DK's Personal Cancer Research Science Project

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

DK's Personal Cancer Research Science Project

Postby DK37 » Fri Feb 26, 2016 1:26 pm

I don't normally post too much on my personal cancer but this one is special - it is about a research science project I have going on for my own cancer.

My dream is for the project to generate the experience and info needed to set up a new trial to help both me & all of you too.
That's a big goal - but I have some big people helping and when you're currently incurable like me - sometimes you need to try for big goals...

http://adventuresinlivingterminallyopti ... ear-vol-2/

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

hmschaef
Posts: 4
Joined: Fri Feb 26, 2016 1:31 pm

Re: DK's Personal Cancer Research Science Project

Postby hmschaef » Fri Feb 26, 2016 1:59 pm

Hi DK -

This is my first post; I always read but have never posted before. Reading through your posts is so inspiring, and I had to reach out. My dad, Paul, has fought Stage IV colon cancer since August 2014. Microsattelite stable, KRAS mutated, PIK3CA mutation as well. He had surgery right after diangosis to remove the tumor in his colon, a free floating brick size tumor in his abdomen, and also had a splenectomy. He has liver mets and PC. He's progressed through Folfox (no response whatsoever), Folfuri with Avastin (had to stop Avastin due to blood clot - we got several months of stability out of Folfuri), and unforunately after one round of TAS-102, a few areas in the liver and one area of PC has grown slightly, so we have been encouraged to seek out clincial trial options. Throughout his journey, my dad's immune system has been shockingly strong. His lab levels are always "perfect" as his nurses marvel, and he still works full-time, at work at 6 a.m. every morning. Aside from some fatigue and diaherrea, he feels great. It's hard to reconcile how things can be advancing inside of him when he feels so well and looks so great - he was a smoker, drank, and ate horribly before his diagnosis. Once he got sick, he quit smoking, quit drinking, and is now eating almost completely vegan, with the exception of wild-caught salmon once a week. His body has responded fantastically, and he looks and feels healtheir than ever. He's my best friend, and the thought of him not being here to walk me down the aisle one day or see his future grandkids is devestating. We are seeking out the most aggressive clinical trials possible, and I strongly believe immunology is the answer and where the cure from cancer will come from. My dad's immune system is so strong, and I feel like if we can empower it to fight, it will. I want to give him his absolute best shot, and I think immunology is his big swing. I have found trial NCT001174121 - in reading through your journey, it sounds like this may have been a trial you pursued at one point? I know the splenectomy would hypothetically make my dad exempt from some immunology trials, but a splenectomy is not listed as an exclusion for this particular trial. His onolocigst feels he qualifies; I have reached out to the trial coordinators but am waiting to hear back. Can you offer any insights? I have also looked at NCT01697527, but it looks very aggressive, and I'm not sure his cancer expresses that protein. MGD007 sounds promising, though Phase One gives me pause. Your most recent post about the trial that may be coming down the pipe on your end sounds amazing as well. Do you have any insights you can share? Honestly, as I'm researching the options, I feel so overwhelmed. Reading your blog and your posts has been a little becaon of light today as I've spend all day looking at trials. I really appreciate any advice you could offer from your own experiences, what trials you think are very promising, and really any insights you can offer. YOU ROCK! Sending thoughts and prayers - and wanted to share my favorite quote to you and other warriors reading this. "Fate whispers to the warrior - 'You cannot withstand the storm'. The warrior whispers back 'I AM the storm.'"

THANK YOU! Looking forward to your thoughts. :D
Caregiver to my amazing dad!
8/14 - Stage IV CRC diagnosed
9/14 - Surgery to remove colon tumor and spleen; confirmed peritoneal carcinomatosis (PC) and liver mets
10/14 - Started Folfox
12/14 - Folfox failed after first CT
1/15 - Folfuri w/Avastin started
2/15 - Avastin removed after blood clot
11/15 - Folfuri failed - progression of liver mets and PC, but no new growth
2/16 - TAS-102 failed after first CT - slight progression of liver mets and PC, no new growth
Current - Exploring clinical trials

User avatar
Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: DK's Personal Cancer Research Science Project

Postby Nik Colon » Fri Feb 26, 2016 2:18 pm

Awesome! Thanks again :mrgreen:
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

Delinda2
Posts: 483
Joined: Fri Jan 16, 2015 6:28 pm
Location: Washington state

Re: DK's Personal Cancer Research Science Project

Postby Delinda2 » Fri Feb 26, 2016 3:01 pm

Hmschaef, love, love, love the quote you shared about Fate and the Warrior. "I AM the storm." instantly became my new mantra. Thank you. XXOXO, Delinda
63 yrs,wife & mom
4/14 dx colon cancer,3C,9/22 nodes
Lymphatic,venous,&perineural invasion
<1cm margin,poorly differentiated
6/14 colostomy take down
7/14 FOLFOX w/9 Nulasta shots
2/16 dx new primary of sigmoid colon
6/16 surgery-rescection on sigmoid, total hysterectomy, temp ileo, stage 4
"I AM the storm."

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

Re: DK's Personal Cancer Research Science Project

Postby DK37 » Fri Feb 26, 2016 3:07 pm

hmschaef wrote:Hi DK -

This is my first post; I always read but have never posted before. Reading through your posts is so inspiring, and I had to reach out. My dad, Paul, has fought Stage IV colon cancer since August 2014. Microsattelite stable, KRAS mutated, PIK3CA mutation as well. He had surgery right after diangosis to remove the tumor in his colon, a free floating brick size tumor in his abdomen, and also had a splenectomy. He has liver mets and PC. He's progressed through Folfox (no response whatsoever), Folfuri with Avastin (had to stop Avastin due to blood clot - we got several months of stability out of Folfuri), and unforunately after one round of TAS-102, a few areas in the liver and one area of PC has grown slightly, so we have been encouraged to seek out clincial trial options. Throughout his journey, my dad's immune system has been shockingly strong. His lab levels are always "perfect" as his nurses marvel, and he still works full-time, at work at 6 a.m. every morning. Aside from some fatigue and diaherrea, he feels great. It's hard to reconcile how things can be advancing inside of him when he feels so well and looks so great - he was a smoker, drank, and ate horribly before his diagnosis. Once he got sick, he quit smoking, quit drinking, and is now eating almost completely vegan, with the exception of wild-caught salmon once a week. His body has responded fantastically, and he looks and feels healtheir than ever. He's my best friend, and the thought of him not being here to walk me down the aisle one day or see his future grandkids is devestating. We are seeking out the most aggressive clinical trials possible, and I strongly believe immunology is the answer and where the cure from cancer will come from. My dad's immune system is so strong, and I feel like if we can empower it to fight, it will. I want to give him his absolute best shot, and I think immunology is his big swing. I have found trial NCT001174121 - in reading through your journey, it sounds like this may have been a trial you pursued at one point? I know the splenectomy would hypothetically make my dad exempt from some immunology trials, but a splenectomy is not listed as an exclusion for this particular trial. His onolocigst feels he qualifies; I have reached out to the trial coordinators but am waiting to hear back. Can you offer any insights? I have also looked at NCT01697527, but it looks very aggressive, and I'm not sure his cancer expresses that protein. MGD007 sounds promising, though Phase One gives me pause. Your most recent post about the trial that may be coming down the pipe on your end sounds amazing as well. Do you have any insights you can share? Honestly, as I'm researching the options, I feel so overwhelmed. Reading your blog and your posts has been a little becaon of light today as I've spend all day looking at trials. I really appreciate any advice you could offer from your own experiences, what trials you think are very promising, and really any insights you can offer. YOU ROCK! Sending thoughts and prayers - and wanted to share my favorite quote to you and other warriors reading this. "Fate whispers to the warrior - 'You cannot withstand the storm'. The warrior whispers back 'I AM the storm.'"

THANK YOU! Looking forward to your thoughts. :D


Hi hmschaef,

I'm not a MD so I can't give medical advice but scientifically - NCT01174121 (the NIH TIL trial) makes a lot of sense and there is at least one MSS patient with a clinical response. I did try to get onto it (my lung lesion that was big enough was not in a surgically accessible location) - but I know numerous patients trying to get on it right now. In terms of "known data" it is the only immunotherapy trial I personally know of with a confirmed MSS-CRC response (tumor regression). Hopefully more preliminary signs of success for other trials will be announced at the big AACR and ASCO oncology meetings in April & June... There are multiple trials which make scientific sense "on paper" & based upon animal experiments but many of those will unfortunately fail - you never know until you go into humans whether or not something will work... You'll see some of those listed in my signature line hyperlink.

Best of luck-
-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

lpas
Posts: 1009
Joined: Wed Nov 19, 2014 11:11 pm

Re: DK's Personal Cancer Research Science Project

Postby lpas » Fri Feb 26, 2016 3:17 pm

Holy cow, Tom. That's incredible news! Thanks so much for keeping us in the loop. Can't wait to hear how this one develops.
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 celecoxib, cimetidine & other targeted supplements
Mom to a 5 & 8yo

hmschaef
Posts: 4
Joined: Fri Feb 26, 2016 1:31 pm

Re: DK's Personal Cancer Research Science Project

Postby hmschaef » Fri Feb 26, 2016 3:53 pm

Great insight, thanks for sharing DK. So hoping that prior splenectomy is not an exclusion criteria for this trial. It is not listed and the list of detailed exclusions is LONG! Fingers crossed. Thank you again for your response. Best of luck!
Caregiver to my amazing dad!
8/14 - Stage IV CRC diagnosed
9/14 - Surgery to remove colon tumor and spleen; confirmed peritoneal carcinomatosis (PC) and liver mets
10/14 - Started Folfox
12/14 - Folfox failed after first CT
1/15 - Folfuri w/Avastin started
2/15 - Avastin removed after blood clot
11/15 - Folfuri failed - progression of liver mets and PC, but no new growth
2/16 - TAS-102 failed after first CT - slight progression of liver mets and PC, no new growth
Current - Exploring clinical trials

User avatar
Sleen
Posts: 314
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: DK's Personal Cancer Research Science Project

Postby Sleen » Mon Feb 29, 2016 9:28 pm

hmschaef wrote:So hoping that prior splenectomy is not an exclusion criteria for this trial. It is not listed and the list of detailed exclusions is LONG! Fingers crossed. Thank you again for your response. Best of luck!


A research nurse at NIH can answer this: (866) 820-4505.
Good luck!

Celine
my blog: Cancer Riot

NED since April 2016!
April 2016: lower left lung lobectomy. NED
8 mo. f/u: 1 of 7 tumors progressed.
6 mo. f/u PR confirmed (Jan 2016)
Jul 2015: NIH TIL trial NCT01174121 NCI/NIH Surgery Branch FAQ
Dec 2015 stage IV w/bilateral lung mets
FOLFOX + Radiation (bladder)
KRAS G12D :: MSS
dx Sep 2013 @47yo: IIIc T4b N2b MX [bladder invasion, 17/21 lymph nodes]

Married 28 yrs. kids: 22, 19, 15, 11, 9
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

hmschaef
Posts: 4
Joined: Fri Feb 26, 2016 1:31 pm

Re: DK's Personal Cancer Research Science Project

Postby hmschaef » Tue Mar 01, 2016 8:14 am

Hi Celine -

Thanks for reaching out! I received your message and have been reading your blog, as have my dad, sister, and entire family! Such inspiring, encouraging results - so happy this is working well for you. I received an email back from the NIH, and a splenectomy does not exclude him! We are submitting the questionnaire today once we get his lab/scan results from his oncologist - very excited to begin the process. I have so many questions about your experience after reading your blog and would love to connect directly, but I am such a new member to the Colon Club that it won't let me send a private message. Private message me if you can think of a better way for us to connect. Hope you are feeling great and have a fantastic day! THANK YOU!
Caregiver to my amazing dad!
8/14 - Stage IV CRC diagnosed
9/14 - Surgery to remove colon tumor and spleen; confirmed peritoneal carcinomatosis (PC) and liver mets
10/14 - Started Folfox
12/14 - Folfox failed after first CT
1/15 - Folfuri w/Avastin started
2/15 - Avastin removed after blood clot
11/15 - Folfuri failed - progression of liver mets and PC, but no new growth
2/16 - TAS-102 failed after first CT - slight progression of liver mets and PC, no new growth
Current - Exploring clinical trials

User avatar
Sleen
Posts: 314
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: DK's Personal Cancer Research Science Project

Postby Sleen » Tue Mar 01, 2016 2:33 pm

So glad to know that the splenectomy won't disqualify him! That is excellent news. :D
I sent a PM with contact info.

Celine
my blog: Cancer Riot

NED since April 2016!
April 2016: lower left lung lobectomy. NED
8 mo. f/u: 1 of 7 tumors progressed.
6 mo. f/u PR confirmed (Jan 2016)
Jul 2015: NIH TIL trial NCT01174121 NCI/NIH Surgery Branch FAQ
Dec 2015 stage IV w/bilateral lung mets
FOLFOX + Radiation (bladder)
KRAS G12D :: MSS
dx Sep 2013 @47yo: IIIc T4b N2b MX [bladder invasion, 17/21 lymph nodes]

Married 28 yrs. kids: 22, 19, 15, 11, 9
SE Michigan home schooler, unemployed mechanical engineer, and programmer.


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