DK37 Experimental Immunotherapy Treatment Update

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
DK37
Posts: 506
Joined: Tue Sep 17, 2013 8:31 am
Location: San Diego

DK37 Experimental Immunotherapy Treatment Update

Postby DK37 » Sun Sep 10, 2017 11:52 pm

For those of you curious how my "home made" immunotherapy experimental treatment (Atezo/FOLFIRI/Avastin) has been going the past month, here is the first report (as a personal blog post)!

https://adventuresinlivingterminallyopt ... om/?p=7238

Excerpt:

So where do things stand now?

I get my next PET-CT scan in October after getting Atezo/FOLFIRI/Avastin infusions every other week for about two months. I got a “baseline scan” to compare that scan against to gauge whether this off-roading experimental treatment was working or not. That recent baseline scan showed some tumors were stable as well as some tumors which were growing and there was a new tumor on my kidney.

As a scientist I am absolutely thrilled right now by what I am observing since it matches a scientific hypothesis that my clinical signs point toward the possibility that the new therapy is working. Of course this is all dependent on me not messing up the hypothesis by any placebo effect but I think that is relatively unlikely since at least that first infusion pain was intense! But the body and brain are both very complicated… so we’ll just have to see what the scan shows. There is also the chance of “pseudo progression” in this first October scan if tumors get inflamed and infiltrated by immune cells but since radiologists are on the look-out for that now days, the possibility of this giving a false impression of therapy failure is lower than it used to be.

So this is what GOING OFF-ROADING – EXPERIMENTAL TREATMENT STRATEGY STYLE feels like… welcome to the wild world of Stage IV Cancer…

To Life!

-DK37
Last edited by DK37 on Mon Sep 11, 2017 7:15 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://colorectalmsstrials.org/
2016 Colondar 2.0 Model
DK37 Science Posts List

veckon
Posts: 84
Joined: Thu Jul 27, 2017 7:44 am

Re: DK37 Experimental Immunotherapy Treatment Update

Postby veckon » Mon Sep 11, 2017 5:48 am

I’m confused. This looks like blog post, not meant for scientific publication. Are you actually in a trial or just experimenting on yourself? Anyway, I can testify to the intense pain at primary tumor site experienced when I first started Pembrolizumab. Lasted six weeks. Six weeks of hell.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

veckon
Posts: 84
Joined: Thu Jul 27, 2017 7:44 am

Re: DK37 Experimental Immunotherapy Treatment Update

Postby veckon » Mon Sep 11, 2017 5:56 am

Why combine chemotherapy and immunotherapy? Aren’t most chemotherapies immunosuppressive?
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

User avatar
DK37
Posts: 506
Joined: Tue Sep 17, 2013 8:31 am
Location: San Diego

Re: DK37 Experimental Immunotherapy Treatment Update

Postby DK37 » Mon Sep 11, 2017 7:05 am

veckon wrote:I’m confused. This looks like blog post, not meant for scientific publication. Are you actually in a trial or just experimenting on yourself? Anyway, I can testify to the intense pain at primary tumor site experienced when I first started Pembrolizumab. Lasted six weeks. Six weeks of hell.


Hi veckon - It is a blog post, my oncologist and I are doing an experimental combination outside of clinical trial, it will not be scientifically published.

I used to post on Colon Talk pretty often, not too much lately - I am an oncology drug discovery scientist who is chronicling my Stage IV CRC journey on my personal blog - explaining science along the way. I invite you to read additional posts if you are interested.

Cheers,
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

User avatar
DK37
Posts: 506
Joined: Tue Sep 17, 2013 8:31 am
Location: San Diego

Re: DK37 Experimental Immunotherapy Treatment Update

Postby DK37 » Mon Sep 11, 2017 7:14 am

veckon wrote:Why combine chemotherapy and immunotherapy? Aren’t most chemotherapies immunosuppressive?


It depends on the chemotherapy. Some are synergistic with immunotherapies (oxaliplatin is a prime example - it is highly synergistic). The immune system is complex with some immune system cells being immune active and others being immnosuppressive - so it really makes a difference which subtype of immune cell is killed off. Additionally, when cancer cells are killed off by cytotoxins they release their cancer-cell specific neoantigens that flag to the immune system that there is something "different" about this tumor than normal tissue - that it should not be ignored.

Finally, as hyperlinked in the blog post, there were additional considerations that went into my treatment choice to not go into a purely immunotherapy treatment paradigm. I have very aggressive & fast growing liver tumors that need to be controlled (to keep me alive near term) with equally aggressive & fast acting chemotherapy. Immunotherapies tend to be slower acting in many patients than faster acting chemo - in that time differential, I may not survive...

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

veckon
Posts: 84
Joined: Thu Jul 27, 2017 7:44 am

Re: DK37 Experimental Immunotherapy Treatment Update

Postby veckon » Mon Sep 11, 2017 7:27 am

Ah I understand. I am sensitive to misinformation going around the internet with our disease because most people will try just about anything out of desperation. So a counterbalance against that impulse is important if you want to be objective about treatment. That being said, I read some more of your blog and I understand where you are coming from better now. I am in a similar state with aggressive metastatic liver and abdominal tumors. The first six weeks of immunotherapy were hell to be blunt as I said, I was literally on my death bed and expected to die. But I didn’t, and things remarkably improved. But it took a long time, and my recovery is still ongoing.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

User avatar
DK37
Posts: 506
Joined: Tue Sep 17, 2013 8:31 am
Location: San Diego

Re: DK37 Experimental Immunotherapy Treatment Update

Postby DK37 » Tue Sep 12, 2017 12:08 am

veckon wrote: But I didn’t, and things remarkably improved. But it took a long time, and my recovery is still ongoing.


I am sorry to hear about the weeks of hell but very glad to hear that things are improving!

Please take care and 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://colorectalmsstrials.org/
2016 Colondar 2.0 Model
DK37 Science Posts List

User avatar
CRguy
Posts: 9167
Joined: Sun Feb 10, 2008 6:00 pm

Re: DK37 Experimental Immunotherapy Treatment Update

Postby CRguy » Thu Sep 14, 2017 5:25 pm

DK37 wrote:For those of you curious how my "home made" immunotherapy experimental treatment (Atezo/FOLFIRI/Avastin) has been going the past month, here is the first report (as a personal blog post)!

https://adventuresinlivingterminallyopt ... om/?p=7238
So this is what GOING OFF-ROADING – EXPERIMENTAL TREATMENT STRATEGY STYLE feels like… welcome to the wild world of Stage IV Cancer…

To Life!
-DK37


I've been waiting on this blog update since I emailed you buddy :shock:

1. .... no pain / no gain has been given new relevance in the Stage IV world and like you, I believe !

2. you mentioned Whether or not that viewpoint was the product of false hope or a truly positive sign – only time will tell…

... paraphrasing Master Yoda's dictum here
" Hope or no Hope there is ... Ummm there is no false hope !"
We are all with you ... There IS HOPE !

3. You, more than I, have earned the right to use my signature phrase
" my life is an ongoing NONrandomized UNcontrolled experiment with N=1 ! "

4. your protocol (Atezo/FOLFIRI/Avastin) needs a catchy nickname :
I propose AtezoFolAva ... just 'cos I can AND I DID !!!!! and it rolls off the tongue nicely :mrgreen:

My friend, you are a true pioneer and gift to the world for your commitment and generosity.

I am honored to call you friend

Love Peace and Harmony on everywhere this Journey takes us all !

CRguy
Caregiver x 3
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

User avatar
juliej
Posts: 2723
Joined: Thu Aug 05, 2010 12:59 pm

Re: DK37 Experimental Immunotherapy Treatment Update

Postby juliej » Thu Sep 14, 2017 6:29 pm

CRguy wrote:You, more than I, have earned the right to use my signature phrase
" my life is an ongoing NONrandomized UNcontrolled experiment with N=1 ! "

DK, I agree completely with CRguy! Your life is indeed a "NONrandomized UNcontrolled experiment with N=1"!

I raise a glass in your honor:

Here's to bravery and perseverance, to your brilliant scientific mind and, especially, to "thinking outside the box," to your unshakeable and constant shining spirit -- may this new therapy work and be a wild success!

Juliej
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 6/19/2017, CEA<1

Lee
Posts: 5086
Joined: Sun Apr 16, 2006 4:09 pm

Re: DK37 Experimental Immunotherapy Treatment Update

Postby Lee » Thu Sep 14, 2017 6:37 pm

juliej wrote:
CRguy wrote:You, more than I, have earned the right to use my signature phrase
" my life is an ongoing NONrandomized UNcontrolled experiment with N=1 ! "

DK, I agree completely with CRguy! Your life is indeed a "NONrandomized UNcontrolled experiment with N=1"!

I raise a glass in your honor:

Here's to bravery and perseverance, to your brilliant scientific mind and, especially, to "thinking outside the box," to your unshakeable and constant shining spirit -- may this new therapy work and be a wild success!

Juliej


Here here. I raise my wine glass to you ,Tom! Yes to what Julie and CRGuy said,

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!

User avatar
CRguy
Posts: 9167
Joined: Sun Feb 10, 2008 6:00 pm

Re: DK37 Experimental Immunotherapy Treatment Update

Postby CRguy » Thu Sep 14, 2017 9:29 pm

.... WORD !!
Caregiver x 3
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

bitchslapped
Posts: 1295
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: DK37 Experimental Immunotherapy Treatment Update

Postby bitchslapped » Sat Sep 16, 2017 12:25 pm

DK, Your daughters are darling...as is the new addition to the family, Blink. Agree 100% the love & lessons animals bring to the home.
Congratulations to you in concocting your very own "witches brew", enlisting onc as co-conspirator :P

Joining in w/the other Colon Clubbers:


Image


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
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

plastikos
Posts: 259
Joined: Wed Jan 14, 2015 6:09 am

Re: DK37 Experimental Immunotherapy Treatment Update

Postby plastikos » Thu Sep 21, 2017 4:33 am

Hi Tom. I follow your blog when I can. I remember reading that you underwent SIRT with Y90? Is that accurate? I ask because I am about to undergo SIRT next week as well. How was it? I am also on Pembrolizumab (temporarily stopped for now but will continue after SIRT). Any thoughts on the possible abscopal effect of combining SIRT and immunotherapy?
Diagnosed St. IV Colon CA @ 37, male, Kras wild type, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab 12/2016 -> pseudoprogression (?), biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Baidu [Spider], Beckster, Bing [Bot], Yahoo [Bot] and 47 guests