Newbie here

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plastikos
Posts: 351
Joined: Wed Jan 14, 2015 6:09 am

Newbie here

Postby plastikos » Mon Jan 19, 2015 12:51 pm

Just wanted to introduce myself. I'm a 37 y/o doctor (plastic surgeon hence the handle). Recently diagnosed with Stage IV Colon Cancer with isolated liver mets last November 2014. Underwent a right hemicolectomy with resection of the left hepatic lobe. Surgical pathology showed mets to 2/23 nodes and 2 <2cm mets to the liver. Surgical margins were negative for tumor. Onc orderes a postop PET scan early at 3 weeks which showed some areas of uptake in the right lobe not seen on the preop PET CT which could either be mets or postop changes but we decided to err on the side of being cautious. Because I am Kras wild type I was started on Folfox plus Erbitux and I am currently on my 3rd session. Recently in between my 1st and 2nd round of chemo another doctor suggested I have a liver MRI done which showed no suspicious lesions which surprised everyone in light of my postop PET. Everyone including my onc seemed pleased.

Been lurking around the past few weeks and hoping to contribute more. Places like this provide so much support and inspiration to people like us regardless of stage. God bless everyone.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED

Delinda2
Posts: 483
Joined: Fri Jan 16, 2015 6:28 pm
Location: Washington state

Re: Newbie here

Postby Delinda2 » Mon Jan 19, 2015 1:35 pm

Welcome, although I'm so sorry we had to meet for this reason. I'm sure you'll find this group to be informed, supportive, loving, and very funny. It's been such a blessing for me to have people who really know what having cancer does to your body, mind, and daily life. Good luck with your treatment & be sure to let us know how it goes. Take care. XXOXO, Delinda
63 yrs,wife & mom
4/14 dx colon cancer,3C,9/22 nodes
Lymphatic,venous,&perineural invasion
<1cm margin,poorly differentiated
6/14 colostomy take down
7/14 FOLFOX w/9 Nulasta shots
2/16 dx new primary of sigmoid colon
6/16 surgery-rescection on sigmoid, total hysterectomy, temp ileo, stage 4
"I AM the storm."

bitchslapped
Posts: 1538
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Newbie here

Postby bitchslapped » Mon Jan 19, 2015 1:41 pm

Welcome aboard plastikos. Yes, a cancer dx tends to form a kinship for us all here in support, encouragement, education & lively debates from time to time. You will find varied backgrounds of members here, some very knowledgeable patients/caregivers who have really been through the gamut of the human experience w/cancer, some w/a science background + a couple of docs too. Unfortunately, we are seeing more & more members in your age bracket here that none of us like to see. I would encourage you to fill out a "signature" in your profile box as most of us have done if you plan on sticking around. It provides an "at a glance" reference for members in addressing any questions/input you may post.

Best Wishes
Bitchslapped
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

DarknessEmbraced
Posts: 3817
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Newbie here

Postby DarknessEmbraced » Mon Jan 19, 2015 1:47 pm

Welcome to the board but sorry for the reason you are here. There are so many wonderfully supportive, caring and knowledgeable people here! I find this board immensely helpful!
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Don.in.Dallas
Posts: 179
Joined: Sun Aug 31, 2014 10:43 pm
Location: Dallas, Texas USA

Re: Newbie here

Postby Don.in.Dallas » Mon Jan 19, 2015 4:48 pm

Welcome! You are way too young for this. You are well informed, your treatments are underway and all the right things seem to be happening.

My one personal note is to ask your onc to be aggressive in treatment. If a side effect affects only your comfort, perhaps it can be ignored. Colon cancer is a killer. Don't play around.

Best wishes in your journey!
Male 56 at DX 05/14
05/14 Resection, 3.2cm sigmoid CRC Stage IIIb, 2/17 nodes, T3N1M0
06/14 PET scan clear, portacath install
06/14 Begin FOLFOX6 12x, End 01/15
09/20 Still NED!
----
Previous: Laryngeal cancer
33 x rad
NED since 12/09

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teacher49
Posts: 189
Joined: Sun Aug 14, 2011 10:34 am

Re: Newbie here

Postby teacher49 » Mon Jan 19, 2015 5:23 pm

Welcome to this board, plastikos. Sorry you had to join all of us. You and many others on this board are way too young for all this #&%*. In my case, I was 60 when diagnosed and I regretted that I had not done a scope at age 50.

But the good news is that I'm still here at age 65, I've remained full time employed as college professor...and I've gotten through all the modules of treatment that the medical profession could throw at me.

Many here on this board can help you get through some of the little day by day coping questions that maybe your ONC or surgeon blew off (sorry Doc :roll: ).
F, 62,CRC, Adenoca, mod diff
cT3N0M0 Stage IIA May 2011
chemorad
APR on 9/27/11 Margins & Nodes Neg
comp.after surg/2 pelvic abscesses/Sepsis/Hosp 40 days
10th FOLFOX 6/6/2012 feet went numb
5FU to finish
NED 8/11/2021

User avatar
Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: Newbie here

Postby Bev G » Mon Jan 19, 2015 7:16 pm

Hi Doc,

Welcome to your new on-line family. It's disgusting that you were diagnosed stage IV, butt we're glad to have you join us.

As a physician I know that you know you have what is called oligometastic disease, and if you have to be stage IV, that's the kind to have. I was diagnosed stage IV at 55 years of age in 12/09. I had a colon resection in 12/09, and my liver resection in 4/10. My 6 x 5 liver lesion was in the posterior caudate lobe, so it was a bit of a bear to get to, butt well worth the difficulties. An amazing liver transplant surgeon did the resection, so he wasn't too concerned about my tumor being just millimeters away from my IVC. I have had NO new cancer since the liver met was removed, and reached my 5 year mark since diagnosis last month.

I know it must be tough for you being on the other end of a scalpel, and on the receiving end of so much health care that I know you wish you didn't need. My husband, who is a maternal-fetal medicine specialist was diagnosed with stage III lymphoma a couple of years ago. He was resistant to all chemo and never went into remission. Ultimately he got a stem cell transplant at Dartmouth last Spring and is currently doing pretty well. He has residual, apparently permanent, peripheral neuropathy as a result of several platinum-based chemos. He doesn't think he will ever be able to operate again. I suspect you have considered that as a potential problem from the FOLFOX. I wonder if you or your docs have considered treating you with FOLFIRI instead of FOLFOX to mitigate some of that risk?

Anyway, welcome again. You probably have all the medical aspects well in-hand, but we'll be pleased to offer tips, emotional support and encouragement wherever possible.

Best wishes to you,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Newbie here

Postby Steph20021 » Mon Jan 19, 2015 9:22 pm

Plastics, I just wanted to say hi and welcome. Sorry you are here too. I am fairly new to the stage IV diagnosis myself, despite being in the system for a year. Whereabouts are you being treated? I am wishing you all the best.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

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singingholly
Posts: 1133
Joined: Thu Feb 27, 2014 3:37 am
Location: Northern Italy

Re: Newbie here

Postby singingholly » Mon Jan 19, 2015 9:57 pm

Glad and sorry as well to have you on board...
Olivia
Dec2011 sigm IIIst res T3N1(2/18)M0 Xelox
Oct2012 5liv.mets Dec 2012 liv.res
Jan2013 1liv.met Folfiri+avastin
Jul2013 liv.res Folfiri+/av
Feb2014 10+2lu.mets & 1abd node Folfoxiri+SBRT
Sep2014 Res rx l. BUT spot on diaph:SBRT
Dec2014 3+6lu.mets.Immuno

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: consider FOLFIRI + cetuximab ?

Postby O Stoma Mia » Tue Jan 20, 2015 12:45 am

Bev G wrote:Hi Doc...My husband ... doesn't think he will ever be able to operate again. I suspect you have considered that as a potential problem from the FOLFOX. I wonder if you or your docs have considered treating you with FOLFIRI instead of FOLFOX to mitigate some of that risk? Bev

Hello plastiko -

Welcome to this board. It's terrible that you have to be here at such an early age, but it's good that you have registered here so soon and that you have already updated your signature. This will enable you to connect with specific members here who can give you support in your particular diagnostic context (mCRC - KRAS wild).

Although I do not have a medical background, I would like to support the suggestion made earlier by Bev G, namely that you consider a FOLFIRI based regime rather than a FOLFOX-based regime as a first-line therapy for your type of mCRC

The NCCN organization publishes a list of recommended first-line ('standard-of-care') therapies for all kinds of colon cancer at different stages, and you can download a copy of your own to review at your leisure.(You must first register on their site to do this.) The document you would want to access is:

NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) Colon Cancer, Version 2.2015, 143pp

http://www.nccn.org/professionals/physician_gls/pdf/colon.pdf

This is a 143 page document, and on pages 25-27 the document gives the decision tree for deciding first line therapy for mCRC patients. What you see there is that the chemo regimen that they put you on is indeed one of the recommended ones:

FOLFOX + cetuximab (for KRAS/ WT gene) -- on p 25, lower left branch of decision tree

However, it is not the only one available in your case, and on the following page you will find the regimen that Bev G is referring to. This one is:

FOLFIRI + cetuximab (for KRAS/ WT gene) -- on p 26, lower left branch of decision tree

The fine detail of these regimens (dosage, timing, cycles, etc.) is given later on page 30 (upper right-hand panel) and page 31 (lower left-hand panel), respectively.

In your case, I think the second of these regimens would be preferable because it would allow you to escape the long-term effects of permanent peripheral neuropathy that usually accompany any regimen containing Oxaliplatin, i.e., any regimen containing OX in the title.

So, my suggestion would be to print off the relevant pages of the NCCN Guideline and discuss this with your oncologist and see what might be the best course of action for you to take.
.
OSM

michelle c
Posts: 1929
Joined: Wed Dec 02, 2009 3:58 am

Re: Newbie here

Postby michelle c » Tue Jan 20, 2015 8:54 am

Hello and welcome! Sorry that you had to join us but you will find lots of support, encouragement and plenty of good advice here. I felt so alone when I was diagnosed even though my family and friends were supportive - here we get it and we understand each other.

Like others have said, FOLFORI might be better for you as there is no peripheral neuropathy associated with it. My colorectal surgeon told me that if he is ever diagnosed, he wouldn't have FOLFOX as he wouldn't be able to operate if his fingers were affected.

All the very best to you and please return to let us know how you are going, to receive support, to ask questions, to vent etc etc
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

plastikos
Posts: 351
Joined: Wed Jan 14, 2015 6:09 am

Re: Newbie here

Postby plastikos » Wed Jan 21, 2015 5:43 am

Thank you everyone for the welcome. Will take your suggestions into consideration and talk to my onc.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED


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