Disconnect

Please feel free to read, share your thoughts, your stories and connect with others!
Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Disconnect

Postby Trying » Wed Aug 29, 2018 10:04 pm

Does anyone here disconnect themselves after chemo? The hospital is a good distance and they are willing to train me to disconnect. Is is fairly easy or not recommended?
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Disconnect

Postby Lee » Wed Aug 29, 2018 10:42 pm

I disconnected myself once on Turkey Day. I did not want to delay treatment due to the holiday season. My chemo nurse spent a few weeks with me teaching me, then I had to do it pulling needle out myself, while chemo nurse watched. The next time, I did it solo. No problems. I could do it again, if I needed to.

My DH wanted me near him for few hours following that, "just in case a ER visit was necessary". No problems.

Personally I think you can do with with a few times of one on one training.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

J-man
Posts: 35
Joined: Tue Jan 29, 2013 4:14 am

Re: Disconnect

Postby J-man » Thu Aug 30, 2018 12:48 am

Absolutely get the proper training and a list of numbers to call for support if you need help.

Can you do it ? Up to you
Should you do it ? Up to you

Will you do it ? let us know !

thumb up and sending best wishes

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

Re: Disconnect

Postby Stewsbetty » Thu Aug 30, 2018 6:10 am

My mom (and I) were trained in the disconnect. I never actually did it all myself but walked my mom through the steps. I was concerned about not seeing the port area well and looking in a mirror and doing things is more challenging for me. However, I wish I had taken responsibility for it because it caused my mom great anxiety. She was very worried about doing anything improperly and hurting me. Dealing with her anxiety was properly harder than learning to do it in the mirror. :D doing the disconnect at home was so much more convenient than another trip to the hospital.

Beth
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!!!

hiker
Posts: 139
Joined: Thu Aug 09, 2018 10:15 am

Re: Disconnect

Postby hiker » Thu Aug 30, 2018 7:21 am

I disconnected myself after 11 of my 14 infusions. Plus, gave myself a Neulasta shot, after each one. It's no big deal. If I can do it, anyone can. I would put the 5FU bottle, the needle and the lines in a ziploc bag and take it all back to the oncologist at my next appointment to dispose of it in their biohazard containers (don't worry, you can't get poked by the needle once you remove it since there is a cover that automatically goes over the point as soon as you pull it from the port).

Your oncologist should provide all the supplies you will need to disconnect like alcohol wipes, gloves (which I never used), saline and heparin.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: Disconnect

Postby Trying » Thu Aug 30, 2018 10:04 am

Thank you all for responding
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

erins
Posts: 44
Joined: Sun May 27, 2018 12:41 pm

Re: Disconnect

Postby erins » Thu Aug 30, 2018 10:16 am

A tip from a friend was to ask permission to record the process on your phone—that way you can have a reference on hand.
38 yr old female
Rectal bleeding for 1 month—>
5/4/18 colonoscopy found mass in sigmoid colon
5/21/18 LAR
stage 2a, 0/17 lymph, clean margins
T3N0M0 G1
LVI neg, PNI neg, MSS
9/21/18 CEA 0.8
11/16/18 CEA 0.8 & CT clear
12/7/18 iron infusion
2/1/18 iron improved, CEA stable.

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Disconnect

Postby O Stoma Mia » Thu Aug 30, 2018 7:18 pm

I have never been on FOLFOX and I have never had a pump, but I would think that if your hospital allowed pump-disconnect at home then they would have a set of written instructions for you that pertained to your particular model of pump and your particular kind of port, and they would have some kind of take-home kit of supplies that you could get from the pharmacy by prescription,etc.

So, I would first check with your infusion center to see what their policy is. They might have a very strict set of guidelines because of legal considerations.

In my area, things like this can be done at home, but only by a home-visit Registered Nurse who is acting on a specific written set of instructions prescribed by the doctor.

Here are a couple of documents that show how easy or how complicated such a procedure could be:

Instructions to disconnect CADD pump and flush port-a-cath
https://www.dana-farber.org/health-library/articles/instructions-to-disconnect-cadd-pump-and-flush-port-a-cath/

Chemotherapy Disconnection
https://homecare.med.umich.edu/Content/Documents/HomeMed/Chemotherapy_Disconnection.pdf

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Disconnect

Postby juliej » Thu Aug 30, 2018 7:52 pm

And a video from Johns Hopkins that shows you how to do it.

https://www.youtube.com/watch?v=eFEnfSx6vKw
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

Cmac1275
Posts: 55
Joined: Mon Aug 06, 2018 4:21 pm

Re: Disconnect

Postby Cmac1275 » Sat Sep 15, 2018 6:15 pm

Late to the party, but I started disconnecting myself after my fourth infusion. I really don’t like that pump. My nurse came twice to show my wife how to do it. She did it the third time under nurse supervision. By then, I figured this was easy enough. Plus, as soon as that beep goes off telling me the infusion is complete, I don’t have to wait for n-o-b-o-d-y :D
42 yr, male, husband and father of 3
DX Stage IV Colon Cancer Jan 2018
Multiple liver mets
KRAS G13D / MSS

Jan 2018 Partial colon resection
Mar 2018 FOLFOX + Avastin | CEA 60.1
July 2018 Partial liver resection | CEA 4.7
Sep 2018 Recurrence in liver | CEA 2.9
Oct 2018 FOLFOX + Avastin
Nov 2018 Stopping FOLFOX. New mets | CEA 4.3
Dec 2018 Beginning AbbVie ABT-165 Trial

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: Disconnect

Postby Trying » Sat Sep 15, 2018 10:28 pm

The nurse gave me a teaching session. Next week i will disconnect myself.
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: Disconnect

Postby AppleTree » Sun Sep 16, 2018 12:13 am

Good luck with it! I live very close to the hospital, but if I lived a long ways, I think I would want to learn to disconnect myself too!
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 114 guests