From Computer Tyme Support Wiki
Dear Friends and Family,
As you all know from my previous announcements that I have been working on designing a custom immunotherapy treatment that has never been tried before, and the hard part as usual, getting the doctors to do it. Well - I finally got the treatment and - it appears as if it worked. And I stress the word "appears" because it's looks like it's going to take about 2 months before imaging is going to show what's happening. But my cancer symptoms are gone.
I am in a state of stunned disbelief. Too early to believe it - too late not to believe it.
On Monday June 19 I got an infusion of ipilimumab which is an immunotherapy drug. 2 days later I got a series of 3 radiation treatments (21st thru 23rd). Dosage, 3 fractions of 9gy xrays from Varian Trilogy set at 9MV. These treatment we unusual in that instead of irradiating the whole tumor, I asked that they just burn a disk in the center of the main tumor leaving the rest of the tumor undamaged. This request was very counter intuitive in radiology because they are trained to kill every cancer cell they can possibly hit and it took a lot of work to get them to deliberately leave tumor undamaged.
But that was important because I was turning the tumor into a school, not a battlefield, where I was teaching my immune system what the cancer looked like (antigens) and classify it as an enemy. By using partial radiation I created an environment where white blood cells in my immune system could interact with dead cancer and learn it.
4 days after treatment I started getting a reaction. I was queasy, low energy, aches and pains, chills. When I got home I had a fever of 101, and it occurred to me, is this the fever I was hoping for?
Fever indicates that I'm having an immune response. My immune system is fighting something. Was it attacking the cancer?
So I took a hot bath and used a heating pad to increase the fever and got it up to 103. I wanted to create heat shock proteins and signal the battle was on. Wednesday still had fever and was rather out of it. Thursday morning fever broke and all my cancer symptoms were gone.
I have aednocarsonoma and the aedno part of the name means "mucus secreting". On Thursday the mucus went to almost none. I had been coughing up a lot even before I was diagnosed last August. I went out and sawed limbs off a tree, hard work, and didn't cough up anything. At night when I lay down and in the morning when I get up, almost nothing. Energy is good. On Saturday I did a 4 mile hike. 2 miles up hill and 2 down. It was like walking up the stairs of a 60 story building, but without the stairs. Yes I was out of breath and I coughed, but didn't cough anything up.
If I have a mucus secreting cancer and have no mucus, is the cancer dead? Why do I no longer have symptoms?
I have no hard information and I don't actually know what happened but something extraordinary occurred and it is so easy to want to declare victory, but the easiest person to fool is myself and I would like to see a doctor with a before and after image showing the cancer gone. I don't have that and I'm not going to get it soon. So - stunned disbelief is as good as it gets, for now.
I have to say that although I knew this should work, I didn't expect it to actually work. I thought the most likely outcome was failure. And I definitely didn't expect that I might have gone from having cancer to possibly cancer free in just 10 days. I had planned to repeat this process at least 2 more times changing the radiation and drugs around. But now I don't know if I have any live tumor to attack anymore and no point in hitting dead tumor with xrays. At this point there are no plans for any future treatment.
Often when the abscopal effect occurs it is a "complete response" which means cured. My immune system might kill every last cancer cell. And I may have created a vaccine against my own cancer which will prevent recurrence. Note the word "may".
The implications are stunning. If this did work it could work for any cancer for anyone. It's all low tech off the shelf stuff where the secret sauce is timing and partial radiation of the tumor. Did I find the cure for cancer? Might be a Nobel Prize in it for me and a movie about my life. I'm thinking Hugh Jackman can play my part, but this is the optimistic thinking I'm trying to avoid.
Anyhow, I'm still trying to wrap my head around the idea that I might not die soon. And also wondering if I missed something and I just kicked the can down the road. But I'm 11 months into a cancer where median survival is 8 months and I'm still climbing mountains 3 months past my sell by date. So that in itself is victory.
I will write more when I find out more.
Marc Perkel Random Genius