How often will you have to go in for refilling the pack to keep it going for 45 days.

I question also, what about the pills? Seems that would be a better answer.

I actually did not have many problems with mine. Once in a while I would forget and a quick tug would remind me.
I don't think I had even one person ask what I was wearing.
Very good luck to you with this.
gracie

[BobTY2D]

They tell me I get refilled every week. I did ask about the pills and the Dr said no...it had to be the bottle.
It's probably the least of my problems. Can't wait for the radiation burns...I have to drive sitting on a ring?#$@%
Oh well, I'm just one of the gang so I'll get through it.

[Terry]

I just got unhooked after 30 days. This was my second time, the first time I was on it for 7 1/2 weeks (delay in get radiation). Just check it every morning because my battery went dead when I was sleeping and I didn't hear the alarm and once the batteries completely dead the alarm stops. Throughout the day check it, mine backed up and the tube and chemo bag were completely red with blood. Call your docs office if this happens. I'm an hour and a half away and a nurse so unhooked myself. It was a pump malfunction. If the alarm goes off and it says occluded, push stop and then restart it, it should be fine. Carry a spare battery with you because chances are the battery will die within that time. Just push stop (if it didn't stop on it's own) or power off, change the batter and push start again.

Mine was carried in a fanny pack. To shower I would clip it up around the shower curtain rod. My husband hooked up a handheld shower head so I could shower without getting it wet. Still didn't work real well, by the time I went in every week the tegaderm (clear dressing) was always hanging by a thread. Have some paper tape with you to tape the dressing back on if you need to. Don't try and wash your hair in the shower, no matter how hard you try the dirty soap will run down your back on over the dressing and possibly under it, wash it in the sink.

I can't think of anything else to tell you. It's really no big deal and just becomes part of the routine. I'd wake up some mornings with the thing around the back and completely on the other side of me, it's pretty tough. Oh, if you have a chewing puppy watch them. When I had the first one my chi was only a couple of months old and I caught her chewing on the tubing Luckily I caught her right away.

You'll do fine, it's kind of a pain but not the worse. Good luck and God Bless!
Terry

[Terry]

I was on the pills for a year and a half I guess, the pump is easier, you don't have to remember to take them and if it's only for a short period. I wouldn't have wanted it for a year and a half.

Buy yourself some calmoseptine for the radiation burns, it's a Godsend! You can order it online from Walgreens, at the store if you have them where you live and probably most drug stores. Your rad onc may tell you not to use anything. I asked mine and he said I could use things as long as EVERY BIT was washed off before each treatment. I found the Johnson and Johnsons 24 hr moisturizing lotion to be the most soothing for me. You can use aloe lotion but make sure it's completely alcohol free, also cocoa butter. I used the aloe and cocoa butter but like the J&J the best. I didn't discover calmoseptine until after but the worse pain is the last week or two and about two weeks after. Calmoseptine is a little harder to wash off too. I still have it in case I ever need it (fissure from radiation acts up on occasion).

Good luck and God Bless!
Terry

[stexcanuck]

I wore a belt with everything, including shorts some nights...kept me from rolling onto one side, but was better than getting up at night to pee and forgetting the darned thing. It is surprising how much forgivness there is in the bungee... err, tubing, and with the port, should you forget/drop the pump, it just gives a tug, as everything is pretty well sucured and surprisingly forgiving. Showering you need to droop the tubing over the glass, but thats not too bad. You do get tired of the leash, no doubt, but it is doable.

[Terry]

I didn't read all of the posts but just did. You might not have much for side effects. To me it was "chemo light". I was tired and once in a while I'd have mild nausea that compazine would take care of. The first time I was on it (3 yrs ago) I got bad mouth sores and the doc adjusted the dose and gave me some stuff (not miracle mouthwash, but that works too). That was about all the side effects I got. I seemed to feel more sick on the pills, plus remembering to take them was a pain and I forgot on a couple of occasions and sometimes wonder if that didn't cause the cancer to mutate, who knows. Try it, give it some time and if you completely can't stand it tell your onc. and ask to go on the pills.

If you have any other questions, feel free to pm me, after 70+ days on the thing between two times I know the thing pretty well.

[TheBurn]

Interesting that your onc wouldn't allow the pills. In the summer when we thought I was going to do neoad chemo & rad, my onc suggested them, said they have the same efficacy and usually less side effects. Problem, of course, is that they can be expensive depending on your insurance. I think the retail is $5/pill and my onc calculated $3,000/month. Even a 20% co-pay would make that $600/mo. So with Folfox, I just decided to do the pump and deal with side effects of 3 infusion days, instead of every day pills. And I just have a $30 co-pay. I also found out at my teaching session from the finance person that she would always find me money if that was the reason I was making any medical decisions. So if I do a round of chemo/rad after my Folfox as my onc is thinking, I'll have to really mull this over.

[Deb1957]

Hi Bob,

"Glad - Press & Seal" great for keeping your port dry during a shower. Put tape around the edges. Just don't tape the clear cover protecting your port.

Living with the pump for 6 weeks was ok for me. I forgot about it one time.... just became part of me for those 6 weeks. It was when I had it for the 3 days that I would forget about it all the time. (maybe chemo brain had set it by then)

Burns from radiation I used Aquaphor Ointment and oatmeal sitz baths.

Wishing you the best

Debbie

[Cj51]

For radiation, I found aloe vera gel to be good--just be SURE it's pure gel and has no alcohol in it. Weisscoccermom has a lot of good tips, if you search on her posts you should find some. Use a mild glycerine soap, again, no fragrance or alcohol. Start now, before the burning begins. It will help put it off a little, but eventually, it will hurt. When things got really bad, the last few weeks or so, I got some suppositories from my radiation oncologist. Those actually did help a LOT, but I had to ask and make it clear that the pain was really bad. Be sure that whatever you are using, to make sure that it is totally and completely washed off before your treatment--otherwise it can actually make the damage worse.

I'm also curious about why your onc wouldn't allow the pills. Is the pump 5FU? Did he give a reason? Not questioning your oncologist, just curious.

Good Luck,
Cj