A Rare Personal Post from DK37 - Treatment Plan Update

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

A Rare Personal Post from DK37 - Treatment Plan Update

Postby DK37 » Wed Oct 28, 2015 8:15 am

Hi Everyone,

I usually stick to science here on Colon Talk - but I am a Stage IV patient too in the background...
Since I know many people here on the board, I wanted to update you on my treatment plan decision made yesterday.

Even though standard of care is still available to me, I decided between my slow growth rate and my fantastic overall health (I ran 10k on Sunday without losing my breath, multiple lung tumors be damned!) that I would try for an immunotherapy trial. My melanoma precludes me from almost all company-sponsored trials but the NIH is a bit more flexible. So I had tried to get into the "Sleen NIH TIL" trial - but they require tumors at least 1.5 cm large in an easily surgically accessible position - and none of my tumors met that criteria... so the trial was a no-go for me (at least for now).

So I'll be starting up irinotecan (Update: FOLFIRI) soon. I've had it before (although it has been awhile) - so I know the side effects... But I honestly do think there is a great chance it will slap my tumors up side the head and shrink them down - giving MSS-CRC immunotherapy trials more time to advance - and my melanoma trial exclusion also more time to go away!

You know me, I'm a writer at heart - so here is my take on the science & feelings of the decision on my blog, for anyone interested:
http://adventuresinlivingterminallyoptimistic.com/2015/10/27/its-a-marathon-not-a-sprint/

I was proud to give a shout-out to the CT hero Belle! Without naming her, Sleen as well!

Cheers,
-DK
Last edited by DK37 on Fri Nov 13, 2015 8:39 am, edited 1 time in total.
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

Nik Colon

Re: A Rare Personal Post from DK37 - Treatment Plan Update

Postby Nik Colon » Wed Oct 28, 2015 8:17 am

Sorry again that you couldn't get into the trial :( and best wishes with iri.

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OneFoot
Posts: 28
Joined: Fri Sep 11, 2015 7:29 am

Re: A Rare Personal Post from DK37 - Treatment Plan Update

Postby OneFoot » Wed Oct 28, 2015 8:18 am

Good luck from a newbie, and thank you for the link to your blog!
Nicci, F, dx age 46
One Foot in Front of the Other
IIIB RectoSigmoid cancer, 09/2015
XELOX 11/2015
T3N1bM0? 3/25ln, kidney status suspicious
perineural and lymphatic invasions

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: A Rare Personal Post from DK37 - Treatment Plan Update

Postby cathy123 » Wed Oct 28, 2015 8:32 am

Sorry the trial didn't work out, but hope the chemo keeps things at bay. I am amazed by your wonderful attitude - hope the right trial/treatment for you comes around soon. And those little girls if yours are adorable.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: A Rare Personal Post from DK37 - Treatment Plan Update

Postby JudeD59 » Wed Oct 28, 2015 10:02 am

As the mom of four grownup daughters, that picture of your two angels made me want to scoop them up and cuddle them. They are adorable. I wish I had kept a journal of every funny thing my daughters did and said when they were that age.

I'm sorry you weren't able to get into the trial as you had hoped, but will be praying for you that your side effects from the I run to the can are minor and a trial that will work for you is available soon.

Thank you so much for the mountain of research and information you provide for all of us. And thank you for sharing your blog with us.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

dxycn
Posts: 9
Joined: Thu Oct 09, 2014 10:07 am

Re: A Rare Personal Post from DK37 - Treatment Plan Update

Postby dxycn » Wed Oct 28, 2015 10:17 am

Good luck , and thank you for your research and information!

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Crystald
Posts: 142
Joined: Thu Feb 26, 2015 1:50 pm

Re: A Rare Personal Post from DK37 - Treatment Plan Update

Postby Crystald » Wed Oct 28, 2015 11:10 am

Thanks for the update, I was concerned when you "went dark" about your treatment after posting http://adventuresinlivingterminallyoptimistic.com/2015/10/05/a-tale-of-two-scans/

Thanks for all you do to provide info to the community.
Age 58
DX Jul 2014 Stage IVb CRC metastatic, unknown primary, CEA 1826
Inoperable, Chemo for life
KRASwt
MSI: not tested
29 Jul 14 Port
30 Jul - 19 Jan 2015 Folfox (12 cycles) CEA 164.5
9 Feb 15 - 20 May Flofiri failed (6 cycles) CEA 417.0
17 Jul 15 - Initiated Vectibix CEA 555.5
17 Jul 2015 - 14 Jan 2016 Vectibix
8 Feb 2016 - 11 Apr 2016 Xeloda
26 Apr 2016 Hospice

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: A Rare Personal Post from DK37 - Treatment Plan Update

Postby mariane » Wed Oct 28, 2015 11:32 am

Good Luck with Irinotecan! NIH TIL trial looks appealing for me as well. As for now MSKCC treatment seems to work for me so I stay where I am but nobody knows what future brings. Russian translation of your website was a great idea! Congratulations! Keep doing this wonderful work so needed by so many.
mom of now 14 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!

musicluvr
Posts: 91
Joined: Fri Feb 21, 2014 8:07 pm
Location: Grand Rapids MI

Re: A Rare Personal Post from DK37 - Treatment Plan Update

Postby musicluvr » Wed Oct 28, 2015 11:47 am

Just curious, since we seem to be on similar paths - why Irinotecan only? That is the drug from the devil for me, and ONC has reduced it by 40% over the last 2 treatments. He was telling me that the drug of choice for maintenance for me would be the 5FU.
58 yo female
Dx CRC 2/17/14
perm colostomy 3/14
12 rounds 5FU
Small bowel obstruction 8/14
Multiple nodules both lungs 6/15
FOLFIRI + ERBITUX started 8/11/15
Irinotecan reduced 40% , October
12/15 NED, holiday next 2 treatments, then 5FU only
Mets are back 3/16
Erbitux + Irinotecan only; dropping 5FU
CT Scan 6/16 shows mets still there
5/17 been on Erbitux only
chemo break for 3 months
5 mets now on CT Scan. Back to Erbitux
1/18 lung Mets all increased slightly
Adding Irinotecan back

jdepp
Posts: 488
Joined: Sun Sep 28, 2008 7:53 pm

Re: A Rare Personal Post from DK37 - Treatment Plan Update

Postby jdepp » Wed Oct 28, 2015 2:06 pm

Thanks for the update! For what it's worth, I think you're doing the smart move. Hopefully irinotecan won't be too bad by itself, and when the time comes to go for the home run ball, you'll have put the count more in your favor: better clinical trial data & more options.

Good luck with this drug -- I had a nice big dose of it yesterday & I'm happy to share :)
Colon dx 08 @ 41 Poorly diff. 12+ liver mets, 19/28 LN
Colon rsx /14 x Folfox-Erbitux 08-09
PVE / Liver rsx 09
Lung & LN mets 10
Folfiri, Xeloda, Avastin 10-13
Xelox, Erbitux, UFUR, TS-1, Oxi, Lonsurf 14-16
Stivarga & TIL trial 16
Brain lesion, RO688 trial 18

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

Re: A Rare Personal Post from DK37 - Treatment Plan Update

Postby DK37 » Wed Oct 28, 2015 2:18 pm

musicluvr wrote:Just curious, since we seem to be on similar paths - why Irinotecan only? That is the drug from the devil for me, and ONC has reduced it by 40% over the last 2 treatments. He was telling me that the drug of choice for maintenance for me would be the 5FU.


Good question - I have tried 5-FU + Avastin previously and my tumors ignored them like they weren't there. The exact same growth rate as taking no drugs at all... So I need something stronger to slap my tumors up side the head!

-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

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

Re: A Rare Personal Post from DK37 - Treatment Plan Update

Postby bitchslapped » Wed Oct 28, 2015 2:32 pm

Best wishes for continued "slapping" DK.
BTW, sharing is caring as my grandson tells me. :)

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

ieowi
Posts: 202
Joined: Mon Jul 27, 2015 1:27 am

Re: A Rare Personal Post from DK37 - Treatment Plan Update

Postby ieowi » Wed Oct 28, 2015 2:57 pm

Good luck I your new treatment DK37, I hope you manage to beat it.
Father 58 yo , Colon cancer IV + 4 Lymph. 7/2015
K-ras Mutant,GNAS,FBXW7,PIK3CA, MSI-low
4 cycles irinotecan+FU5
developed abdominal met + lung met...Failed
4 cycle Oxaliplatin+folfox. peri met growing...Failed
unofficial trial !!!

musicluvr
Posts: 91
Joined: Fri Feb 21, 2014 8:07 pm
Location: Grand Rapids MI

Re: A Rare Personal Post from DK37 - Treatment Plan Update

Postby musicluvr » Wed Oct 28, 2015 4:28 pm

DK37 wrote:
musicluvr wrote:Just curious, since we seem to be on similar paths - why Irinotecan only? That is the drug from the devil for me, and ONC has reduced it by 40% over the last 2 treatments. He was telling me that the drug of choice for maintenance for me would be the 5FU.


Good question - I have tried 5-FU + Avastin previously and my tumors ignored them like they weren't there. The exact same growth rate as taking no drugs at all... So I need something stronger to slap my tumors up side the head!

-DK


Interesting, and I will keep this info in my notes in case my lung mets prove stubborn in a few months.
58 yo female
Dx CRC 2/17/14
perm colostomy 3/14
12 rounds 5FU
Small bowel obstruction 8/14
Multiple nodules both lungs 6/15
FOLFIRI + ERBITUX started 8/11/15
Irinotecan reduced 40% , October
12/15 NED, holiday next 2 treatments, then 5FU only
Mets are back 3/16
Erbitux + Irinotecan only; dropping 5FU
CT Scan 6/16 shows mets still there
5/17 been on Erbitux only
chemo break for 3 months
5 mets now on CT Scan. Back to Erbitux
1/18 lung Mets all increased slightly
Adding Irinotecan back

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: A Rare Personal Post from DK37 - Treatment Plan Update

Postby lpas » Wed Oct 28, 2015 9:41 pm

Best of luck with the Iri! And thanks so much for sharing your blog. You never cease to inspire me with your awesome attitude. I think I need to borrow a dose of that positivity!
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo


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