DK37: An Ironic Cancer Life

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DK37
Posts: 501
Joined: Tue Sep 17, 2013 8:31 am
Location: San Diego

DK37: An Ironic Cancer Life

Postby DK37 » Mon May 08, 2017 8:05 am

Hi Everyone,

Although I know I have been quiet on Colon Talk recently between serious medical issues & thus needing to focus my advocacy a bit due to logistical constraints... I know there are many people here - my first patient advocacy home!! - that may be curious to read the latest twists & turns in my Cancer Journey...

So I thought I would post a link to a very personal new blog entry... where I not only look forward with a medical plans update but also look back on how a very introverted oncology drug discovery scientist transformed into an patient-scientist-activist (first named "DK37"!!) eventually helping at least tens of thousands of CRC & cancer patients/caregivers worldwide. A completely ironic life path that has surprisingly truly been "A Wonderful Life" since my diagnosis - not in spite of my early-onset CRC but ironically because of it...

An Ironic Cancer Life: https://adventuresinlivingterminallyopt ... ncer-life/

To Life!
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://colorectalmsstrials.org/
2016 Colondar 2.0 Model
DK37 Science Posts List

sdino
Posts: 20
Joined: Tue Mar 28, 2017 5:32 pm

Re: DK37: An Ironic Cancer Life

Postby sdino » Mon May 08, 2017 8:41 am

Yes ! To Life ! Thank you DK37.
Caregiver for Wife 52 yrs old
DX: 11/16-CC sigmoid colon 3 cm, Lung Bio-Adenocarcinoma Stg IV
Mets: 1.2 cm now 7 mm lung w/14 other nodules less than 6 mm.
3 lymph nodes
MSS, KRAS-mut G12D; TP53;
Chemo: Complete 12 rounds Folfox/Avastin + Oxi 11/16 to 5/17
CT Scans: 11/16; 1/17 lung mets/colon shrinkage; 3/17 lung mets no change, shrinkage lymph/colon tumor, 5/17 colon & lung met shrinkage
CEA: 16 - 11/16; 4 – 12/16; 0.7 – 1/17; 0.5 – 2/17; 0.6 - 5/17

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CRguy
Posts: 8979
Joined: Sun Feb 10, 2008 6:00 pm

Re: DK37: An Ironic Cancer Life

Postby CRguy » Mon May 08, 2017 12:34 pm

Yet another epic blog my friend

Yes you have made, are making and will make ... a difference to all on the Journey
I salute you ! ... and now figured out where your name comes from :mrgreen:

MEGA CHEERS coming your way
CRguy on the Journey
Caregiver twice
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far
Image

Lee
Posts: 4719
Joined: Sun Apr 16, 2006 4:09 pm

Re: DK37: An Ironic Cancer Life

Postby Lee » Mon May 08, 2017 4:56 pm

Enjoy your blogs, thank you.

Lee
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!

jortego128
Posts: 254
Joined: Sat Aug 15, 2015 7:47 am

Re: DK37: An Ironic Cancer Life

Postby jortego128 » Tue May 09, 2017 6:06 am

I will be praying that the SIRT goes well Tom. When I finally discovered that SIRT was available so close to home I brought my mother, but is was too late, she was too weak to undergo the procedure. :(

In hindsight, SIRT at diagnosis would have been the thing to do, but NOT ONE of her doctors even mentioned the existence of it. I only found it due to this forum, and Google.
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

testing765
Posts: 289
Joined: Tue Aug 19, 2014 9:41 am

Re: DK37: An Ironic Cancer Life

Postby testing765 » Wed May 10, 2017 8:50 am

Hi DK37. I appreciate so much the help and hope that you give me and others. I am praying that the SIRT therapy knocks out the cancer beast.
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- colonoscopy- 3 polyps removed
10/15- CT scan, NED
10/16- CT scan, NED, CEA 1.6
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

andy21
Posts: 375
Joined: Tue Jun 26, 2012 4:07 pm
Location: N California

Re: DK37: An Ironic Cancer Life

Postby andy21 » Thu May 11, 2017 5:40 pm

Very well written blog! Good luck with SIRT. It can and will do wonders!!
Hoping San Diego has best to offer in terms of treatment.
Have u thought of giving MSKCC a try?
Caregiver: To 67 Yr father
diag. Stage IV, 5/12, liver mets
6 cycles Xelox/Avastin, Start 06/12
Stage 1 of Two Stage Resection Surgery in Dec, 12. 2nd line fails.
T Cell Trial May-Jul, 2013
Becomes a Heavenly Angel in August, 2013

User avatar
DK37
Posts: 501
Joined: Tue Sep 17, 2013 8:31 am
Location: San Diego

Re: DK37: An Ironic Cancer Life

Postby DK37 » Wed May 17, 2017 8:52 am

andy21 wrote:Very well written blog! Good luck with SIRT. It can and will do wonders!!
Hoping San Diego has best to offer in terms of treatment.
Have u thought of giving MSKCC a try?


Hi andy21,

I have been to MSKCC for a second opinion consult. I decided to stay at UCSD because they have plenty of experience and resources for SIRT and due to my tumor burden, it is actually very hard for me to travel now...

Take care,
-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://colorectalmsstrials.org/
2016 Colondar 2.0 Model
DK37 Science Posts List

andy21
Posts: 375
Joined: Tue Jun 26, 2012 4:07 pm
Location: N California

Re: DK37: An Ironic Cancer Life

Postby andy21 » Tue May 23, 2017 4:22 pm

Try to use Corporate Angel network for flights, sometimes they work out well.
Caregiver: To 67 Yr father
diag. Stage IV, 5/12, liver mets
6 cycles Xelox/Avastin, Start 06/12
Stage 1 of Two Stage Resection Surgery in Dec, 12. 2nd line fails.
T Cell Trial May-Jul, 2013
Becomes a Heavenly Angel in August, 2013


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