STAT News: A cancer researcher races to find a [MSS-CRC] cure — for his own incurable cancer

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DK37
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Location: San Diego

STAT News: A cancer researcher races to find a [MSS-CRC] cure — for his own incurable cancer

Postby DK37 » Mon Sep 26, 2016 7:25 am

If you ever wanted to know about my quest to cure both my own MSS CRC & efforts to lead the way for fellow colorectal cancer patients as well - STAT News (a fantastic healthcare & research news site) has published an incredibly well-written feature story on what is now in motion in San Diego immunotherapy research labs - for my own cancer currently and then for as many MSS-CRC patients as possible.

Things are starting to get this mad scientist pretty excited :) Stay tuned... the future is now. https://www.statnews.com/2016/09/26/col ... -marsilje/

Cheers,
-DK
6/4/2012 Dx Stage 3C CRC @ 40 yo. MSS, KRAS-WT, BRAF-WT, p53-mut
7/12 FOLFOX/FOLFIRI
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

Wonderfullymade
Posts: 124
Joined: Tue Jan 12, 2016 4:33 pm

Re: STAT News: A cancer researcher races to find a [MSS-CRC] cure — for his own incurable cancer

Postby Wonderfullymade » Mon Sep 26, 2016 7:53 am

You rock! God be with you DK!
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High Lynch?
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1
9/2017 NED CEA 1.1
10/2018 NED CEA 1.1

MissMolly
Posts: 560
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: STAT News: A cancer researcher races to find a [MSS-CRC] cure — for his own incurable cancer

Postby MissMolly » Mon Sep 26, 2016 9:40 am

DK:
Wow. Amazing article.

You clearly are being guided by a Higher Power/God, in your quest. Adding your innate and keen intelligence and tireless work ethic.

You deserve only the best of good possibilities and health restored in your ground-breading work with the vaccine.
Nameste,
- 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.

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ktwmn
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Re: STAT News: A cancer researcher races to find a [MSS-CRC] cure — for his own incurable cancer

Postby ktwmn » Mon Sep 26, 2016 10:39 am

Have you begun the vaccine?
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

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Marejenny
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Joined: Sat Aug 20, 2016 11:30 am

Re: STAT News: A cancer researcher races to find a [MSS-CRC] cure — for his own incurable cancer

Postby Marejenny » Mon Sep 26, 2016 11:29 am

DK:
I want to thank you from the bottom of my heart for your hard work and dedication in pursuing a cure for us. I pray that you keep your strength up and your chemo brain cooperates so that you may benefit from your endeavors. You are a great person and I am proud to know you.
62f, Blessed with a wonderful husband and 2 sons
Diagnosed 6/2016, Adenocarcinoma, Colectoral primary, chemo lifer
Stage 4b, liver mass 7.0 x 4.8 cm and additional lesions, multiple lung nodes
CEA 40.9
7/12 began Folfox, Neulasta, Avastan
CT 9/12 tumor shrunk 4.4 by 3.3
CEA 9.6
Continuing Folfox, CT scheduled 12/12.
MSS, neg lynch
Put Oxiliplatin and Neulasta on hold.
CT 12/12 Hepatic dome mass shrinks to 2.9 x 2.5, other lesions shrink, no new.
CEA 3.3

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mypinkheaven
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Re: STAT News: A cancer researcher races to find a [MSS-CRC] cure — for his own incurable cancer

Postby mypinkheaven » Mon Sep 26, 2016 11:42 am

Excellent article! Thank God for the smart people working on this. 8)
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

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juliej
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Re: STAT News: A cancer researcher races to find a [MSS-CRC] cure — for his own incurable cancer

Postby juliej » Mon Sep 26, 2016 12:34 pm

Great article! I love the idea of a vaccine that is truly personalized and loaded with patient-specific neoantigens.

Current immunotherapies, as good as they are, still have the potential to be toxic since they function in that narrow gap between tumor immunity and autoimmunity. The use of neoantigens offers the possibility of a safer and more specific therapy. Perhaps combining a neoantigen vaccine with a checkpoint inhibitor might even improve its efficacy?

The immune cells in his blood lashed out at about a dozen of the peptides.

Yes! GO, Tom's immune cells, GO! :D
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 7/13/2018, CEA<1

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Nik Colon
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Re: STAT News: A cancer researcher races to find a [MSS-CRC] cure — for his own incurable cancer

Postby Nik Colon » Mon Sep 26, 2016 2:22 pm

Thanks again :)
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

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DK37
Posts: 510
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Location: San Diego

Re: STAT News: A cancer researcher races to find a [MSS-CRC] cure — for his own incurable cancer

Postby DK37 » Tue Sep 27, 2016 5:43 am

ktwmn wrote:Have you begun the vaccine?


Hi Ktwmn,

I have not started the vaccine yet. I hope to enter therapeutic phase within a matter a few months. I'll update with posts as milestones are achieved in the envisioned treatment plan but that is the timescale we're looking at currently. Approaching clinical phase... but not quite there yet.

Cheers,
DK
6/4/2012 Dx Stage 3C CRC @ 40 yo. MSS, KRAS-WT, BRAF-WT, p53-mut
7/12 FOLFOX/FOLFIRI
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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DK37
Posts: 510
Joined: Tue Sep 17, 2013 8:31 am
Location: San Diego

Re: STAT News: A cancer researcher races to find a [MSS-CRC] cure — for his own incurable cancer

Postby DK37 » Tue Sep 27, 2016 5:48 am

juliej wrote: Perhaps combining a neoantigen vaccine with a checkpoint inhibitor might even improve its efficacy?



That is certainly what we and others in the field are hypothesizing right now Julie. There were reports (unconfirmed but from a good source) that there have been some melanoma patients that had partial responses from vaccine alone (which I think i amazingly good news from both a technology and essentially lack of side effects level!). Our current guess is that for MSS-CRC, seeing activity from vaccine alone is a longshot (perhaps stable disease is possible?) so right now we are thinking through ways to add checkpoint inhibitors and/or other co-therapies to the vaccine therapy. A topic very much in discussion right now.

-DK
6/4/2012 Dx Stage 3C CRC @ 40 yo. MSS, KRAS-WT, BRAF-WT, p53-mut
7/12 FOLFOX/FOLFIRI
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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DK37
Posts: 510
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Location: San Diego

Re: STAT News: A cancer researcher races to find a [MSS-CRC] cure — for his own incurable cancer

Postby DK37 » Tue Sep 27, 2016 5:53 am

As clinical phase takes off (knock on wood) - I think following in Sleen's Colon Talk footsteps (huge knock on wood I follow in her footsteps in MANY ways :D ) - I'll add my updates to this thread, rather than separate new ones, so that yesterday's newsstory background/basic descriptions of the project is the first post in the topic and the overall story is not spread across multiple topics.

Another basic background for the project, this blog post from Feb 2016: https://adventuresinlivingterminallyopt ... ear-vol-2/

If I forget to do this (damn chemo brain - :D) feel free to remind me!

-DK
6/4/2012 Dx Stage 3C CRC @ 40 yo. MSS, KRAS-WT, BRAF-WT, p53-mut
7/12 FOLFOX/FOLFIRI
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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juliej
Posts: 2859
Joined: Thu Aug 05, 2010 12:59 pm

Re: STAT News: A cancer researcher races to find a [MSS-CRC] cure — for his own incurable cancer

Postby juliej » Tue Sep 27, 2016 1:26 pm

DK37 wrote:As clinical phase takes off (knock on wood) - I think following in Sleen's Colon Talk footsteps (huge knock on wood I follow in her footsteps in MANY ways :D ) - I'll add my updates to this thread, rather than separate new ones, so that yesterday's newsstory background/basic descriptions of the project is the first post in the topic and the overall story is not spread across multiple topics.

Another basic background for the project, this blog post from Feb 2016: https://adventuresinlivingterminallyopt ... ear-vol-2/

If I forget to do this (damn chemo brain - :D) feel free to remind me!

Looking forward to your updates. You have a powerful team - Human Longevity (the name itself is an affirmation!) and UCSD-Moores Cancer Center - lots of big brains working on your case! You are going into new territory here and I am so thrilled and happy for you!!!
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 7/13/2018, CEA<1

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ktwmn
Posts: 349
Joined: Tue Aug 02, 2011 9:41 am

Re: STAT News: A cancer researcher races to find a [MSS-CRC] cure — for his own incurable cancer

Postby ktwmn » Tue Sep 27, 2016 2:23 pm

This is great news. I look forward to reading your updates, Tom. This will be a great educational resource for members!--JM
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin


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