A little advice port removal stage 4

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Alreadyhere
Posts: 89
Joined: Wed Oct 03, 2012 6:38 pm

A little advice port removal stage 4

Postby Alreadyhere » Mon Dec 10, 2018 4:01 pm

Hello everyone DH has been stable and off treatment for over a year following several years of treatment, stage 4 diagnosis,spread to metastatic lymph nodes and tissues along the spine and Aditya, etc. His oncologist suggested today to remove his port. We were in such a hurried state that we didn’t stop to ask more questions about it. Is it normal to remove a port with a stage 4 diagnosis? He has moved him to once a year scans as opposed to six months as he’d been doing but the dr said it’s okay because he has been stable for a year and 2 months. Does this seem to be jumping the gun a little bit or about normal? Does this mean the dr thinks the cancer will not resume and stay dormant aka potential cure and that’s why port will not be needed? We are just trying to figure out any reasoning for this and want to make sure it’s the norm.
DH Diagnosed 2012 @ 34 stage iv
Resection/Folfox
Confirmed distant LN
Radiation
More distant LN
Folfiri + Avastin
Stable - No shrinkage or Growth
Erbitux only for past 2 years
More distant lymph nodes
Radiation
Stable and off treatment since Fall 2017.

Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: A little advice port removal stage 4

Postby Gravelyguy » Mon Dec 10, 2018 5:53 pm

I am not sure what normal is but I got my port out 6 months post chemo. I couldn’t wait to get it out and my oncologist said go for it.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

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

Re: A little advice port removal stage 4

Postby juliej » Mon Dec 10, 2018 6:11 pm

Usually ports aren't removed if a patient is still undergoing treatment (or might resume treatment in the future) unless the port is giving them problems (soreness, infection, hard to access, etc.). I think some oncs like to recommend port removal in stable patients because they think it will make the patient feel more "normal". It also save the time and effort of coming in to flush the port every 4-6 weeks to maintain its efficacy.

Your DH is doing absolutely fantastic! Stability for 4 years is awesome! Clearly his immune system is keeping things at bay. :D :D :D So if there's no sign of chemo in the near future, it might be worth it psychologically to have it removed, realizing (eyes wide open) there is a possibility he might need to have another one put in some day. My vote is to free him of the port!

Have you looked into immunotherapy? He seems like a good candidate if there's a trial that involves lymph node spread. Or has your onc considered a continuous low-dose Xeloda (used in a metronomic way)?

Also, make sure he keeps ups his bloodwork even though he's moving to yearly scans. Try to include LDH and AFP blood tests into the regular mix since they work well for tracking nodes.

Hope this helps!
Juliej
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


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