5-fu pump disconnect question

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pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

5-fu pump disconnect question

Postby pdp497 » Sat Aug 19, 2017 9:28 am

Anyone out there on the 46 hr 5-fu pump whose doc will let them disconnect at home? I currently live in Austin but am receiving treatment at MD Anderson but it seems ridiculous to make that drive twice in one week, but I am unsure if they will giver permission to unhook the pump on my own. Anyone have any advice?
Dx 7/17 stage 4 inoperable colon cancer with "numerous" mets to the liver (one large 2.6cm x 2.3 the rest 1 to 1.5 cm)
MSS
KRAS
8/4 CEA 240

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

Re: 5-fu pump disconnect question

Postby Basil » Sat Aug 19, 2017 9:56 am

I was on the pump at MDAnderson this year and they will absolutely let you disconnect at home (and just bring your pump back when you show up for the next round). However, I will warn you that I got about five different stories before getting the right instructions. Which was frustrating because disconnect from a power port turned out to be relatively easy.

Message your onc through the app and make the request, as you have to have orders from a doc to get the training. Then get an appointment with Infusion Therapy on the 8th floor (you will probably want to get your appointment first thing in the morning, as wait times often run 2-3 hours at Infusion Therapy). Then it's ten minutes of training and you've saved yourself a five hour round trip from Austin.
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)

pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

Re: 5-fu pump disconnect question

Postby pdp497 » Sat Aug 19, 2017 10:26 am

Thanks for the information I have also been told several different things and it has been difficult to get a straight answer.
Dx 7/17 stage 4 inoperable colon cancer with "numerous" mets to the liver (one large 2.6cm x 2.3 the rest 1 to 1.5 cm)
MSS
KRAS
8/4 CEA 240

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

Re: 5-fu pump disconnect question

Postby Tdubz » Sat Aug 19, 2017 10:40 am

Hey pdp, are you in a trial or receiving special treatment related to chemo at mda? If not and you are just getting plain ol folfox, you might try looking into getting your chemo in Austin and then just going down to mda for visits with the onc. I know a few people who do that and it works out for them. Plus there are lots of onc offices in the Austin area so one should be close to you.

Kobe
Posts: 27
Joined: Wed Mar 01, 2017 10:29 am

Re: 5-fu pump disconnect question

Postby Kobe » Sat Aug 19, 2017 1:23 pm

Hi,

I'm being treated at University of Connecticut and I disconnect the 5-FU pump at home after every treatment. At first they told me no one has done it but then they agreed to let me. Helping our daughter I already knew how to do it and there was no way I was driving back just to have them take the needle out. I had to do a little training session to prove I could do it. The hardest part was getting heparin - not all pharmacies carry it. Once that was set I was on my own. They give me a sharps container and I put the chemo cartridge in it with the needle and return it when I go for treatment. It's not hard at all - a little tricky because of the location of the port but definitely doable. To me it felt like I just had to show confidence and prove I could do the flushes and they were good with it.

Good luck - you'll be so glad to be doing the disconnect on your own.

pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

Re: 5-fu pump disconnect question

Postby pdp497 » Sat Aug 19, 2017 2:05 pm

Tdubz wrote:Hey pdp, are you in a trial or receiving special treatment related to chemo at mda? If not and you are just getting plain ol folfox, you might try looking into getting your chemo in Austin and then just going down to mda for visits with the onc. I know a few people who do that and it works out for them. Plus there are lots of onc offices in the Austin area so one should be close to you.

No I am not in a trial currently trying to decide whether getting treatment locally is the right move. My only fear is that the MDA onc may not be as in top of the case if I am not seeing her as often.
Dx 7/17 stage 4 inoperable colon cancer with "numerous" mets to the liver (one large 2.6cm x 2.3 the rest 1 to 1.5 cm)
MSS
KRAS
8/4 CEA 240

Kobe
Posts: 27
Joined: Wed Mar 01, 2017 10:29 am

Re: 5-fu pump disconnect question

Postby Kobe » Sat Aug 19, 2017 2:41 pm

pdp497 - I think that's a valid concern. I did 4 consults before choosing where to go with treatment. I really liked Dana Farber but the drive was a lot and the treatment protocol was the same so I opted for the closer option. I do contact Dana Farber if I have questions and they'll help but they don't directly weigh in on day to day issues/questions since they aren't seeing me. They will talk to my local oncologist. Overall I think I made a good choice but if distance were no issue I probably would have gone to Dana Farber. I've been to MDA and they are awesome. For a different type of cancer we traveled from Maryland to Texas for proton radiation and chemo at MDA. That was definitely a good choice at the time.

mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: 5-fu pump disconnect question

Postby mhf1986 » Sat Aug 19, 2017 6:38 pm

We had a home health care nurse come in the first 3 times to disconnect DH to avoid the 75 minute drive each way to the hospital. She taught me how and came once more to watch. So far so good. The hospital sends us home with a heparin and a saline syringe. We have a large container for the leftover bottles and needles; we trade it in when it's mostly full.

The worst part is getting the bandage off his hairy chest! :roll:

M
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

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

Re: 5-fu pump disconnect question

Postby Basil » Sat Aug 19, 2017 7:00 pm

I was in a trial at MDA so I had to see my onc every two weeks. It was part of the trial protocol but mostly a waste of time. He told me he didn't need to see me that often. We would spend a few minutes chatting, mostly about non-cancer stuff. I had two infusions at the Katy satellite office, which is a bit closer to my house. I wouldn't be concerned about your doc not being "on top of things" if you don't see him in person. He still has to review your blood work and put in orders for each chemo treatment. I'd chat with his office via MDA messenger about any issues - low platelets were my issue.
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)

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

Re: 5-fu pump disconnect question

Postby DebZ » Sat Aug 19, 2017 8:55 pm

I have a visiting nurse service that disconnects me at home. Seems like standard protocol at my cancer center. Is that an option for you?
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)

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: 5-fu pump disconnect question

Postby veckon » Sun Aug 20, 2017 3:30 am

My wife always disconnected me at home. At the first chemo infusion I got last December a nurse gave her a tutorial about how to flush the lines and disconnect, and also a “disconnect kit” with everything you need. No need to come in and zero pressure from doctor to do so.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: 5-fu pump disconnect question

Postby veckon » Sun Aug 20, 2017 3:34 am

Basil wrote:I was in a trial at MDA so I had to see my onc every two weeks. It was part of the trial protocol but mostly a waste of time. He told me he didn't need to see me that often. We would spend a few minutes chatting, mostly about non-cancer stuff. I had two infusions at the Katy satellite office, which is a bit closer to my house. I wouldn't be concerned about your doc not being "on top of things" if you don't see him in person. He still has to review your blood work and put in orders for each chemo treatment. I'd chat with his office via MDA messenger about any issues - low platelets were my issue.


This is interesting to learn. At Sloan Kettering, there doesn’t seem to be a question about seeing your oncologist before treatment. You always see them before treatment for a full evaluation. So on chemotherapy I saw him every two weeks, and now with Keytruda, it is every three weeks. He seems happy to see me every time. Hope it’s not annoying him.

Edit: could this be a function of tumor staging? Since I am stage iv, you need more constant vigilance?
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Re: 5-fu pump disconnect question

Postby Volfan » Sun Aug 20, 2017 7:18 am

veckon wrote:
Basil wrote:I was in a trial at MDA so I had to see my onc every two weeks. It was part of the trial protocol but mostly a waste of time. He told me he didn't need to see me that often. We would spend a few minutes chatting, mostly about non-cancer stuff. I had two infusions at the Katy satellite office, which is a bit closer to my house. I wouldn't be concerned about your doc not being "on top of things" if you don't see him in person. He still has to review your blood work and put in orders for each chemo treatment. I'd chat with his office via MDA messenger about any issues - low platelets were my issue.


This is interesting to learn. At Sloan Kettering, there doesn’t seem to be a question about seeing your oncologist before treatment. You always see them before treatment for a full evaluation. So on chemotherapy I saw him every two weeks, and now with Keytruda, it is every three weeks. He seems happy to see me every time. Hope it’s not annoying him.

Edit: could this be a function of tumor staging? Since I am stage iv, you need more constant vigilance?


On the topic of seeing the doctor im guessing it is probably a combination of doctor preference and how you are doing with treatment. When I first started treatment I was seeing the doctor every week including off week. He wanted to make sure I wasn't having any bad effects from chemo. Then it moved to just seeing him on treatment days. Now im at every other treatment. I'm thinking of asking if we can go to every third treatment before coming in. In between scans and tests we don't have a lot to discuss. Doc and I spend more time picking at each other between android and iPhone.
I like when I don't have to see Doc on treatment days. Tomorrow I go in for treatment and will get there at 7:30 and will be on my way home no later than 1 plus I get the pick of the chair. Days I see Doc I get there at 8:30 and don't usually leave until 3:30.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

Re: 5-fu pump disconnect question

Postby Basil » Sun Aug 20, 2017 8:14 pm

veckon wrote:
Basil wrote:I was in a trial at MDA so I had to see my onc every two weeks. It was part of the trial protocol but mostly a waste of time. He told me he didn't need to see me that often. We would spend a few minutes chatting, mostly about non-cancer stuff. I had two infusions at the Katy satellite office, which is a bit closer to my house. I wouldn't be concerned about your doc not being "on top of things" if you don't see him in person. He still has to review your blood work and put in orders for each chemo treatment. I'd chat with his office via MDA messenger about any issues - low platelets were my issue.


This is interesting to learn. At Sloan Kettering, there doesn’t seem to be a question about seeing your oncologist before treatment. You always see them before treatment for a full evaluation. So on chemotherapy I saw him every two weeks, and now with Keytruda, it is every three weeks. He seems happy to see me every time. Hope it’s not annoying him.

Edit: could this be a function of tumor staging? Since I am stage iv, you need more constant vigilance?


I suspect it was the stage of treatment. I was diagnosed and had a ct and MRI and then my chemo was preadjuvant for three months. They weren't going to do another scan or otherwise evaluate to effectiveness of chemo until I completed the first three months, so all I needed was the all-clear for the next round. Obviously, had I had any acute symptoms, I would have let him know and sought his advice. But I didn't have any so all I needed was clean blood work to graduate to the next round.
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)


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