Tom marsilje

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Mercy110
Posts: 118
Joined: Wed Aug 16, 2017 12:13 am

Re: Tom marsilje

Postby Mercy110 » Thu Nov 16, 2017 12:17 am

I am so sorry to hear the news though we don't really know each other. I remember reading his story from the club, which is rely a couraging one and definitely made me believe that cancer is not the end of the world.
He surely fight so hard as a warrior in the journey. Prayers to Tom and his family. May God bless his soul forever.
My Mum (age 56), NRAS-mutate Q61R (from HK)
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda Only. Increasing CEA. CT: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin, stable CT
2018-03 to 05: Folfox Allergy, Folfiri (with Avastin since Oct)
2019: CEA:178, started Irinotecan+Zaltrip+TS-1, 25 times radio with xeloda
2020: CEA up, Stivarga for 6 months
2021: CEA up, 7L O2 and 24-hour morphine, on pc care
At peace 2021.4.14

Lovenothate
Posts: 38
Joined: Tue Aug 16, 2016 3:13 am
Facebook Username: Emily.guzman

Re: Tom marsilje

Postby Lovenothate » Thu Nov 16, 2017 12:37 am

Heartbroken... amazing advocate and rock for a lot of us.
daughter to DM dx Stage IV CRC @47 July 2016
total hysterectomy b/c ovarian mets abscites 6/16
Colostomy
Folfox 7/16
Lung spots 2mm each 9/16
Xeloda & Avastin 1/17
Shrinkage to lungs spots! 4/17
Break from Avastin/ Xeloda continued 7/17
Omentum mets/ lungs mets stable(possibly not malignant)
Folfiri 8/17
1 lung spot all along-clear abdomen scans chemo break until 4/4/17

menreeq
Posts: 70
Joined: Fri Jun 30, 2017 10:26 am

Re: Tom marsilje

Postby menreeq » Thu Nov 16, 2017 2:00 am

I didn't know him but I read his posts and so appreciated what he had done and was doing for people like me. My heart is heavy. Sending love to his family and to all who loved him.
Stage IIA rectosigmoid CC (T3N0M0)
Dx 6/5/17 @age 41ls
Workup: c-scope, EUS, rectal MRI, CT C/A/P
AdenoCA 5.5cm, WHO Grade 2, 0/22 LN, no distant mets
CEA 1.9 (6/5/17), 0.8 (2/28/18), 1.0 (9/17/18), 1.1 (4/16/19), 1.0 (9/24/19), 1.7 (7/8/20)
No lymphovasc/perineural invasion, clear margins
MSI intact, OncotypeDx RS 7
Lap sig colectomy 6/23/17, no ileo/colostomy
Genetics neg for mutations, 4 VUS
Xeloda monotherapy 8/13/17-1/22/18
PET/CT 3/21/18 NED
CT C/A/P 9/17/18 NED, 3/8/19 NED, 9/19/19 NED, 5/13/20 NED

testing765
Posts: 324
Joined: Tue Aug 19, 2014 9:41 am

Re: Tom marsilje

Postby testing765 » Thu Nov 16, 2017 2:07 am

Tom shared his personal experience with me. And he was always willing to answer any question I presented to him, a kind soul. God bless him.
male-age 44 at diagnosis
8/14-clnscopy
8/14-CT scan,no mets
9/14-left colectomy,CEA 2.2 before surgery
pT2pN2bpM0
3 cm tumor in dscnding colon
7/23 pos LNs
low grade MSI stable
10/14-start folfox
1/15-CT & PET scan and sigmdoscopy- no mets
3/15-finish folfox
9/15- clnscopy- 3 polyps removed
10/15- CT scan, NED
10/16- CT scan, NED, CEA 1.6
10/17- clnscopy- 4 polyps removed, CT scan NED, CEA 1.8
10/14 1.9; 4/15 2.8; 5/15 2.4; 9/15 2.8; 12/15 3.1; 1/16 3.0; 4/16 2.5; 7/16 2.5; 10/16 1.6; 1/17 1.9

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

Re: Tom marsilje

Postby Pat » Thu Nov 16, 2017 2:43 am

Such dignity and intelligence. His memory will continue to be my source of hope.
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

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Tom marsilje

Postby MissMolly » Thu Nov 16, 2017 2:49 am

When I saw Tom’s name as the title of this thread, my heart went cold.

The Heaven’s stars shine brighter in the deep night sky tonight with Tom’s spiritual inclusion.

It is said that God/Higher Power sprinkles the earth with physically-bodied angels who exist and live amongst us on this earth. I have to believe that Tom was one of God/Higher Power’s ambassador angels in his work on earth.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

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

Re: Tom marsilje

Postby plastikos » Thu Nov 16, 2017 3:52 am

Rest in peace Tom. We never met but you made an impact in my life and I am sure in others lives as well. You will be remembered.
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

SweetC80
Posts: 103
Joined: Fri Sep 01, 2017 1:28 pm

Re: Tom marsilje

Postby SweetC80 » Thu Nov 16, 2017 11:30 am

So heartbroken. What an advocate. May he rest in peace.
My Mom
12/16 Stage IIIb Rectal Ca CEA 1.2
1/17-2/17 Chemoradiation CEA 4.4
5/17 Entire Colon, Rectum & Anus removed Perm Ileostomy Bag
7/17 FOLFOX
9/17 Stage IVb 9cm Liver Met & 7mm Lung Nodule CEA 197
9/17 FOLFIRI CEA 160
10/17 Confirmed KRAS Pos CEA 210
11/17 Met growths Liver 10cm & Lung 8mm CEA 425
12/17 FOLFOX again Met growths Liver 13cm & Lung 1cm CEA 405
12/17 Xifaxan due to Hepatic Encephalopathy
12/17 New 2cm liver Met
1/18 CEA 992
2/8/18 Passed Peacefully

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

Re: Tom marsilje

Postby GrouseMan » Thu Nov 16, 2017 2:03 pm

Tom fought a mighty battle. With his personal knowledge of cancer research and his connections he helped many here to better understand this disease, and maybe find new ways for themselves to fight on. I think he understood better than most what he was in for but remained optimistic as one could be under the circumstances. He and I were kindred spirits in the sense I was also a cancer researcher, and knew what my wife was up against. He and I both I am sure for our loved ones sakes tried mightily to remain upbeat if not maybe even living in a fantasy world or in denial perhaps just a little trying to reassure our loved ones all would be fine. I am sure it was harder for him than me. We will miss his insightful discussions. I particularly will miss having another good solid rational scientist to correspond with. I always looked forward to his posts. Unfortunately the science he and I looked forward to the most was just to slow a coming into practice.

Rest in Peace my Friend.

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

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

Re: Tom marsilje

Postby bitchslapped » Thu Nov 16, 2017 5:41 pm

Stunned to read this. My deepest condolences to Tom's wife, daughters, family & friends. It's mind boggling of all he has accomplished since joining Colon Talk a couple of years ago, when I remember he was just beginning his blog, deciding to make it public. No stone was left unturned by DK37. An incredible legacy he has left his family to be proud of aside from his role as loving family man.

His presence, energy will be missed in the mCRC community.


BS
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

kiwiinoz
Posts: 1169
Joined: Thu Jan 03, 2013 11:44 pm

Re: Tom marsilje

Postby kiwiinoz » Thu Nov 16, 2017 7:23 pm

Wow, that was actually very unexpected and is a sad loss.
Hope you have relief from the pain now Tom
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - August 2020
Port Out 26 March 2015

jortego128
Posts: 288
Joined: Sat Aug 15, 2015 7:47 am

Re: Tom marsilje

Postby jortego128 » Thu Nov 16, 2017 9:00 pm

I'm at a loss, heartbroken, my God-- I can't believe it. I knew things were bad over the last week due to his silence on FB, but I didnt expect this to happen so soon. Tom was a true cancer warrior, a brilliant doctor and scientist, and the absolute best advocate for CRC awareness and treatment on the planet. His posts were some of the first I had seen on this forum when I first came here just over 2 years ago when my beloved mom was diagnosed. DK37's posts gave ME HOPE-- his positivity and updates on the latest treatments/trials were just outstanding. Though we have never met in person, he is indeed dear to me and he will be sorely missed. May God rest his beautiful soul...
DM 57 yrs old dx 6/8/15 T:4a N:1b M:1
KRAS G12D and TP53 C242fs mutations
Poorly Differentiated, Prominent Signet Ring Component(~50%)
Microsatellite Stable, 3 of (13)lymph nodes positive
15 Liver mets, largest 3.2 cm
Prim. Resection, Right Hemicolectomy 6/21/15
Start Chemo 7/20/15
2 rounds FOLFOX, 1 round FOLFOX +Avastin
CT 8/28/15, met growth, largest 4.5cm
4 rounds FOLFOX+Avastin
CT 11/06/15 mets stable, lungs clear
Begin FOLFIRI+Avastin 11/17/15, Stop chemo 1/26/16
Entered Paradise 3/11/2016

DebZ
Posts: 83
Joined: Fri Nov 14, 2014 9:01 pm
Facebook Username: Bulc

Re: Tom marsilje

Postby DebZ » Thu Nov 16, 2017 10:12 pm

I'm just heartbroken over hearing this. It's been an incredibly bad year as we lose yet another beautiful soul. Rest In Peace, Tom, you were an inspiration to us all.
48 @ diagnosis Sept 2014
MSS; Kras mutant G12D
Oct 2014: right hemicolectomy
Dec 2014-May 2015: Folfox
June 2015: clean scans
Sept 2015: scans reveal ovarian mass and liver met; Folfiri
Jan 2016: liver wedge resection and hysterectomy
April 2016: multiple lung mets; Folfiri+Avastin
June 2017: lung mets growing; switch to Folfox+Avastin
Jan-April 2018: dropped oxali; CEA rising
May 2018: back on Folfox+Avastin, add pulse steroid treatment to get platelet count up (continuously in 50s)

User avatar
Sleen
Posts: 318
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: Tom marsilje

Postby Sleen » Thu Nov 16, 2017 10:47 pm

Tom and I never let a little thing like being three time zones apart get in the way of sharing our latest BIG NEWS. He was always there.

No matter how many times the rug was pulled out from under him, he always got up, brushed himself off, and made himself ready for the next challenge. He wasted no time on thoughts of "why me?" or anger or bitterness. He remained hopeful until the very last days of his life.

I am changed for the better for having known him, and so proud to have been one of his many friends.

RIP dear Tom.

Celine
my blog: Cancer Riot

NED since April 2016!
April 2016: lower left lung lobectomy. NED
8 mo. f/u: 1 of 7 tumors progressed.
6 mo. f/u PR confirmed (Jan 2016)
Jul 2015: NIH TIL trial NCT01174121 NCI/NIH Surgery Branch FAQ
Dec 2014 confirmed stage IV w/bilateral lung mets
FOLFOX + Radiation (bladder)
KRAS G12D :: MSS
dx Sep 2013 @47yo: IIIc T4b N2b MX [bladder invasion, 17/21 lymph nodes]

Married 33 yrs. kids: 27, 24, 20, 15, 13
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

risto
Posts: 54
Joined: Wed Jan 06, 2016 2:28 am
Location: USA

Re: Tom marsilje

Postby risto » Thu Nov 16, 2017 11:27 pm

So sad... he was such an inspiration to many of us. i was really hoping he would continue to show us the way. :cry:
DW Dx 7/15, 41 yo, st IV, 3+ liver mets: 11.3 cm, 7cm, 3cm. MSS.
KRAS, APC, SMAD4, TP53 mut.
7/15-10/15: FOLFOX+bev. x8
11/15-12/15: SIRT (Y90)
1/16: Toxic Hepatitis, chemo break
4/16: Liver resec. fail
5/16-7/16: FOLFIRI x6
8/16: Liver resec.
8/16-11/16: FOLFIRI x6
2/17: IMRT/Xeloda x25
4/17: LAR
6/17: CT: Progression. Peri, Lung, Liver mets. FOLFIRI x6
9/17: FOLFIRI+Bev x5.
11/17: CT: Stable. 5FU+bev. maintenance x5
1/18-2/18: Surgery for SBO
5/18: ascites, acute liver injury


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