DK37 Personal/Trial Update - In Case of Emergency Break Glass

[DK37]

Hi Everyone-

My first time logged onto CT for a while - things have been kind of crazy... Physically I am dealing with some increase medical issues and I have been scrambling to readjust plans - the liver issue is serious...

Full story at the link at the bottom of this post, excerpts from a blog I wrote a few days ago below:

Well… a blog post I certainly don’t want to write and I did not plan on writing… My oncolytic virus clinical trial plans were postponed at the last second.

What? How?? Why???

My disease has decided to flip a genetic switch. Tumors are allowed to do that, they are genetically unstable after all… A switch has been flipped to a “more aggressive phenotype“. What does that mean in English? It means that when I saw my CT-scan of my previously (for almost 5 years) clean liver – my jaw dropped. And not in a good way. My liver was covered with spots – too many too count. Some of them quite large.

I love the concept of the my planned oncolytic immunotherapy trial! I still do. But in this instance it has one major flaw. It does not act fast. Best case scenario, it takes a while to ramp up the immune system. Looking at my liver, in a split second, I made my decision. Those tumors needs to shrink now, as soon as possible, as fast as possible. There is only one type of treatment that does that.

Chemo. ASAP. Today.

This was definitely a big shock. I hope to try the oncolytic virus trial in the future but we shall see if that is offered to me… But this is why I have developed layers upon layers upon layers of plans over the past 2 years. Cancer is wily foe. It surprises you when you least expect it. To combat that kind of foe, you need to have your own surprises lined up. And this is mine. My goal has not changed, just some facts on the ground. My goal is to beat my cancer, using science and my brain as my weapons, by any means necessary. Today was I disappointed? Yes. A bit scared? Yes. Deterred? Never. This is why you should always have plenty of planes on your taxiway – you never know when one might be needed.

I mean this more today than perhaps ever before. To Life!

https://adventuresinlivingterminallyopt ... eak-glass/

-DK37

[Tim UK]

Have you discussed stereotactic radiotherapy (cyber knife) with your team for the liver spots? I just had a long-dormant liver met come back to life whilst on my otherwise positive immunotherapy trial. The docs prefer this technology over RF ablation by virtue of its accuracy, and the possibility of a synergistic abscopal effect - which can reduce distant mets. May be worth a look for you.

All the best,
Tim

[karaj]

Wow. So sorry to hear about this turn. Thank you for, once again, turning your treatment into a learning experience for us. Hopeful to hear good news soon for you soon.

[Maia]

To life, Tom!
Let's keep walking.

[jortego128]

Damnit...Not something I expected to hear from your newest update Tom. At least you were clear and decisive on what you need to do. I hope that chemo gives you the response/shrinkage needed to begin the oncolytic virus protocol ASAP. I will continue to pray for you. To Life!!!

[LPL]

DK37,
I hope you will have a Big Success with your plan !
Thank You very much for All your reseach and for sharing info.
Kind Regards /LPL

[CRguy]

To LIFE ! indeed my friend
... sending you some virtual "refueling" trucks to keep your planes gassed and taxiing ... always READY for takeoff
WORD !

Just an outta the box thought here though :
with all the testing and "science" you have thrown into the mix,
would you have the genome studies needed to check against the POG project hotlist of "outta the box" receptor / pathway response matrices for your personal tumors ?

I am always thinking about this initiative and there is a show on tonight I am recording here.... which is what made me think of this.
(( ... and it is coming from my own BCCA CRC alma mater ))

Love your attitude BTW. My old medicine prof's words ALWAYS ring out in my mind :
"You will miss more for not looking... than for not knowing."

YOU are doing that "looking" in spades .. always on the Journey
and we be with you ...
SO just wanting to send you another plane to back up your immunotherapy plane In Case of Emergency Break Glass on the taxiway

Mega Cheers and Harmony coming your way
Thanks so much for all you share with us here, and all around the Web-oshpere

CRguy

[Steph20021]

This is unexpected but thankfully you are smart and prepared and I have absolute faith in you. You teach me so much. Ill be sending you all the
good vibes! To life!

[testing765]

My prayers are with you Tom. I wish the cancer had not progressed but I am glad that you have well thought out plan of action to deal with that.

[DK37]

Have you discussed stereotactic radiotherapy (cyber knife) with your team for the liver spots? I just had a long-dormant liver met come back to life whilst on my otherwise positive immunotherapy trial. The docs prefer this technology over RF ablation by virtue of its accuracy, and the possibility of a synergistic abscopal effect - which can reduce distant mets. May be worth a look for you.

All the best,
Tim

Hi Tim,

SBRT is on the possibility list - if we do a liver specific treatment, we are leaning a bit more towards HAI pump right now but everything is still under discussion and assessment. While those plans are being worked out, I am doing the systemic chemo because as far as we know, these mets may be quite sensitive and respond. We'll find out soon.

Cheers,
DK

[BrownBagger]

Good luck with the systemic chemo, DK. The HAI pump, if you can get on it, has proven to be pretty effective.