Port Out...for now

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boxhill
Posts: 737
Joined: Fri Apr 06, 2018 11:40 am

Port Out...for now

Postby boxhill » Sun Nov 22, 2020 5:16 pm

My port was removed on Friday. It had stopped functioning properly during the spring and since I've been off Keytruda since June my onc thought we might as well remove it.

It's weird. I know that some people feel like they are done with cancer when their port is pulled. I don't feel able to enjoy that sense of freedom. Stage IV, after all...you never know. No one really knows how long a Keytruda remission might last.

We grow accustomed to living with the uncertainty the threat. I'm wondering when other people got used to thinking of themselves as NOT having cancer, or if they ever did.

I have another MRI scheduled for Dec 1st. I guess it is just one scan at a time for now.

I hasten to add that I feel incredibly lucky. I realize it afresh every time I read a post from someone who is in treatment. I think of each of you every day.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
All MRIs NED

User avatar
beach sunrise
Posts: 517
Joined: Thu Mar 05, 2020 7:14 pm

Re: Port Out...for now

Postby beach sunrise » Sun Nov 22, 2020 6:27 pm

Such a great milestone! I hope to join you sometime.
Right now I am trying to get someone to flush mine so it doesn't malfunction. My surgeon said he will do it.
I want this thing out of me so bad but like you need to keep for a while just in case.
Good luck on your scan. Try not to let it stress you out. Just think "Its Christmas time and nothing will spoil it." Let us know when you know.
Happy Thanksgiving to you and family!
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Lee
Posts: 6205
Joined: Sun Apr 16, 2006 4:09 pm

Re: Port Out...for now

Postby Lee » Sun Nov 22, 2020 7:07 pm

beach sunrise wrote: . . . I want this thing out of me so bad but like you need to keep for a while just in case.
!


This was many years ago, my Onc had to fight my insurance company to get my port put in. I took my 1st infusion in my left hand. No fun, I was not allowed to use that left hand for several days. Had to sleep a certain way. I finally got my port put in a day or two prior to my 2nd infusion. Anyway, I was willing to keep as long as possible, just in case. About 2 yrs later, I was having a mamo when it somehow got moved, could no longer be accessed. Was taken out.

There was a women here, years ago, had her 1st port removed, 6mth later, cancer came back. tried to put 2nd port back in same area. Scar tissue was impossible to work with, port was trouble from day one. Finally had to put another one on other side of body, with understanding it does not come out.

Yes they are annoying, me the area next to my neck was the most exposed, wore the neck portion of car seat belt behind me. Belt would cut into tubing inside my neck.

Good luck

Boxhill, congrats on getting you port out.

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!

User avatar
beach sunrise
Posts: 517
Joined: Thu Mar 05, 2020 7:14 pm

Re: Port Out...for now

Postby beach sunrise » Sun Nov 22, 2020 7:44 pm

Whoa, my goodness!!!
It was recommended for me to keep it 5 yrs. Flush every 6 wks. Mine hasn't been flushed since folfox ended in June and its got me worried. The chemo place I go to keep just saying onc didn't order it so I asked my surgeon for help since its been 6mths. He said absolutely...
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Lee
Posts: 6205
Joined: Sun Apr 16, 2006 4:09 pm

Re: Port Out...for now

Postby Lee » Sun Nov 22, 2020 8:32 pm

I would ask the Onc about flushing it. I was suppose to get my flushed every 4-6 weeks. You could push to 8 weeks in emergency situation. When nurse could not access it after mamo, I saw my Onc next & that is when I learned they were taking it out. It had been inside of me about 3 yrs. Onc assured me we still have 2weeks & would be out by then. Less than a week later it was out. I would have kept it in 5 yrs if I could have. Please understand FOLFOX was experimental & those ports were kinda new.

Understand, they have improved these ports a lot since mine.
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!

User avatar
CRguy
Posts: 10327
Joined: Sun Feb 10, 2008 6:00 pm

Re: Port Out...for now

Postby CRguy » Mon Nov 23, 2020 12:16 am

boxhill wrote:My port was removed on Friday.

Congratulations on being DE-ported !!!! :mrgreen:

Cheers and best wishes on the Journey
moving forward !
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

StrongEnough
Posts: 12
Joined: Tue Nov 10, 2020 9:15 pm

Re: Port Out...for now

Postby StrongEnough » Mon Nov 23, 2020 2:21 am

Congrats Boxhill! I imagine it must feel weird, like you said you can't pretend it's gone forever , but maybe that's the point. Appreciating that it's gone right now. Good luck on the scans

User avatar
horizon
Posts: 1636
Joined: Tue Apr 12, 2011 10:10 pm

Re: Port Out...for now

Postby horizon » Mon Nov 23, 2020 10:03 am

Hope it's out forever boxhill!

Lee wrote:I took my 1st infusion in my left hand. No fun, I was not allowed to use that left hand for several days. Had to sleep a certain way. I finally got my port put in a day or two prior to my 2nd infusion. Anyway, I was willing to keep as long as possible, just in case.


Oh wow, that was exactly me. First infusion in left arm and they couldn't access the vein. Took many, many retries during which I got more and more freaked out because I hate needles. Started getting numbness in my arm during the infusion. That erased all doubt I had about getting a port.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?

User avatar
horizon
Posts: 1636
Joined: Tue Apr 12, 2011 10:10 pm

Re: Port Out...for now

Postby horizon » Mon Nov 23, 2020 10:04 am

beach sunrise wrote:Whoa, my goodness!!!
It was recommended for me to keep it 5 yrs. Flush every 6 wks. Mine hasn't been flushed since folfox ended in June and its got me worried. The chemo place I go to keep just saying onc didn't order it so I asked my surgeon for help since its been 6mths. He said absolutely...


I would keep pushing. Like Lee I was told 8 weeks if I had to but got it flushed every 6.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?

boxhill
Posts: 737
Joined: Fri Apr 06, 2018 11:40 am

Re: Port Out...for now

Postby boxhill » Mon Nov 23, 2020 11:03 am

I too was told flushing every 6 weeks. Beach Sunrise, sounds like your oncologist has dropped the ball, big time!

My port was always very comfortable, after the initial healing period. On Friday, the surgeon said that some people have a lot of scarring around the port and thus have to go to the other side if they need a new one, while others have almost none at all and can co back to the same side. I asked him where I fell on the spectrum, and he said that while there was some scarring I could still have a port on the same side, if necessary.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
All MRIs NED

User avatar
beach sunrise
Posts: 517
Joined: Thu Mar 05, 2020 7:14 pm

Re: Port Out...for now

Postby beach sunrise » Mon Nov 23, 2020 11:42 am

I have asked for the last time at my cancer center so asked the surgeon and he said yes absolutely. I get very sick and tired of having to repeat myself without any action on the other side. So, screw it and move on :) I shouldn't have let it go on this long (big Sigh)...Be your own advocate!!!!
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

User avatar
CRguy
Posts: 10327
Joined: Sun Feb 10, 2008 6:00 pm

Re: Port Out...for now

Postby CRguy » Mon Nov 23, 2020 9:54 pm

beach sunrise wrote:...Be your own advocate!!!!

DAMN that sounds like something I woulda' said :shock:
Oh wait ... I DID :mrgreen:

Glad it resonates with you homie !!!!
YES, BE YOUR OWN ADVOCATE :twisted: :evil: :!:
ALWAYS !!!!!

The whole port flush issue centers on what type of port you have, and what your recheck schedule is
... AND with which Doc or department.

Some are good a keeping in the loop
SOME ... are really shitty at patient follow up

BE the squeaky wheel

Cheers and Harmony
CRguy on the Journey
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

boxhill
Posts: 737
Joined: Fri Apr 06, 2018 11:40 am

Re: Port Out...for now

Postby boxhill » Thu Dec 03, 2020 2:14 pm

12/1/20 MRI results: everything the same. Still NED. :D
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
All MRIs NED

User avatar
beach sunrise
Posts: 517
Joined: Thu Mar 05, 2020 7:14 pm

Re: Port Out...for now

Postby beach sunrise » Thu Dec 03, 2020 2:22 pm

I have been waiting waiting on your result!!! YAY YAY YAY...Best news I've heard all day!
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

utahgal7
Posts: 56
Joined: Fri Sep 11, 2020 12:04 pm

Re: Port Out...for now

Postby utahgal7 » Thu Dec 03, 2020 3:12 pm

Congratulations on the NED results of your MRI! Now, you can enjoy the holidays without having to worry about it.
02/20 Rectal Cancer dx - 2 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait); 03/21 CT scan; stable lung nodules (2)


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