Boy, I'm really bad at this! Honestly though, I haven't posted anything because there hasn't really been much to write about lately. I've been on the same trial drug for roughly the last 15 months with very little to tell other than the fact that (luckily), my tumor has responded well to the medication and has remained stable. Apparently, I am the last person still in this trial, as everyone else has had to be taken off of the drug because, either their tumors had grown or their immune system became too compromised. However, I received news today that perhaps my luck on this drug has worn out as well.
I had an appointment today with my doctor at UCSF to discuss the results of my latest MRI from March 20th. In comparing it to my last one from January, and another from last May, it appears as though the main mass as "collapsed on itself" somewhat, according to my doctor, making it smaller (good news), but that there is a new "tail" portion, starting to grow towards the back of my head, more into my motor strip, making him "concerned" that the trial drug I'm on is not working anymore, at least on that new tumor area. When he checked my strength and reflexes, like he does at every visit, it seemed as though my left leg has lost a bit more strength, contributing to his concern that my left side motor function is being compromised. As a result, he suggested four options for us to consider going forward:
1) Continue on the drug that I've been on for one more round and have another MRI in 4 weeks, as opposed to 8 weeks, as I've been doing since I started on it. This would likely confirm if the "tail" is growing or not and we could make a decision after that. The problem with this scenario is that to start any new trial or protocol, I have to be off of this medication for at least four weeks, so that would mean 3 weeks on the drug, an MRI, then 4 more weeks off the drug before I could start a new treatment, so nearly 2 months with very questionable benefit.
2) Start on another trial that I have already been approved for. I think I wrote about this one before. It is some kind of "nano" drug that would be given intraveinously every 3 weeks. He described it as a super concentrated amount of a drug that is already approved, that would just go right to my tumor and hopefully kick the crap out of it. So far it has been in a phase I trial, meaning that they are trying to figure out maximum dosage, which he says they are just about at, then it will go into phase II where they study more about how effective the drug is. It sounds like I would be coming in at the phase II stage, so I would be slightly less of a guinea pig. He sounds pretty excited about this drug though and its potential.
3) Start on another trial where I would have surgery and they would implant a virus directly into my tumor, then treat me with an already approved chemo drug that is known to attack this type of virus. Apparently this virus will only attack cancer cells, and this drug is known to work on this type of virus and whatever it is attacking. My doctor sounded fairly excited about this option because it is such a targeted approach. The main problem, again, is that my tumor is so close to my motor cortex, that more weakness or paralysis is a possibility from the surgery. He said that he needs to discuss it with their neuro-surgeon and make sure that Kaiser would OK the procedure.
4) I had previously been told that it would be dangerous for me to do any more radiation, but apparently over the last 10 years things have changed. He said that I could try doing more radiation in combination with a chemo drug I did in the past, Avastin, which worked for me for a while, but then stopped working and my tumor grew again. He said that using Avastin with radiation has shown much better results than Avastin alone.
He meets on Thursdays with his colleagues to discuss individual cases, so he said that he will call me on Thursday so we can hopefully decide what direction to go in. I'm taking this as some kinda bad news, but bad news that I knew was coming eventually. This doctor, Dr. Prados, is so amazing. He is direct, no beating around the bush, but also encouraging and innovative and I know he will never give up on me. I always leave his office with a sense of optimism and today was no different. I know he will be honest with me if there ever comes a point when we don't have much to be optomistic about, but he certainly has not given me that feeling at all. I just feel like this is yet another hill to climb on this damn cancer roller coaster and I'm sorry that you all have had to hang with me on it for the last decade, but just know that I appreciate all of your support! In recognition of the last 10 years since I was diagnosed, I'm finally going to get my first tattoo on Wednesday... it will be the date I was diagnosed, January 8, 2002, then 10 slash marks (you know, 4 lines, with a 5th line thru them), to mark each year since. Then every year from now on I'll commemorate that day by getting another slash. I plan on leaving enough room for 50 or 60 slash marks :) I know its kinda morbid, but I think of it as a celebration since that was pretty much the worst day of my life and I've had so many more awesome days to celebrate since then. I never fully appreciated all of the amazing people in my life until that day and have been thankful for all of you since :)
I'll post a picture of the tattoo after I get it (if it turns out good, fingers crossed) and let you know what treatment we are going to take after I talk to Dr. Prados on Thursday. Hugs and kisses to everybody!
