Decisions, Decisions...

OMG! It has been such a long, emotional and frustrating week!  However, I have finally made a decision about which treatment to do, so I am feeling somewhat more peaceful now.  Here's how my week went and how I came to this agonizing decision...

On Wednesday, 10/23, my folks and I made the trek back to UCSF to meet with a neurosurgeon who works with my neuro-oncologist there.  He told us more about the Tocagen trial and surgery involved in which he would inject a virus directly into my tumor.  I would wait a few weeks for the virus to, hopefully, fully infect the tumor, then take a harmless anti-fungal drug that becomes chemotherapy when it comes in contact with the virus. 

The surgery will be done while I am in an MRI machine so they can see, real time, where the drug is being injected.  Apparently, when this trial began, they injected the virus in just one quick dose but found that it didn't infect the tumors very well.  They have now started infusing the tumors over a longer period to try to ensure better penetration.  If I have the surgery, they will infuse my tumor over 3 hours while checking on me every 10 minutes to make sure as much of my tumor is infected as possible.  A major risk in having the surgery is developing more weakness on my left side due to swelling and the location of my tumor.  However, the surgeon seems to think that, using steroids, the swelling can be kept to a minimum and any more weakness that I develop from the surgery may hopefully inprove over time as the area heals.  They want 30 patients in the trial, 15 at UCSF and the other 15 at other institutions across the country.  UCSF only has 1 more slot.

I had a long phone conversation with my oncologist Thursday night, trying to get some guidance from him to help make my decision.  I had him on speaker so my parents could hear what he had to say and ask questions as well.  We basically reviewed the options and he helped us look at the risks and benefits of each.  He said that if I did another treatment and it didn't work and my tumor grew, the surgery option would likely be off the table.  After getting off the phone, my folks and I nervously said which direction each of us were leaning and, luckily, we all had the same inclination... I'm going to do the surgery.

Given the time restraint and the fact that UCSF can only take 1 more patient on the trial was what pushed us over the edge.  However, we were all thinking that this trial, while risky, seems very innovative and possibly ground breaking.  Given the several different types of treatments I've done already and the fact that eventually they all stop working, unfortunately I live in reality and have had no hope that I will ever be cured.  I've had amazing success thus far, way more than any of my doctors ever imagined, but seriously, I have brain cancer and eventually my lucky streak will come to an end.  With this trial though, there is a slim chance that my tumor could actually shrink a little.  So, while I am scared about the surgery, I'm also allowing myself to feel hopeful and even a little optomistic :)  When I was diagnosed in 2002, this trial didn't exist.  Every year that I survive is another year closer to finding a cure.

Another factor leading us to surgery is the fact that I can do any of the other treatments if it doesn't work.  Hopefully it will and we won't need to make another difficult decision any time soon, but it sure is nice to have a 2nd, 3rd and 4th option!

I have an appointment on Monday 10/28 with my oncologist to sign paperwork and start talking about scheduling the surgery.  I have to wait 3-4 weeks for my previous trial drug to leave my system and it has only been 2 weeks since my last dose so I'm thinking it will probably be the first week of November.  I'll let you all know when it will be.

Ugh, heavy stuff, huh?!?  I've been on an emotional roller coaster all week, but have felt a huge weight lifted since making this decision.  Now back to normal life for a while... catching up on all my shows, trying to exercise and lose weight, crocheting like a mad woman... all my usual boring stuff :) 

I'll let you all know what I find out in my appointment on Monday. 

Big bear hugs!
Laurie