Hey all, so I have some good news. I just got my scan results back and I have had tumor shrinkage. Now if you remember I had thought that my cancer had no growth when I last wrote my blog. Apparently that wasn’t quite true, it had grown a good deal. I wasn’t actually told this however until just today. Anyway that growth has been undone, actually all the growth in the last 6 months has been undone and then some. My tumor is now 12.3% smaller than when I started the study in June. That means it is shrinking about as fast as it was originally growing when off the meds, and it was an aggressive cancer. Now the likely cause of this sudden change is my increased dosage of sorafinib, that was the real difference these past 2 months. Also as I said before I was responding better on my half dose of sorafinib than the patients on the no sorafinib study, this is made dramatically more clear now as they apparently are not doing that well. And if you are wondering, with the way the FDA works no they will likely not be allowed to swap to my study. I was honestly a bit surprised they revised the protocol to let me try a higher dosage however so maybe they will. Also the side effects of the sorafinib are actually rather easy to cope with. They have a record of being very harsh, but I’m young and my kidneys and liver work well, even with the cancer, and I had time to adjust to a half dose, so my side effects are rather mild. There are some issues with nausea and general digestion, my face has an odd skin rash going on, my scalp, tongue, and heels often hurt, and my gums are susceptible to bleeding when brushing and the like. All in all it’s very minor, and honestly I like the side effects because side effects show you have reached a strong dosage. My system is clearly saturated.
Now in terms of future plans I should clarify we are not likely to rush off for surgery any time soon. I didn’t have time to discuss anything in this paragraph with a doctor yet, since we got the results after leaving buffalo, but here’s my thoughts. Firstly I am likely to bleed like crazy if I were to go under the knife with sorafinib in me, so they wont touch me outside an emergency for 1 month after stopping my meds. This means even if I could be operated on now we would want enough extra room to support a one month window of return tumor growth. Secondly my meds are currently kicking ass. I really don’t think that speed of shrinking was expected when it was recommended I later try surgery. Assuming there is not a decrease in speed as the tumor shrinks I could possibly kill it entirely in several months if that rate is maintained. And honestly with the way the meds work with less tumor I think the process may speed up, as less tumor means more medication to go around. I will still very likely need a kidney, and maybe some lymphnodes removed by the end of this but there is some small chance of my meds actually killing it all. Cancers do evolve rather quickly so there’s no telling for sure, but hopefully a fast enough blitz with two agents will do a lot.
I also have been feeling better lately. I’ve just recently dropped my pain meds from 20mg to 10mg and I haven’t needed many vicodin at all. That is really making a difference on my mental state. The prominent example of which is that I have insomnia. All my life I had insomnia because I just can’t stop thinking and go to sleep. When on 20mg I go to sleep right away, now I am really getting behind on my sleep. It’s actually kind of nice to have the insomnia back; two nights ago I was up late thinking about how to redesign the penal system, and while I suspect I’m still a little impaired mentally it’s nice to be thinking the random thoughts again. My appetite is doing well too, I’m not really gaining weight but I am also not vomiting or feeling nearly as bad by eating the same amount.
We also did a lot since I last updated the blog. Primarily we went to London, Dublin, and Amsterdam for a total of two weeks (I’ll be a bit brief since we did a lot). In London we went to the tower or London and I got to fire a midevil British version of a ballista (a giant crossbow). We checked out a few musicals (Stomp and Avenue Q). We went to a club, as that’s a very popular thing there and I have only gone to one before (and that was in Japan). And did various other touristy things like go to a pub, saw the rebuilt Globe theatre, went to big ben, and various other things. My main takeaway however is that I would die in London as the food, even like the Italian food, is all just terrible. I’ve always had rather keen tastebuds and upon combining that with my stomach problems I lost a few pounds there. Who the hell makes bitter pastries, and how is blackcurrant the most popular flavor of Gatorade? It just makes no sense to me, I had to go to the local supermarket to get food I could actually stomach.
Ireland was cool, we didn’t really do all that much there, but it’s the kind of place where I could feel at home living I think. We stayed a night there in a converted castle. We saw the book of the Kells. We went on a musical pub crawl. We also went to the guiness factory (reputed to have the perfect glass of guiness due to there being an issue with the tap needing to be specially built) and I had the only glass of beer I have ever found palatable (due to my tastebuds the only other alcohol I have found that I can drink without a lot of syrup in it is Tantakatan in Japan by the way). It was rather amazing actually that the beer from their special tap was totally drinkable but the beer from a normal tap in the same building was disgusting in my opinion. They also had extremely good lamb stew. But yeah, in general Ireland was the best place along the trip.
As for Amsterdam the primary purpose of that was for me to get high, since its easy in Washington to get medical pot when you have cancer. I got high twice. Once from a brownie and once from a combination bong, joint, and piece of bread with an absurd amount of pot in it. I learned bongs and joints are definitely not my things, but I can do the food, and it really does kill all nausea. If I’m high I stop eating due to stomach pain from being too full, not nausea; but I actually don’t really like the experience. My eyes feel screwed up the whole time and I’m still lucid enough to tell that I’m not as in control as I like. I definitely have some mental changes, like I lose some of my germophobia, I actually smoked a joint that a random café owner rolled and licked closed for me- something I would never normally do as that’s just gross. I also don’t trust myself at all, I know that if I was given a task like “take your pills in two minutes” my attention would break before the deadline and I’d never get the task done. As such I mostly sat in bed reading and eating while high. I did make sure however that my full last day there I didn’t get high so I could see the city. I very nearly literally saw it all. I walked across the whole thing. It’s tiny. Among the highlights however I saw a cool church, an awesome rebuilt cargo ship from the days of pirates, and went to a carnival and won lots of prizes for Lizzy. The red light district wasn’t as cool as was hoped for, also apparently it’s going to be changed in a year or so to just be a normal shopping area. Also as a side note the Amsterdam equivalent to a donut is delicious.
Oh and as a wonderful souviner we all got sick a few days before our trip ended, and I mean all of us, even the baby. The baby was pretty bad off, needing an inhaler and the like for about a week after we returned, but she’s fine now. I took a long time to recover myself and it carried a nasty stomach bit that virtually stopped my eating for a couple days. I lost like seven pounds in a week, but luckily have mostly regained the weight. That’s about it. Attached is a graph of my cancer growth/shrinkage.
Posted by jeffstonepsi 
Jeff's Cancer Update 