All Good Things Can't Last

Well, unfortunately my run of unbelievable luck on the clinical trial at UCSF that I've been on for THREE years has run out :(  I knew this day would come eventually, but it's still a bummer getting the news.  Comparing the MRI that I had a couple weeks ago to one's in June and August, there is a small spot on my tumor that clearly shows slight growth.  This was enough for my doctor at UCSF to determine that the experimental drug that I was on is no longer keeping my tumor stable which was enough for him to take me off of the trial.  I still consider myself extremely lucky though, because I believe that I was the last person on the trial for nearly 2 years!  For some reason, my tumor was more receptive to the medication than any others.

So now, once again, we are in the uncomfortable situation of choosing a new path of treatment.  Fortunately, my doctor and his team have offered us at least 4 options and I think my family and I are close to deciding on one.  Here are my layman's descriptions of our options:

1)  Try some of the chemo drugs that I've already done in the past to see if they start working again since I haven't done them for so long.

2)  Do 1-2 weeks of radiation, along with a chemo drug that I had in the past.  This is an option that, 11 years ago when I first did radiation, I was told I would never be able to do again.  I was told that they had given me all the radiation that my body could tolerate.  Apparently they didn't expect me to live another decade and UCSF's radiation oncologist thinks that it has been long enough an interval now that I could do a little more.  Last time I did radiation, I basically went into "remission" for several years :)

3)  A UCSF clinical trial using nano-particles.  This is a trial that I was approved for back when I was approved for the trial I just finished, so it has been ongoing for at 3 years which gives me a fair amount of confidnce in it.  With this one, I would receive the trial chemotherapy by IV infusion at UCSF and spend 3 days in the hospital, I think for observation.  Then I would return to UCSF for the treatment every 3 weeks, but would only need the hospital stay for my first infusion.  The way I understand it, this drug is designed to find my tumor, then sort of "explode" a super dose of chemo into the tumor, hopefully having a bigger effect than standard chemotherapy. 

4)  A clinical trial sponsored by a company called Tocagen.  In this trial, I would have surgery to inject a virus into my tumor, then wait 3-4 weeks for the virus to invade all of the tumor.  I would then take an oral anti-fungal drug, already FDA approved and harmless to the rest of my body.  However, when the drug meets the virus that has infected my tumor, it turns into a chemotherapy drug attacking only the tumor cells.  This trial is really exciting, but there is some definite risk with the surgery due to the location of my tumor.  Too much swelling could cause me to lose more motor function on the left side of my body.  I have an appointment on Wednesday, 10/23 with UCSF's neurosurgeon to discuss the risks.  Check out the following link to see more about the trial: http://www.tocagen.com/.

Right now, I'm leaning toward doing #3.  Since it is a trial, nobody knows if it will be around in a year or two & since it's been going on for a few years, it must be showing some signs of hope.  I still need to find out more about it though before I make a final decision like how many people are on the trial, what phase the trial is in and how effective it has been for those who have participated in it.  It seems like a minimally invasive option that my doctor appears to favor. 

Since #4 involves a touchy surgery, I'm a little less inclined to start with that one.  Maybe keep it in our back pocket in case #3 doesn't work.  It seems a little counter-intuitive that I wouldn't start with  #1 and #2 because they are already FDA approved, but I can do those at any time.  I'd rather start with something experimental and more advanced, that hasn't been around for decades and that could prove to be the magic bullet.

With the input of my doctors, family and friends, I will likely be making a decision by next week and starting treatment soon thereafter.  I'll let you all know which way we're going and when treatment will start :)

As always, thank you to all of my family, friends, doctors, nurses and strangers who have shown their concern, compassion and unending support for me through this crazy ride!  I truly love you all and you guys are the reason I keep going with a smile on :)

XOXO,
Laurie ;-)