DK37 Experimental Immunotherapy Treatment Update

[DK37]

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

I love it CRguy - thanks!!

-DK

[CRguy]

Thanks for chekkin' back in here buddy .....

HARMONY !!!
CR

[plastikos]

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

No problem Tom. Thank you for the reply. I am now 5 days post SIRT. Uneventful save for fever the day post procedure. Hoping it works. Cant rely on CEA since I have been a non secretor since initial diagnosis so will jusy jave to wait for the scans. Although I am not part of a trial I am in uncharted territory in terms of my treatment. As far as I know there is no data on when to restart Pembrolizumab after SIRT or on the results of combining both for that matter. This is both scary and oddly exciting. Good luck on your treatment as well Tom.

[Lauren5429]

Hey Tom, just been reading this thread and not totally familiar with how this forum works - so this message could be posted anywhere for all I know!! But just wondered how you got on with your CT results? Hope your treatment is working really well for you - Lauren