5FU pump

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Joined: Tue May 29, 2018 8:31 am

5FU pump

Postby Wendyr » Tue Jun 12, 2018 4:53 am

I might have to start the 5 fu pump again this not a good experience for me last time. I would have crying breakdown could not stop. It’s hard to sleep with it at night and showers. This is just something I don’t want to do again. Any advice on how to get through it.

Posts: 61
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: 5FU pump

Postby VeggieLvr » Wed Jun 13, 2018 2:32 pm

Hi Wendy, I understand your frustration with the pump. I hate having the pump even though I know it's a necessary evil. What I do is try to sleep through it as much as I can, I take either xanax or ativan to help with that (these also help with the anxiety I feel while the pump is connected). Ativan also helps me with nausea. Have you been prescribed anything to help you sleep and lessen the anxiety? If not I definitely recommend it, it really does help.

I don't bother to shower with the pump at all, in fact I don't shower until the day after it's disconnected or even the day after that, depending on how I'm feeling. I'm sometimes too weak to manage it until the 2nd day after disconnect. While the pump is connected, I just stay in bed for the whole time. I try to distract myself with TV but I often find it hard to focus, so I do my best to just sleep as much as I can to make the time go by. On disconnect day, I also have them give me fluids, which has helped me to recover faster (I have a hard time drinking anything during infusion week due to the oxi).

Hang in there, I know it's hard and we shouldn't have to go through this. But you can do it and I'll be doing it right along with you!
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)
12/5/18 - Erbitux added
5/28/19 - 2nd liver resection/ablation

Posts: 108
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: 5FU pump

Postby crikklekay » Wed Jun 13, 2018 3:58 pm

I'm a caregiver so I don't have any first-hand experience to help, but here is what my husband does:

-I know it seems silly, but I made him a custom bag to hold his pump. It looks like an angry squid and it helps him "own" it in a sense instead of some plain black medical bag. I also made it with fleece so it's more comfortable for him to sleep with. I know not a lot of people sew, but maybe you can find a fanny pack or bag that resonates with you and makes the pump seem a little less foreign?

-Like VeggieLvr John also does not shower when the pump is attached. It's too much hassle so he just doesn't bother. He has a PICC line so showering is already a hassle, but the pump just makes it nearly impossible.

-He runs the lines under his shirt and uses medical tape to help them stay. Honestly, once he tucks and tapes the lines down under his shirt he looks perfectly normal. That way they don't get in his way at work either, which helps.
Caring for DH John
Colon Cancer, Sigmoid colon
G2, Moderately differentiated w/invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/ CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD
06/19 Colonoscopy Clear
08/19 CT Scan Clear
08/20 CT Scan Clear

Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: 5FU pump

Postby peanut_8 » Wed Jun 13, 2018 6:33 pm

Hi Wendy,

Do you know if taking Xeloda (a pill) is an option instead of 5-FU (infusion via pump)? They essentially do the same thing in the body, just administered differently.

Best Wishes
female, diagnosed Jan 14, RC stage 2a, age 56
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: 5FU pump

Postby mhf1986 » Wed Jun 13, 2018 6:43 pm

DH often took his pump out of the bag and tucked it in his pants pocket during the day. And at night, he simply tucked it in bed with us. Was a lot easier to manage than managing the bag it came in.

Agreeing with running it under the shirt, do that and it's easier to change clothes.

Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

Posts: 152
Joined: Sun May 07, 2017 11:01 am

Re: 5FU pump

Postby Tdubz » Wed Jun 13, 2018 8:01 pm

I slept on my back when I had the pump. I’d wear it like a satchel and while laying on my back, it would just lay right next to me on the bed. If for some reason I moved around while I was sleeping, it was still strapped to me so it wouldn’t fall off the bed. As for showers, I just skipped them too.

michelle c
Posts: 1914
Joined: Wed Dec 02, 2009 3:58 am

Re: 5FU pump

Postby michelle c » Thu Jun 14, 2018 2:27 am

Mine wasn't a pump as such. It looked like a baby's bottle with a condom inside :) It made no noise. At night I wore it in a fanny pack around my hips quite loosely. I could still sleep on my side if I wanted too. I was given a steroid just prior to my chemo treatments and this is what would keep me awake. I found that 1mg lorazepam at night helped to combat this. With regards to showers I would have a large piece of clear plastic that was sticky on the edges to put over my port area and tubes. It did help a bit but I was always conscious not to soak the area and was still careful not to get it wet. I usually had a quick shower with my 'pump' and enjoyed a longer one after it was removed. It's never a fun time during chemo but we just have to find the best way to manage it. Best wishes to you.
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

Posts: 13
Joined: Mon May 29, 2017 11:27 am

Re: 5FU pump

Postby RichieTheK » Thu Jun 14, 2018 3:52 am

I had the pump every two weeks for 23 months. When sleeping, I put in on the floor next to the bed and put a pillow over it. I always allow enough feed line so that I can do this. In fact I allow enough feed line so that I can put it on the floor and stand up.

I didn't shower on pump days. If I needed to get clean, I would take a sponge bath, with the pump on the floor next to the tub under a towel.

I think that the key to living with the pump is to have a lot of feed line. I use medical tape to tape down the line near my port so that the line won't pull on the port if I should snag it on something.
DX 5/13/2016 (Friday the 13th) mRCa Stage 4b
Met Liver, Lungs, Spine
mut KRAS G12V
mut PIK3CA
5/15/2016 Tumor partially obstructive; colostomy performed
5/2016 FOLFIRI with higher dose of Irinotecan
8/2017 Signs of tumor growth, added Avastin to FOLFIRI
4/16/2018 Primary tumor invading surrounding tissue. Chemo stopped
5/2018 Started radiation.
6/2018 Radiation finished
7/2018 Start FOLFOX
1/2019 FOLFOX canceled due to neuropathy after 14 cycles.
Maintenance, 5FU and Avastin
6/2019 FOLFIRI

Posts: 692
Joined: Fri Apr 06, 2018 11:40 am

Re: 5FU pump

Postby boxhill » Thu Jun 14, 2018 6:04 am

Being on the pump for 46 hours is a bit of a PITA to me, but not a huge deal. I shower and wash my hair, etc in the morning before infusion, and just wait until it is off to shower again. The first night I slept with it I put it on the table next to the bed and was uneasy. I was afraid I would do something to kink the hose, it would fall on the floor, etc etc. I kept checking it all the time during the day. The next two cycles I've pretty much ignored it. I put it on the bed--in the middle, so I don't have to worry about it falling off--and forget about it until morning. I do, as they suggest, take an Ativan the night of infusion to counteract the steroid in the infusion and help me sleep.

It sounds to me as if you should use Ativan, if they've given you a prescription, and talk to them about your reaction to the pump. Can you talk to a counselor?

From what I've been reading here, people seem to suffer much worse side effects with Xeloda.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

Posts: 71
Joined: Sun Mar 05, 2017 5:30 am

Re: 5FU pump

Postby JudiB » Thu Jun 14, 2018 7:36 am

I used to unwind most of the tubing attached to the pump and hang it, in the carry bag, on the bedpost! Once I started doing this, I did manage to sleep. I used to wash my hair over the bath and just have a good wash down on days I had the pump. Like you, I found working with it in the shower was too complicated....and when you're coping with all that you are, I found keeping things simple helped!
You can do it although there were times when I really thought that I couldn't deal with everything
But...10 months since I said my final (I hope!)"Goodbye pump" and it all feels a long time ago! Xxxxx
Love and hugs...one day at a time
May 2004 Breast cancer lumpectomy followed by radiotherapy, Tamoxifen 5 years, then Femara 2 years.

Jan 2017 resection around colo-rectal junction
T2bN1 M0
March 2017 Chemo Folfox started. Oxaliplatin for 4 treatments, then just 5 FU and Leucovorin for remaining 8 treatments.
June 2017 clear scan
Last chemo August 2017
August 2017 clear scan
February 2018 clear scan

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