Today I received the first vaccine shot made from my own home-grown tumor. I have to say, there isn't much excitement to report. In fact, the scariest part was when the flight to LA was showing an hour delay, so I had to wrestle with United to get onto an earlier flight. And the most exciting part was when I finished up at 4:30, and the taxi managed to get me to LAX in under 30 minutes, in spite of commuter traffic!
Beyond that, the event was as follows:
1) Go to lunch at Jerry's Deli and be disappointed that, again, no stars are visiting me
2) Head to the appointment and take Benadryl and Tylenol 30 minutes before taking the vaccine
3) Get the vaccine shot and hold your arm up for 15 minutes
4) Try to sleep in an awkward chair until they wake you up to measure blood pressure and temperature
5) Go home
Of course, as we all know, sometimes no news is good news.
Monday, March 14, 2011
Wednesday, March 9, 2011
Interesting Phase 3 Clinical Trial
Here's a video of an interesting treatment explained pretty well. Not for me right now, but maybe down the line....
Sunday, March 6, 2011
2nd verse, same as the first
Last year, on March 6th, I had one of my best days EVER! Well here we are, around the same time, one year later. And I now have evidence to back up the fact that the Huck Cancer tournament is amazing. This year my "bro" headed out from Michigan to join in the fun. Since we each raised over $1,000, and we were on the same team, well...let's just say our taking the championship looked suspiciously like someone fixed the system. In fact, all of the games were pretty close, and he and I were so physically spent by the end, we pretty much hobbled to the party that night and all of the next day (and we'll see about tomorrow too).
Regardless, win or lose, this tournament was incredibly wonderful for me. Once again we had a huge group of amazing volunteers pulling it all together, run primarily by Renata and Coleo, but also with most of the same amazing people as last year. In addition, a lot of my coworkers joined in the fun and helped out tremendously. We also raised over $40,000 for the Livestrong Foundation again. So for all those people who did so much to make this tournament happen (and honestly, I was not a big part of it myself), you deserve tremendous praise and thanks. Therefore, as a representative of the "Cancer Party", I present to you the official statement as follows: Thank you thank you thank you thank you thank you!
Now...time for me to go to bed so my muscles can practice loosening up before I have to walk again.
Regardless, win or lose, this tournament was incredibly wonderful for me. Once again we had a huge group of amazing volunteers pulling it all together, run primarily by Renata and Coleo, but also with most of the same amazing people as last year. In addition, a lot of my coworkers joined in the fun and helped out tremendously. We also raised over $40,000 for the Livestrong Foundation again. So for all those people who did so much to make this tournament happen (and honestly, I was not a big part of it myself), you deserve tremendous praise and thanks. Therefore, as a representative of the "Cancer Party", I present to you the official statement as follows: Thank you thank you thank you thank you thank you!
Now...time for me to go to bed so my muscles can practice loosening up before I have to walk again.
Tuesday, March 1, 2011
Ooops
Sorry. I kinda left people hangin'. So here's a quick summary of answers to questions you probably all have, but thankfully my dear friend Poopapuparama voiced:
1) How many treatments so far?
None. I don't start the actual vaccines until March 14th. They will be day trips to LA taking about 3 hours. I start with some Benadryl and Tylenol, and then I get "the shot". Then they watch my reaction for the rest of the time. I get 3 vaccines total, every other Monday, starting the 14th. Along with the vaccines I need to apply Imiquimod to my (soon to be shaven) armpit for 5 days surrounding the vaccine. This is meant to aggravate my immune system to enhance the vaccines.
None. I don't start the actual vaccines until March 14th. They will be day trips to LA taking about 3 hours. I start with some Benadryl and Tylenol, and then I get "the shot". Then they watch my reaction for the rest of the time. I get 3 vaccines total, every other Monday, starting the 14th. Along with the vaccines I need to apply Imiquimod to my (soon to be shaven) armpit for 5 days surrounding the vaccine. This is meant to aggravate my immune system to enhance the vaccines.
2) How do you feel from them?
We'll see....
We'll see....
3) Is sis still there?
Nope. Big sis left soon after we got back from LA, and "W" left that Saturday. Last week I spent time recuperating, but this week I'm actually back at work! It's going pretty well, though I haven't yet managed to get Jimmy to sing me that song he wrote....
Nope. Big sis left soon after we got back from LA, and "W" left that Saturday. Last week I spent time recuperating, but this week I'm actually back at work! It's going pretty well, though I haven't yet managed to get Jimmy to sing me that song he wrote....
4) How long do the treatments last each time and for how long will you be doing them?
See #1. But there are only 3 treatments, and then after the treatments I have another post-treatment appointment down in LA to see how they might be working and also to discuss the possibility of starting another chemo. Yeah, sure, I'm looking forward to that....
Other than that I'm doing relatively well. A little better every day, but knocking on wood a lot....
See #1. But there are only 3 treatments, and then after the treatments I have another post-treatment appointment down in LA to see how they might be working and also to discuss the possibility of starting another chemo. Yeah, sure, I'm looking forward to that....
Other than that I'm doing relatively well. A little better every day, but knocking on wood a lot....
Wednesday, February 23, 2011
I was SO close!
The plan was to head down to LA for the leukopheresis and removal of the stitches. And the plan itself was executed flawlessly. I headed down there yesterday and met up with H-Lo to be a tourist and grab some dinner in Santa Monica. I spent the night in a hotel that was walking distance to Cedars-Sinai, and woke up early this morning to make it there in time to start the process. The nurse in the blood donation lab was very kind, but also very conservative. I was told under no circumstances was I allowed to move my arms once I was hooked up. This was a little disturbing since my initial thought was that I could sit there for the possible 8 hours reading books, writing e-mails, and watching movies. Luckily the casa Deepistan had given me some movies to bide my time, so I set up my laptop to watch one of my faves, Up. Then I just needed to produce the proper dendritic cells quickly enough so my battery wouldn't just wear out. I managed to finish up in about 3 hours, leaving minutes on my laptop and giving me enough time to rush up to the surgeon's office to get the stitches removed before lunch!
So what am I complaining about? Well...this whole procedure excited me so much because it offered me the chance to finally shower as soon as I got home! And then I get the news - no showering for another 24 hours, AND you should wear a hat to make sure the scar doesn't get infected. Yeah, not much to complain about, I admit...but if you had to hang out with me lately, you might feel the same way.
So what am I complaining about? Well...this whole procedure excited me so much because it offered me the chance to finally shower as soon as I got home! And then I get the news - no showering for another 24 hours, AND you should wear a hat to make sure the scar doesn't get infected. Yeah, not much to complain about, I admit...but if you had to hang out with me lately, you might feel the same way.
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....
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....
Tuesday, February 15, 2011
Welcome to the "Hotel California"
You can check out any time you like, but you can never leave....
Our expectation was to head home directly after our meeting this morning, but it turns out the quickest opportunity I have to enter the clinical trial is to start by getting my qualification blood tests tomorrow. Luckily we have such fabulous cousins here willing to let us stick around for another night to start that process! Then in one week I will be heading back down here to have the cells taken out of my immune system for the manufacturing of the vaccine. All of this will be explained in more detail tomorrow, so until then, remember, there's plenty of room at the "Hotel California"....
Our expectation was to head home directly after our meeting this morning, but it turns out the quickest opportunity I have to enter the clinical trial is to start by getting my qualification blood tests tomorrow. Luckily we have such fabulous cousins here willing to let us stick around for another night to start that process! Then in one week I will be heading back down here to have the cells taken out of my immune system for the manufacturing of the vaccine. All of this will be explained in more detail tomorrow, so until then, remember, there's plenty of room at the "Hotel California"....
And the winner is?
The "G. Kravitz Band" (aka "Kravesis") and...my mom! They both guessed ZERO staples, which is how it worked out this time. Stitches only. I guess my original surgeon wasn't lying when he said that the screws and scar would let someone open up easily into the same area of the brain. They didn't even shave a large part of my head, just a strip along the old scar. This definitely relieves my biggest concern, which was whether I could actually change the name of my blog....
Today I'm about to head off for my appointment with Dr. Yu, and then it's back to SF to join the wonderful drizzle. That might be a good thing to keep me inside for more rapid recovery.
Today I'm about to head off for my appointment with Dr. Yu, and then it's back to SF to join the wonderful drizzle. That might be a good thing to keep me inside for more rapid recovery.
Monday, February 14, 2011
Tinseltown!
Today I got to spend a little time seeing the other side of the world, through the frame of a camera in Tinseltown! My cousin here is a music editor working on a film for Warner Brothers, so his he and his wife offered my sister and I a chance to head out there and check out the scene and have some lunch. It was really cool to be able to walk through a far less publicized studio to see what it's like to shoot films there. It's really amazing what it takes to throw together a final piece. We had a really great experience seeing what went behind the scenes and how much fun such a career could be like. We also got to check out the museum, which for several of you out there would've been a dream come true (Peat). The entire top floor was dedicated to the Harry Potter series. Over my head even before the tumors, but very cool nonetheless. I did hit my limit while I was there, but managed to get back "home" in time for a solid nap to recover. In addition to the random energy levels (most likely tied to the steroids I'm on) I'm also noticing a similarity in slight memory loss. Not nearly as bad as the last time, and still awaiting recovery, but frustrating just the same. Weah weah.
Sunday, February 13, 2011
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