5FU infusions

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mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

5FU infusions

Postby mpbser » Wed Jan 30, 2019 7:49 am

My husband finally has a surgery and pump placement scheduled for March 7th. He will most likely participate in a trial that includes " 5FU (1000 mg/m2/day continuous infusion over two days)" as part of the systemic chemo. He has only done XELOX in the past with oral xeloda/capecitabine previously for his 5FU and we don't know anything about "continuous" infusion. He has a port which he used for the Ox infusions which would take him about a half a day at our local cancer center; so, he isn't completely unfamiliar with port infusions. Now we are at MSK, which is a haul, and I am trying to plan ahead for this "two day" thing. What is it? How does the process work from start to finish? Would greatly appreciate details! Thanks!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

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ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: 5FU infusions

Postby ginabeewell » Wed Jan 30, 2019 8:04 am

They'll likely give him a pump to deliver the infusions over the two days. He will get hooked up and be able to leave with it. I have a band that keeps it wrapped up against my body for those two days, and they taught us how to disconnect at home so we don't have to go back in or have a nurse do it. Pretty simple and no reason for him to stay two days in NY to accommodate.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: 5FU infusions

Postby mpbser » Wed Jan 30, 2019 8:27 am

Thanks, gina. That's awesome to know. When is your surgery? Are you doing everything at NW or will you go to MSK for surgery? I was following your story up until a few weeks ago but then I got distracted with our visit to see Dr. D'Angelica.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: 5FU infusions

Postby LPL » Wed Jan 30, 2019 9:59 am

mpbser,
Hopefully your husband will get a ’silent’ pump. That is what my husband had. I have saved a CRguy post where he talkes about these being temperature sensitive..
viewtopic.php?f=1&t=60530&start=15#p479662
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

Nohogirl
Posts: 116
Joined: Sun Oct 14, 2018 12:15 am

Re: 5FU infusions

Postby Nohogirl » Wed Jan 30, 2019 3:54 pm

My husband gets a pump too. His is on FOLFOX regimen
Every two weeks. He gets his chemo (Leucovorin and 5FU infusion on Monday at the oncolosgist's office for about 4 hours. Then they connect him to the pump to bring home through which he receives his Oxaliplatin infusion directly into his port. The pump is programmed so it knows to pump the drug every few minutes or so. It has an over the shoulder strap so your husband can walk around with it with no hassle. We go back two days later (on Wednesday) for disconnect. After they remove the pump, my husband gets his hidriation through his port again at the doctors office which takes another 2-3 hours. This is the day when his side effects normally kick in and they last for about 3-4 days. The following week e is back to his normal self. So we and our families plan all our family things on his no chemo week. Overall it wasn't as bad and scary as we thought it would be. My husband is almost done and and thankfully his went without any delays, major issues or problems except the normal side effects (nausea, fatigue, headaches, loss of appetite). Cannabis oil helped him a lot on his "bad" days. Everyone is different and have different level of tolerance and may have different side effects or even none. Hopefully it will be a smooth one for your hubby.
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Pet Scan. NED
08/19 Pet Scan NED
08/19 Colonoscopy Clear

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

Re: 5FU infusions

Postby RichieTheK » Wed Jan 30, 2019 4:02 pm

They will definitely use his port to attach the pump. It will be a bit of an inconvenience while he is wearing it. He will need to be careful to not snag the feed line as this will tug hard on the port connection.

As I'm typing this, I have a pump attached that was installed this morning (I call it "The Albatross"). I found that if I use medical tape to tape the feed to my side just below my port, leaving some slack between the taping point and the port, life is more pleasant. I don't get the constant slight tugging, which is annoying, and if I should snag the feed on something, it won't jerk on the connection to the port, just the taped area.

Taking down the connection after 46 hours isn't hard. My medical facility will not teach the pump-bearer to do this. Usually, a Home Healthcare nurse comes in to take it down, but there were some occasions when they couldn't come, so I did it myself.

All-in-all, it will be a nuisance, but it's tolerable. Good luck to both of you.

Rich
DX 5/13/2016 (Friday the 13th) mRCa Stage 4b
Met Liver, Lungs, Spine
mut KRAS G12V
mut PIK3CA
MSS
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

gobsmacked
Posts: 4
Joined: Fri Oct 05, 2018 11:08 am

Re: 5FU infusions

Postby gobsmacked » Wed Jan 30, 2019 4:57 pm

I've had both the mechanical digital pump and the non-mechanical "ball" pump. I personally prefer the ball pump because the other pump was heavier, bulkier and made a slight noise when releasing chemo which got on my nerves after awhile because i started listening for it. The ball pump makes no noise but i do detect a rubber smell which is a little off putting to me but still a better option overall IMO.

I go in on Wednesday and get anti-nausea meds and Vectibix infused through my port. Once those are done they attach the 5FU pump and tell me to return in 46 hours. When I return they disconnect the pump and run saline and Heparin (anticoagulant) through the line before pulling the needle out. They won't let patients disconnect themselves because of potential chemo leaks / proper disposal and the need to run saline and Heparin through first.

I can say I've gotten more used to the pump and don't notice it as much these days. I just stick it in my pocket and go about my day (although I do work from home when pump is attached). I can sleep on the side my port is on even with the pump attached (it was too sore at first to do that) but do have to be mindful of the line when turning over or getting out of bed. I have showered with the pump attached a few times but have found it near impossible to keep the bandage dry so I usually ask if they have an extra one i can take home in case i need to change it.

My experience has been that I'm pretty energetic (relatively speaking) on Wednesday and Thursday when pump is attached but once it's removed on Friday I am sooo ready for a shower and lots of sleep. I think its because one of the pre-meds is a steroid that wears off by Friday. No matter what though, it's always a relief when the pump is off and I'm free for another week and a half.
4/18 - Dx stage IV liver cancer
5/18 - 7/18 Cisplatin + Gemzar (3 cycles)
7/18 - PET scan - chemo not working & spot in colon
7/18 - Start FOLFOX + Erbitux
7/18 - Chged Dr - start FOLFOX +Vectibix - CEA 2216
8/18 - Colonoscopy verified tumor - Dx chged to CRC w/ mets to liver (multiple & large in all lobes)
8/18 - CEA 576 (8/15) 282 (8/28) - Liver functions back within normal range
9/18 - CT Scan shows "significant" decrease in multiple liver masses (largest shrunken by 50%) - CEA 84

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: 5FU infusions

Postby LPL » Wed Jan 30, 2019 4:59 pm

Nohogirl wrote:My husband gets a pump too. His is on FOLFOX regimen
Every two weeks. He gets his chemo (Leucovorin and 5FU infusion on Monday at the oncolosgist's office for about 4 hours. Then they connect him to the pump to bring home through which he receives his Oxaliplatin infusion directly into his port. The pump is programmed so it knows to pump the drug every few minutes or so. It has an over the shoulder strap so your husband can walk around with it with no hassle. We go back two days later (on Wednesday) for disconnect. After they remove the pump, my husband gets his hidriation through his port again at the doctors office which takes another 2-3 hours. This is the day when his side effects normally kick in and they last for about 3-4 days. The following week e is back to his normal self. So we and our families plan all our family things on his no chemo week. Overall it wasn't as bad and scary as we thought it would be. My husband is almost done and and thankfully his went without any delays, major issues or problems except the normal side effects (nausea, fatigue, headaches, loss of appetite). Cannabis oil helped him a lot on his "bad" days. Everyone is different and have different level of tolerance and may have different side effects or even none. Hopefully it will be a smooth one for your hubby.

Are you saying that your husband get Oxaliplatin in his pump?
I have only heard about 5-FU been given like that.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

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GrouseMan
Posts: 888
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: 5FU infusions

Postby GrouseMan » Wed Jan 30, 2019 5:32 pm

Ya - I was going to ask about this because its not the normal protocol. Usually one takes home the 5-FU/Leucovorin in the pump and the Oxaliplatin is done at the infusion center. Mainly because if one has an issue - its with the Oxy rather than the 5-FU and they like to keep an eye on you while you get it.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: 5FU infusions

Postby mpbser » Wed Jan 30, 2019 5:59 pm

Thanks for the details descriptions, everyone. They don't sound as bad as we originally thought they would be. I had been wondering about whether to ask if my husband could do the oral form, Xeloda, again as he had done very well on Xelox, but I don't think he will be inconvenienced by the pump. I also was curious about the pathway the oral form takes compared to the pump form. I know this has been discussed ad nauseum on this forum but for those who are interested in the circulation of 5FU, i.e. where it travels from the port, it goes as follows:

Left internal jugular to the left brachiocephalic vein to the superior vena cava to the right atrium to the right ventricle. The right ventricle pumps blood into the pulmonary circulation via main pulmonary artery. The main pulmonary artery splits into the right and the left main pulmonary artery. The left main pulmonary artery is connected to the concavity of the proximal descending aorta. The descending aorta is part of the aorta, the largest artery in the body. The abdominal aorta is the largest artery in the abdominal cavity. As part of the aorta, it is a direct continuation of the descending aorta. The abdominal aorta supplies blood to much of the abdominal cavity. The celiac artery is the first major branch of the abdominal aorta. The celiac artery supplies oxygenated blood to the liver.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

cgb13
Posts: 8
Joined: Tue Aug 07, 2018 4:08 pm

Re: 5FU infusions

Postby cgb13 » Wed Jan 30, 2019 6:03 pm

I can echo what many of the other posters said. I just finished 8 rounds of FOLFOX. I would typically get fluids and the Oxalplatin over about 4-5 hours. Then I got a 5-FU bollus infusion. After that, they hooked my port up to the the take home pump. I got a new pump halfway through - it was quieter than the old one, but larger. The cords can get annoying, especially if you toss and turn at night. But, for the most part, it wasn't much of an inconvenience. Now, the drug that's pumped into me, that's another story...
35yo male - father of 1 (infant)
Dx Stage IIIc - T3N2M0 8/15/18
8 bi weekly FOLFOX treatments done 12/11/18
1/23/19 - 3/1/2019 - Radiation + Xeloda (4,000 mg per day - 4 pills in morning and evening) - 28 days

Pat
Posts: 25
Joined: Fri Jan 15, 2016 6:21 pm
Facebook Username: Pat Henderson Sins
Location: Southern California

Re: 5FU infusions

Postby Pat » Wed Jan 30, 2019 6:52 pm

I am clumsy and afraid the tube connecting the Rx to my port would get pulled. I sewed a pocket inside a couple shirts. The infusion bulb and tube were both safely inside my shirt.
57 yr old. Dx 9/2015, Stage IIIc T4aN2bM0 BRAF/V600e
10/2015 Right Hemicolectomy
High Grade, poorly differentiated Adenocarcinoma of the Hepatic Flexure
25 of 30 lymph nodes cancerous extranodal extension
Barrett's Esophagus
11/2015 Folfox 12 cycles stopped 3x for month each due to low blood counts
7/30/2016 - finally finished Folfox
9/15/2016 - Clear colonoscopy, 1 sessile polyp
9/7/2017 - clear colonoscopy, next due in 3 yrs

Nohogirl
Posts: 116
Joined: Sun Oct 14, 2018 12:15 am

Re: 5FU infusions

Postby Nohogirl » Wed Jan 30, 2019 9:22 pm

LPL wrote:
Nohogirl wrote:My husband gets a pump too. His is on FOLFOX regimen
Every two weeks. He gets his chemo (Leucovorin and 5FU infusion on Monday at the oncolosgist's office for about 4 hours. Then they connect him to the pump to bring home through which he receives his Oxaliplatin infusion directly into his port. The pump is programmed so it knows to pump the drug every few minutes or so. It has an over the shoulder strap so your husband can walk around with it with no hassle. We go back two days later (on Wednesday) for disconnect. After they remove the pump, my husband gets his hidriation through his port again at the doctors office which takes another 2-3 hours. This is the day when his side effects normally kick in and they last for about 3-4 days. The following week e is back to his normal self. So we and our families plan all our family things on his no chemo week. Overall it wasn't as bad and scary as we thought it would be. My husband is almost done and and thankfully his went without any delays, major issues or problems except the normal side effects (nausea, fatigue, headaches, loss of appetite). Cannabis oil helped him a lot on his "bad" days. Everyone is different and have different level of tolerance and may have different side effects or even none. Hopefully it will be a smooth one for your hubby.

Are you saying that your husband get Oxaliplatin in his pump?
I have only heard about 5-FU been given like that.

LPL thats what we were told. It might be the other way like you said. And i just misunderstood. Anyhow i can double check when we go back on Monday.
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Pet Scan. NED
08/19 Pet Scan NED
08/19 Colonoscopy Clear

User avatar
ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: 5FU infusions

Postby ginabeewell » Thu Jan 31, 2019 12:32 am

I'm so interested to read that some centers don't allow the patients to do their own disconnects. It is so easy! Hopefully MSK will be ok teaching you how to do it.

In answer to your question: my scan and surgery will be at MSK. I'll go to MSK monthly to get the pump filled and get my systemic chemo at NW.

I was glad to hear that Dr Stein at NW and Dr Kemeny at MSK connected and aligned on treatment. Dr Stein noted that Dr Kemeny had a "singular skill set unlike anyone else in the country." I was a bit worried there might be a bit of a power struggle there but so far so good, seems that Dr Stein respects her as the pump and as a doctor overall. Feeling really good about the team.

Looks like our surgeon will be Kingham vs D'Angelico given scheduling. Seems like both get high marks here, so think we are in good hands.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: 5FU infusions

Postby heiders33 » Thu Jan 31, 2019 6:21 am

Yes, MSK absolutely lets you disconnect on your own. They sent me home with detailed instructions and all the supplies I need. I get connected on Wednesday and disconnect on Friday morning. It takes me about ten minutes to disconnect. You just have to follow each step in order to prevent infection and ensure that your port is flushed.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy


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