Update on DK (Dr. Tom Marsilje)...

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Update on DK (Dr. Tom Marsilje)...

Postby jortego128 » Tue Oct 24, 2017 2:02 pm

DK rarely posts here anymore, but still updates his FB and blog. He has been such a help and inspiration to so many here , I just wanted to "forward" info from his blog to here so others here concerned about him (like me) , can see how he's doing. It appears he has some brain mets now, but is optimistic about the use of SBRT to zap them. Please keep DK in your thoughts and prayers...

https://adventuresinlivingterminallyopt ... rain-mets/
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

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Re: Update on DK (Dr. Tom Marsilje)...

Postby Robino1 » Tue Oct 24, 2017 4:46 pm

Following him on Facebook now. Such a fighter! Prayers going his way.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

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Re: Update on DK (Dr. Tom Marsilje)...

Postby MissMolly » Tue Oct 24, 2017 6:50 pm

I have been following Tom’s posts on Facebook as I am drawn by his fevor to make a demonstrative difference in the science of cancer (the cancer researcher in him), personalizing cancer care, and facilitating access to clinical trials.

I remain in awe of Tom. I am in awe of all of who he is as a person - his razor-sharp intellect, his tenacity of spirit and goodwill to those around him, and in his tireless and selfless efforts to aide others.

I believe in the collective power of prayer and positive energy and its healing potential and comfort to another’s soul. I hope hat Tom can feel the collective prayer and love from the many who are following his writings and that this brings him a measure of Inner comfort.

My brother is a long-term survivor of a malignant stage IV glioblastoma multiforma. It is felt that my brother’s immune system harnessed an unprecedented onslaught on the malignancy - the same or similar bio-disruptive pathways that are emerging with immunotherapy research. My brother’s individual immune responce was ahead of the current science. My brother’s story illuminates the value of hope, even when the odds seem slim.

Sending blessings and positive karma to Tom and his family,
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.

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Re: Update on DK (Dr. Tom Marsilje)...

Postby Maia » Tue Oct 24, 2017 9:19 pm

What a nice words, Miss Molly. You expressed perfectly a good part of my own feelings and thoughts.

Tom is hanging in there. Hopefully, the brain mets can be addressed and he can continue with the systemic immunotherapy/ chemo concoction he designed for himself --plus, other great treatments ideas he has lined up.
He's so loved for so many. I'm convinced that Love can reach others, despite distance, yes. So no doubt he has this awesome cloud/armor of Love surrounding him, lifting him : )

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Re: Update on DK (Dr. Tom Marsilje)...

Postby benben » Tue Oct 24, 2017 10:05 pm

Tom is a true Soldier. I applaud his work and his fighting will.
May radiation treatments be kind and effective on his brain mets.
I salute you Tom, and will include you personally in my Metta Meditations.

Wishing you full health and contentment!
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
6/19 CT - NED (2 years!)

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Re: Update on DK (Dr. Tom Marsilje)...

Postby stu » Wed Oct 25, 2017 5:59 am

Wishing the very best outcome from treatment . In our hearts and prayers .
Last edited by stu on Wed Oct 25, 2017 10:12 am, edited 1 time in total.
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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Re: Update on DK (Dr. Tom Marsilje)...

Postby plastikos » Wed Oct 25, 2017 9:45 am

I have been following Tom for some time now. He is an inspiration to us all. Praying for him.
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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Re: Update on DK (Dr. Tom Marsilje)...

Postby fumaros » Wed Oct 25, 2017 10:24 am

His strength is amazing. He is in my prayers
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

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Re: Update on DK (Dr. Tom Marsilje)...

Postby Shana » Wed Oct 25, 2017 3:05 pm

I first heard about Tom from an article sent to me shortly after my diagnosis. I have been following him on his blog and more recently on Facebook.

I can't say it any better than Miss Molly did. Tom is an amazing human being. I hope and wish him success with his current treatment. He is such an inspiration to all of us.

Sending him positivity and love
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

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Re: Update on DK (Dr. Tom Marsilje)...

Postby DarknessEmbraced » Wed Oct 25, 2017 3:40 pm

I hope his brain met treatments go well!*hugs*
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! :)

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Re: Update on DK (Dr. Tom Marsilje)...

Postby Lee » Wed Oct 25, 2017 6:22 pm


You are a true inspiration, I hope the SBRT procedure is able to send those nasty brain mets into the next universe.

Gentle hugs and lots of prayers,

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 - 10 years and counting!

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Re: Update on DK (Dr. Tom Marsilje)...

Postby CRguy » Wed Oct 25, 2017 8:20 pm

Have not weighed in on this yet ... BUTT ...
a number of folks have been back and forth with Tom during this recent episode
( Maia and I for sure ... others I AM sure !...)

Having been here for a shitload of years myself, I have learned that sometimes when folks do not post themselves
it may be due to a number of reasons.
No Longer wanting to be here = NOT Tom
No Longer HERE = NOT TOM !!!!!!
Not sure what they want to say or when or why ... or how ... maybe = Tom right now
as he embarks on yet another new Journey

If you have read his own blog posts and checked in with his FBook ...
you KNOW Tom is just in holding pattern while he works and tweaks his latest version of
" No. 1 ROCK star CRC patient and world class MEGA advocate and real time researcher !!!!! "

WORD people ... WORD !

In his very specific Journey, Tom IS walking the walk.
He has some challenges and is working to move ahead in any and EVERY WAY !

Having walked his walk, I know our dear friend will absolutely TALK his talk ..
HERE ... on his blog ... on FBook

UNTIL he does, I find our support for him a very, VERY significant measure of
what he means to US
by extension, knowing Tom ...
What we mean to HIM

DK37, you ARE US

WE ARE not only with you

ALWAYS in Harmony

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

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Re: Update on DK (Dr. Tom Marsilje)...

Postby mariane » Wed Oct 25, 2017 10:48 pm

Tom, if you find time to read us sometimes, I just wanted to let you know that I think about you and have been praying for you almost every day during the last 2 years. Absolutely every day since last winter. You are changing the cancer world.

You mean a lot to us. Stay strong, Brother!
mom of now 10 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

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Re: Update on DK (Dr. Tom Marsilje)...

Postby DK37 » Fri Oct 27, 2017 6:34 am

THANK YOU everyone for the the kind words!! Although I do not have the bandwidth to read or respond to posts as much as I did last year as I focus my online advocacy on FB and my personal blog, --- as my first CRC message board, you, remain very close to my heart & mind!!

I wish everyone here the very best. Both CRGuy & Maia know how to get ahold of me in case of medical emergency which I have given them them OK to use --- unless it impedes my own medical treatment!

Sincerely all the best!

6/4/2012 Dx Stage 3C CRC @ 40 yo. MSS, KRAS-WT, BRAF-WT, p53-mut
2/13 NED!
8/13 Enlarged lymphs - Stable
10/14 Stage IV. Lung & Lymph mets. 5-FU+bev
3/15 Cetuximab
11/15 FOLFIRI + bev
11/16 Signs of FOLFIRI resistance (Lymph mets)
1/17 Palliative radiation for resistant mets
2/17 FOLFIRI + bev + Maraviroc (off-label)
3/17 FOLFIRI + Erbitux + Maraviroc (off-label)
MSS-CRC Clinical Trial Finder: http://trialfinder.fightcrc.org/
2016 Colondar 2.0 Model
DK37 Science Posts List

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Re: Update on DK (Dr. Tom Marsilje)...

Postby Maia » Fri Oct 27, 2017 6:42 am


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