Port Out...for now

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

Re: Port Out...for now

Postby Lee » Thu Dec 03, 2020 4:00 pm

Congratulation, may you always reside in NEDville,

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!

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

Re: Port Out...for now

Postby boxhill » Fri Aug 27, 2021 3:15 pm

August/21 MRI results: still NED.

Next one in December.

Interestingly, I just realized that I could now read all of my visit notes, and discovered that from the first visit until now my oncologist's notes said Prognosis: Guarded, Treatment Plan: Palliative. I'm glad I didn't see it back then! :shock:

Of course, this was and is technically accurate, and hasn't stopped him from doing his best to get me to NED...and beyond, if possible.
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

Nor Cal
Posts: 36
Joined: Sun Dec 06, 2020 8:18 pm

Re: Port Out...for now

Postby Nor Cal » Sat Aug 28, 2021 11:46 am

boxhill wrote:August/21 MRI results: still NED.


Congrats!
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. BRAF mutation. CEA 120
July 2020 - September 2021 20 cycles chemo (FOLFOXIRI x9, FOLFIRI x9, 5-FU x2) + Avastin
December 2020 - February 2021 Radioembolization, Chemoembolization x2

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

Re: Port Out...for now

Postby horizon » Sun Aug 29, 2021 8:08 am

boxhill wrote:August/21 MRI results: still NED.

Next one in December.

Interestingly, I just realized that I could now read all of my visit notes, and discovered that from the first visit until now my oncologist's notes said Prognosis: Guarded, Treatment Plan: Palliative. I'm glad I didn't see it back then! :shock:

Of course, this was and is technically accurate, and hasn't stopped him from doing his best to get me to NED...and beyond, if possible.


Well after my surgery/chemo was done my doctor told me he was initially "gravely concerned" when he saw the scans of my liver mass, which ended up being benign. If he would have told me that at the time I would have lost it for sure.
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?

Rock_Robster
Posts: 583
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Port Out...for now

Postby Rock_Robster » Mon Aug 30, 2021 5:21 am

horizon wrote:
boxhill wrote:August/21 MRI results: still NED.

Next one in December.

Interestingly, I just realized that I could now read all of my visit notes, and discovered that from the first visit until now my oncologist's notes said Prognosis: Guarded, Treatment Plan: Palliative. I'm glad I didn't see it back then! :shock:

Of course, this was and is technically accurate, and hasn't stopped him from doing his best to get me to NED...and beyond, if possible.


Well after my surgery/chemo was done my doctor told me he was initially "gravely concerned" when he saw the scans of my liver mass, which ended up being benign. If he would have told me that at the time I would have lost it for sure.

We should start a thread for “things you’re glad your doctor didn’t tell you at the time”.

My second liver resection had an involved margin due to proximity to the hepatic vein requiring an awkward removal, but my surgeon was confident it was just to do with the way the pathology was reported. My oncologist wrote a cautiously positive letter about it afterwards. Now over 18 months later and I’m still NED (so looks like he was right about the margin), I mention to my onc that I had been anxious about the R1 result… he just eyeballs me and says “your anxieties were not unfounded…”
Last edited by Rock_Robster on Mon Aug 30, 2021 10:58 pm, edited 1 time in total.
39M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1, Dec-20: 2.3, Mar-21=2.5, Jul-21=3.1
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection
02/20 Ileo reversed
03/20 NED (CT/PET/MRI/scope) - latest scans Jul-21

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

Re: Port Out...for now

Postby horizon » Mon Aug 30, 2021 1:11 pm

Rock_Robster wrote:We should start a thread for “things you’re glad your doctor didn’t tell you at the time”.

My second liver resection had an involved margin due to proximity to the hepatic vein requiring an awkward removal, but my surgeon was confident it was just to do with the way the pathology was reported. My oncologist wrote a cautiously positive letter about it afterwards. Now now over 18 months later and I’m still NED (so looks like he was right about the margin), I mention to my onc that I had been anxious about the R1 result… he just eyeballs me and says “your anxieties were not unfounded…”


Seriously. I'm actually still in awe of his "poker face". I didn't pick up on it *at all*. He was all "ho hum, let's gets some others tests scheduled to look at this more closely". I need to thank him again for saving me some unnecessary agony.
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?


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