5FU pump

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Nik Colon

5FU pump

Postby Nik Colon » Sun Sep 25, 2016 11:05 pm

I constantly read of people complaining about the noise, etc. Am I the only one who didn't have issue? I had 2 types, first the bottle shaped one, second the little ball. I preferred the ball cuz it's much smaller, only downfall is I couldn't tell how fast or slow it was going cuz no number indicator. But both were a non issue for me, even sleeping, I kept it in my fanny pack and never once did either get in the way. I don't know how many types they have, but mine were a none issue as far as noise (none), etc.

Swirdfish
Posts: 290
Joined: Sun Jun 19, 2016 3:57 am

Re: 5FU pump

Postby Swirdfish » Mon Sep 26, 2016 12:07 am

Nik,

I had the infuser bottle shaped one with the ballon inside. Very easy no noise. I actually just got around with it in my pocket and even when I went to bed it stayed in my pocket. Besides dropping it a few times they are quite durable lol I never thought of it as a major issue. A small hook under my shower head made from an old coat hanger worked wonders in the shower as you can't get it wet.

I actually found it very easy to manage. I don't think people even released i had it.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

michelle c
Posts: 1929
Joined: Wed Dec 02, 2009 3:58 am

Re: 5FU pump

Postby michelle c » Mon Sep 26, 2016 4:52 am

I had no noise issues. The best way to describe mine was that it looked like a condom in a baby's bottle. It infused for 46 hours and I could see the "condom" reducing in size so I knew it was infusing at around the correct rate. I hated it and couldn't wait to get it disconnected. I wore it in a fanny pack and also when sleeping. I would loosen the strap so it rested next to me in bed.
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: 5FU pump

Postby KElizabeth » Mon Sep 26, 2016 6:50 am

My last pump was noisy when it pumped and made my husband sleep poorly. Now I have the infusion ball and love it. It's so much easier and cost my insurance much less.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

User avatar
BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: 5FU pump

Postby BeansMama » Mon Sep 26, 2016 6:53 am

The pump my onc office uses is electronic. It is rectangular in shape and has volume and infusion rate on the display that is constantly counting down.

The pump does make noise but it's not constant. It doesn't really bother me too much.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

kandj
Posts: 314
Joined: Sun Sep 27, 2015 11:29 am

Re: 5FU pump

Postby kandj » Mon Sep 26, 2016 7:57 am

DH gets the balloon one from MSKCC. Love that one, no noise or problems with it. It is hard to tell when it is done, it always seems to run fast for DH. His local oncologist uses an electronic one in a fanny pack. That one is noisy. Makes a noise every minute or two when it disperses meds. But, it is fairly rythmic, so I can sleep with it going. It beeps when it is done, but also has a countdown timer. We have had malfuction issues with that one.
wife to DH, dx 8/15 stage IV @36, 12+ liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Liver Recurrence 7/2017-radiation
Lung met 10/18 VATS
lung/adrenal gland recurrence 11/19
Adrenal ablation 2/20 VATS 3/20
Radiation: 9/20 adrenal gland, 2/21 pancreatic node
9/2021 liver, 4/22 esophageal node
7/2023 proton therapy: liver
140+ rounds of chemo and counting
Chest nodes, lung nodules, and esophageal nodes currently.

DebZ
Posts: 83
Joined: Fri Nov 14, 2014 9:01 pm
Facebook Username: Bulc

Re: 5FU pump

Postby DebZ » Mon Sep 26, 2016 8:53 pm

Mine is like a cartridge that attaches to the pump inside the fanny pack. I never notice the noise unless I listen for it. I keep the pack loose on my waist so I can swing it easily, like when I switch sides when in bed. It's under my big duvet so never hear it!
48 @ diagnosis Sept 2014
MSS; Kras mutant G12D
Oct 2014: right hemicolectomy
Dec 2014-May 2015: Folfox
June 2015: clean scans
Sept 2015: scans reveal ovarian mass and liver met; Folfiri
Jan 2016: liver wedge resection and hysterectomy
April 2016: multiple lung mets; Folfiri+Avastin
June 2017: lung mets growing; switch to Folfox+Avastin
Jan-April 2018: dropped oxali; CEA rising
May 2018: back on Folfox+Avastin, add pulse steroid treatment to get platelet count up (continuously in 50s)

fumaros
Posts: 273
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: 5FU pump

Postby fumaros » Tue Sep 27, 2016 8:03 pm

I have a rectangular pump that makes a whiny noise every minute or so. I hate the sound it makes, and i am self concious about it so i dont really go out while i have it.
Also, i hear the whiny noise in my mind for a couple of days after it is removed, like a phantom limb.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

Re: 5FU pump

Postby Stewsbetty » Wed Sep 28, 2016 3:38 am

I have the baby bottle infusor that runs on body heat. It works with no noise. I don't mind it at all. It came with a neoprene pouch that attaches to my belt loops and just looks like a water bottle. I do have to wear a higher t shirt as the needle in my port and the tubing are noticeable otherwise.
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability
November 2018 CT shows only 1 small tumour left
September 2019 clear CT finally NED!!!

Nik Colon

Re: 5FU pump

Postby Nik Colon » Wed Sep 28, 2016 10:52 pm

Thank you all for sharing your experience

AussieAssCancer
Posts: 258
Joined: Sat May 21, 2016 10:16 am

Re: 5FU pump

Postby AussieAssCancer » Wed Sep 28, 2016 11:23 pm

I had the cassette type which resembled a portable tape/cassette player from the 80's.

It would whine every 30 seconds when the pump would do its thing. It wasn't annoying during the day because I was at work and was distracted but at night it used to drive me bonkers!
Dx Oct '15 w/ Stage 3c RC/ CEA 8
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Clear CT scans in April ‘16 (NED), Dec ‘16, Aug ‘17, Feb ‘18, March ‘19, Feb ‘20
Feb '17: Ileostomy reversed
CEA Post Surgery: ALWAYS 2

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

nomoretacos
Posts: 51
Joined: Sun Mar 27, 2016 5:57 pm

Re: 5FU pump

Postby nomoretacos » Thu Sep 29, 2016 12:51 am

I'm so glad I don't have the whiney one, I didn't even know that was a thing haha. Mine makes no noise and looks pretty much like this picture http://www.cancerresearchuk.org/prod_consump/groups/cr_common/@cah/@gen/documents/image/cr_045180.jpg

I still hate it and never leave the house when I have it
03/16 Dx Stage IIIC, sigmoid resection surgery,T3 N2b M0, 7/20 nodes, 4 tumor deposits, CEA 3.7, age 31
04-10/16 Folfox with delays and reductions
10/16 Post chemo CT scan shows two non specific spots (one liver, one lung)
11/16 Port removed
12/16 CEA 0.9
09/17 NED
03/18 NED

Nik Colon

Re: 5FU pump

Postby Nik Colon » Thu Sep 29, 2016 1:17 am

nomoretacos wrote:I'm so glad I don't have the whiney one, I didn't even know that was a thing haha. Mine makes no noise and looks pretty much like this picture http://www.cancerresearchuk.org/prod_consump/groups/cr_common/@cah/@gen/documents/image/cr_045180.jpg

I still hate it and never leave the house when I have it

I went out with mine. Just wore it in my fanny pack. Actually didn't mind people looking at me with no hair and crap. Good conversation starter and a way to educate people. I want people to know.

One time I remember most. I was at Best Buy it think. Me and hub were checking out. I noticed 2 teen boys looking at me. I went outside to wait. One came out and seen me. I said "yes, I have cancer". We talked a little b4 his friend came out. Then we all talked. They knew others with cancer too. Anyway, I felt good about it. Not the first time.

I hated not having my long curly hair (still do, will take forever to look long since it's curly, about 6 inches now). Anyway, I was put in this position and I feel I should educate and not hide from it. It can happen to anyone. Knowledge is power.

Be PROUD! You are a SURVIVOR!

AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

Re: 5FU pump

Postby AnnClare » Fri Sep 30, 2016 9:14 am

fumaros wrote:I have a rectangular pump that makes a whiny noise every minute or so. I hate the sound it makes, and i am self concious about it so i dont really go out while i have it.
Also, i hear the whiny noise in my mind for a couple of days after it is removed, like a phantom limb.


Yep, that was my experience exactly, including the auditory hallucinations the day after d/c.
Hated the whiny bastard.
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17

Dan95
Posts: 10
Joined: Mon Sep 12, 2016 12:27 pm

Re: 5FU pump

Postby Dan95 » Fri Sep 30, 2016 9:45 am

I have the rectangular model with the countdown display. About once each minute it makes a noise like the autowind on a film camera. If I stick it under my pillow at night I can only hear it if my ear is directly over it.
My only complaint is the nylon strap chafes against my skin. I solved that by slipping an old velvet Crown Royal pouch over it.
64 yo Male
Stage IV adenocarcinoma SRC
Diagnosed 08/16
CEA: 9/16- 32.6, 10/21- 23.7, 11/18- 21.8 12/16 24.4 5/17 30.0
Neoadjuvent Folfox start 09/23
CT 12/16 tumor modestly reduced, but Pulmonary Embolism discovered. Start Lovenox
3/17 Right Hemicolectomy scheduled but aborted. HIPEC scheduled. Loop ileostomy.
4/17 Right hemi, duodenum resection, numerous tumor removed from peritinium, HIPEC delayed.
6/17 Start folfiri


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