Hi Everyone!
We've had a bunch of up and downs over the last couple weeks regarding my treatment so I want to give you all an update on what's been going on. Here's a little summary...
On Oct 23rd, we met with the neuro surgeon at UCSF and he seemed to think that the trial in which I would have surgery with a virus being directly injected into my tumor was a good option for me. We planned for me to go to UCSF today to sign all of the consent forms and surgery was going to be scheduled for this Thursday, Nov 14th. However, last Friday, Nov 8th, I received an email from my neuro oncologist, Dr. Prados, saying that the surgeon and his team did a simulation of the surgery using my last MRI and a computer program that allows them to practice the surgery before they actually do any cutting, and they realized that they would not be able to infect my tumor with enough of the virus to make the procedure very effective. Apparently, due to the size, shape and location of my tumor, the risks/rewards were just not in my favor.
This news was really disappointing because we had really struggled to make the decision to go forward with the surgery and now it wasn't an option. My mom and I went back to UCSF today to discuss our other options again with Dr. Prados and we've come up with a new plan of attack that we feel very comfortable with. If you read my blog and remember Option 3, the nano particle treatment, Dr. Prados talked to us some more about that trial and it seems like that treatment plan isn't ideal either. He said that the results from the trial haven't been very impressive and he seemed very reluctant to go that route.
We've decided to start out trying an FDA approved chemo called CCNU. I did this chemo when I was first diagnosed and, if I remember correctly, it had some good results for a short while. It has very few side effects, mostly just fatigue and lowered blood counts, so I should tolerate it very well. It is administered in a single dose every 6 weeks for 6-8 weeks with MRI's before each new round to make sure it is still working. After those 6-8 weeks or if an MRI shows my tumor growing, I will do radiation in combination with a chemo drug called Avastin. In 2002, I did 6 weeks of radiation and was told I would never be able to do radiation again, that I had done all that my body could handle. Apparently they didn't expect me to live another 11 years and they now think I can handle another 2 weeks of it :) The last time I did radiation, my tumor did not grow again for 3-4 years, so this definitely gives us some optomism. Another good thing about this decision is that I can do all of this at our Kaiser in Sacramento and won't have to make the 3 1/2 hour trek to SF for treatment. We're a little sad though because we've gotten to know Dr. Prados and all of the nurses at UCSF pretty well over the years and now we won't get to see them regularly. However, if all of the above fails to work, I've got my awesome team there ready to come up with a new game plan :)
Big hugs, health and happiness to you all!
Laurie
