DK37 Personal/Trial Update - In Case of Emergency Break Glass

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DK37
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Location: San Diego

DK37 Personal/Trial Update - In Case of Emergency Break Glass

Postby DK37 » Thu Feb 23, 2017 4:03 pm

Hi Everyone-

My first time logged onto CT for a while - things have been kind of crazy... Physically I am dealing with some increase medical issues and I have been scrambling to readjust plans - the liver issue is serious...

Full story at the link at the bottom of this post, excerpts from a blog I wrote a few days ago below:

Well… a blog post I certainly don’t want to write and I did not plan on writing… My oncolytic virus clinical trial plans were postponed at the last second.

What? How?? Why???

My disease has decided to flip a genetic switch. Tumors are allowed to do that, they are genetically unstable after all… A switch has been flipped to a “more aggressive phenotype“. What does that mean in English? It means that when I saw my CT-scan of my previously (for almost 5 years) clean liver – my jaw dropped. And not in a good way. My liver was covered with spots – too many too count. Some of them quite large.

I love the concept of the my planned oncolytic immunotherapy trial! I still do. But in this instance it has one major flaw. It does not act fast. Best case scenario, it takes a while to ramp up the immune system. Looking at my liver, in a split second, I made my decision. Those tumors needs to shrink now, as soon as possible, as fast as possible. There is only one type of treatment that does that.

Chemo. ASAP. Today.

This was definitely a big shock. I hope to try the oncolytic virus trial in the future but we shall see if that is offered to me… But this is why I have developed layers upon layers upon layers of plans over the past 2 years. Cancer is wily foe. It surprises you when you least expect it. To combat that kind of foe, you need to have your own surprises lined up. And this is mine. My goal has not changed, just some facts on the ground. My goal is to beat my cancer, using science and my brain as my weapons, by any means necessary. Today was I disappointed? Yes. A bit scared? Yes. Deterred? Never. This is why you should always have plenty of planes on your taxiway – you never know when one might be needed.

I mean this more today than perhaps ever before. To Life!

https://adventuresinlivingterminallyopt ... eak-glass/

-DK37
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

Tim UK
Posts: 76
Joined: Fri Jun 12, 2015 1:05 am

Re: DK37 Personal/Trial Update - In Case of Emergency Break Glass

Postby Tim UK » Thu Feb 23, 2017 5:53 pm

Have you discussed stereotactic radiotherapy (cyber knife) with your team for the liver spots? I just had a long-dormant liver met come back to life whilst on my otherwise positive immunotherapy trial. The docs prefer this technology over RF ablation by virtue of its accuracy, and the possibility of a synergistic abscopal effect - which can reduce distant mets. May be worth a look for you.

All the best,
Tim
https://youtu.be/qoQbY4A5RNA
05/15 L hemi-colectomy
05/15 Dx st 3 T4N2M0 @43
kids: now 13, 10
BRAFm mucinous - KRASw
06/15 liver mets
06/15 CEA 9, CA19-9 400+
06/15 - 09/15 6 x FOLFOXIRI+Avastin
09/15 markers 4/50
10/15 drain-site met
11/15 CRS+HIPEC
1-8/16 BRAF triplet (dabrafenib, panitumumab, trametinib)
CEA;CA19-9: range 16;650 to 1;36 back to 4;135
8/16 progression
10/16-6/18 : NCT02650713
7/18-9/18 : anti-GITR; ERK inhib
10/18-4/19: folfoxiri+avastin
7/19-9/19 enco+cetux+Bini
10-19 starting regonivo

karaj
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Joined: Mon Aug 18, 2014 10:17 pm
Location: Boston
Contact:

Re: DK37 Personal/Trial Update - In Case of Emergency Break Glass

Postby karaj » Thu Feb 23, 2017 6:01 pm

Wow. So sorry to hear about this turn. Thank you for, once again, turning your treatment into a learning experience for us. Hopeful to hear good news soon for you soon.
36 y/o female, dx at 32
8/14 dx Stage IIIC, 10/30 lymph nodes
8/14-9/14: sigmoidoscopy, fertility preservation, port-a-cath
9/14 - 3/15: FOLFOX (allergic to oxaliplatin, underwent desensitization)
4/15: NED
1/16: dx Stage IV, recurrence in three lymph nodes behind abdomen
2/16: FOLFIRI
8/16: NED
8/17: NED, currently under no treatment, scans every 3 months
http://www.karaincancerland.com

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: DK37 Personal/Trial Update - In Case of Emergency Break Glass

Postby Maia » Thu Feb 23, 2017 6:05 pm

To life, Tom!
Let's keep walking.

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

Re: DK37 Personal/Trial Update - In Case of Emergency Break Glass

Postby jortego128 » Thu Feb 23, 2017 8:53 pm

Damnit...Not something I expected to hear from your newest update Tom. At least you were clear and decisive on what you need to do. I hope that chemo gives you the response/shrinkage needed to begin the oncolytic virus protocol ASAP. I will continue to pray for you. To Life!!!
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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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: DK37 Personal/Trial Update - In Case of Emergency Break Glass

Postby LPL » Thu Feb 23, 2017 9:10 pm

DK37,
I hope you will have a Big Success with your plan !
Thank You very much for All your reseach and for sharing info.
Kind Regards /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

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CRguy
Posts: 10246
Joined: Sun Feb 10, 2008 6:00 pm

Re: DK37 Personal/Trial Update - In Case of Emergency Break Glass

Postby CRguy » Thu Feb 23, 2017 9:23 pm

To LIFE ! indeed my friend
... sending you some virtual "refueling" trucks to keep your planes gassed and taxiing ... always READY for takeoff
WORD !

Just an outta the box thought here though :
with all the testing and "science" you have thrown into the mix,
would you have the genome studies needed to check against the POG project hotlist of "outta the box" receptor / pathway response matrices for your personal tumors ?

I am always thinking about this initiative and there is a show on tonight I am recording here.... which is what made me think of this.
(( ... and it is coming from my own BCCA CRC alma mater :shock: ))

Love your attitude BTW. My old medicine prof's words ALWAYS ring out in my mind :
"You will miss more for not looking... than for not knowing."

YOU are doing that "looking" in spades .. always on the Journey
and we be with you ...
SO just wanting to send you another plane to back up your immunotherapy plane In Case of Emergency Break Glass on the taxiway

Mega Cheers and Harmony coming your way
Thanks so much for all you share with us here, and all around the Web-oshpere

CRguy
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

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

Re: DK37 Personal/Trial Update - In Case of Emergency Break Glass

Postby Steph20021 » Thu Feb 23, 2017 9:27 pm

This is unexpected but thankfully you are smart and prepared and I have absolute faith in you. You teach me so much. Ill be sending you all the
good vibes! To life!
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

testing765
Posts: 316
Joined: Tue Aug 19, 2014 9:41 am

Re: DK37 Personal/Trial Update - In Case of Emergency Break Glass

Postby testing765 » Fri Feb 24, 2017 11:34 am

My prayers are with you Tom. I wish the cancer had not progressed but I am glad that you have well thought out plan of action to deal with that.
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

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DK37
Posts: 510
Joined: Tue Sep 17, 2013 8:31 am
Location: San Diego

Re: DK37 Personal/Trial Update - In Case of Emergency Break Glass

Postby DK37 » Sun Feb 26, 2017 9:35 am

Tim UK wrote:Have you discussed stereotactic radiotherapy (cyber knife) with your team for the liver spots? I just had a long-dormant liver met come back to life whilst on my otherwise positive immunotherapy trial. The docs prefer this technology over RF ablation by virtue of its accuracy, and the possibility of a synergistic abscopal effect - which can reduce distant mets. May be worth a look for you.

All the best,
Tim


Hi Tim,

SBRT is on the possibility list - if we do a liver specific treatment, we are leaning a bit more towards HAI pump right now but everything is still under discussion and assessment. While those plans are being worked out, I am doing the systemic chemo because as far as we know, these mets may be quite sensitive and respond. We'll find out soon.

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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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: DK37 Personal/Trial Update - In Case of Emergency Break Glass

Postby BrownBagger » Sun Feb 26, 2017 9:59 am

Good luck with the systemic chemo, DK. The HAI pump, if you can get on it, has proven to be pretty effective.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.


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