Thursday, February 17, 2011

Yep, I'm back!

I arrived back in San Francisco last night, but kept a little on the down low today after having dinner with both sisters and my freighbor. At what most would consider an ungodly hour, my "Big Sis" left this morning and my other sister "W" is sticking around to take care of me until early Saturday morning. I'm a lucky man to have the family I do!

Unfortunately I'm also sometimes a little spacey. Somehow I managed not to record the discussion with the amazing oncologist Dr. Rudnick, whose name, for as much as I like him, must have been carved out with the tumor, as I consistently have not been able to remember it even once since I first met him. And I really do think he's been one of the best oncologists I've talked with so far. (Yes, I did try to use the word "Redneck" to give some association - didn't work so well).

Luckily my "Big Sis" took really good notes that day, so here's a quick summary. Essentially it's believed that the recurrent and obvious tumor sprung from cancer that has been around for a very long time and just recently became more aggressive. The aggressive part of the tumor was growing very rapidly. The number 20% was mentioned for the aggressive, compared with 3% for the non-aggressive part, but to be honest, I can't remember what those referred to at this point. Can you remind me "Big Sis"? Anyway, the part that was really good to hear was that about 99% of the aggressive tumor was removed in the surgery (thanks to the verbal mapping), along with some of the non-aggressive tumor. There is still a very large area of the non-aggressive, spread out tumor, but that's hopefully the part that will be attacked by the vaccine.

In addition, the tumor was tested and showed that it is not sensitive to Temodar. This doesn't necessarily mean I won't go back onto Temodar again, but it does lean in that direction. Apparently on the plus side, "old" tumors like this that aren't really sensitive to Temodar have shown good reactions to the vaccine (we think). And the vaccine might also sensitize the remaining tumor cells to any other types of chemo which have yet to be applied. Of course, if you get a lemon, make lemonade. I try to look at this result and think, well, Temodar made me miserable, so maybe this is a benefit!

My next step is to head down to Lala Land next Tuesday night for a day-long appointment Wednesday. They're going to extract my dendritic cells and replace the rest of my blood. They'll then use those cells and the tumor to make up the vaccine. Also that afternoon I'll get my stitches removed!

About 2 1/2 weeks later I'll head back down there for my first injection of vaccine. This will happen every other week for 3 visits, followed by another MRI and some blood tests checking to see how everything went. Part of this investigation will determine how sensitive my immune system is to the vaccine, giving me some indication to its effectiveness. It will also lead to the decision about whether I'll be picking up another chemo treatment. These conversations will involve Dr. Rudnick and Drs. Clarke and Butowski from UCSF. It's been a pretty positive process so far, and I've really liked the experience I've had down at Cedars-Sinai.

In the meantime, I'm trying to get my life back slowly. I'm still not completely recovered (sheesh, it's been a week, I should be better by now!), but as the steroids reduce, my sleep increases. I do need to slip in some exercise soon just to take advantage of my meds....


  1. Hey guy, This sounds like it is going so great - what an awesome thing for them to be able to do the surgery in a way to prevent damage yet remove 99% of the really bad area. that's so amazing & is such good news - gotta love science when it works to this end. and of course you will be wanting to start your exercise again a week after brain surgery ... you are amazing!!!! can't wait to hear how your vaccinne kicks butt on the rest of the tumah! You are my LIVESTRONG hero!!! Lots of Love!

  2. Here's what I remember--Dr. Rudnick referred to the 20% and 3% as the "turnover" of the cells, which I assume meant the percentage of cells becoming cancerous in that area, but it probably would be worth clarifying with the doc. And I don't think you mentioned that Dr. Rudnick also said that people with a tumor that converted from lower grade to more aggressive (as yours apparently did), rather than starting out as GBM4, generally have a better prognosis. It sounded like there are more treatment options for these tumors. I think he also said that the 20% and 3% were low percentages, which is also a positive marker. That's all I can remember without my notes....
    Love you! Take care.

  3. I love reading your blog to get a dose of your attitude. You are so incredibly positive. Yay!