The Colon Club

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

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.

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

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

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

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.

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

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

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

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

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

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

.... WORD !!

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

Joining in w/the other Colon Clubbers:





BS

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?

plastikos wrote: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?

Hi Plastikos,

Sorry I am just seeing this comment now! I hope your Y90-SIRT went well! I did (2) of them - one in the spring and the other in the summer. The first one was easy peasy lemon squeasy. No significant side effects at all. The second one was rougher... primarily I dealt with daily nausea/vomiting for a number of weeks....but that eventually went away-

Since full efficacy of SIRT can't be judged for quite a while, my CT scan on October 11 will be the judge. But I think they worked, especially the first one -
between clinical signs improving and the behavior of my CEA (a big jump up as CRC cells underwent necrosis followed by CEA fall as it is cleared from the system).

Once again, sorry that I don't check Colon Talk often enough to have helped you with a timely answer to your question - I hope you are doing well right now!

All the best,
-DK

bitchslapped wrote: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

BS

I LOVE the pic Bitchslapped! Thanks for it & the message!

-DK37