Next Steps

We met with our Neuro Surgeon at UCLA on Monday.  Jen was preliminarily eligible for the Tocagen (a type of viral therapy) trial.  However, Jen's doctors informed us that there was still a 30-40% chance Jen would wash out during the final trial evaluation process which wouldn't be able to be completed until after the final FMRI, Brainmapping, Neuro Cognitive study, etc.  These tests would all not be able to take place for at least 1 1/2 - 2 weeks.  She was looking at surgery on the 25th of May, but wouldn't know if she was actually eligible for the trial until close to that date.  On top of all this, even if she qualified for the trial, there would only be a 50% chance of actually receiving the drug as this is a third stage trial.  In addition, there is concern that her scalp wounds presented an added risk of infection and the skin on her scalp is fairly tight and may create difficulty with closing the incisions properly.  We would probably need to get a plastic surgeon involved.  Meanwhile until this time the tumor would grow, which might erode Jen's ability to communicate.  The surgery may take away additional language function and if she did get the actual drug, the injections could further take away expressive function.

A quick explanation about Jen losing the ability to communicate.  The danger with this is not just related to speech.  She could lose all ability to express herself.  Whether that is writing, speaking or even using a device with pictures and words for Jen to point to.  How much she would lose cannot be determined in advance, and this may eventually happen just from the cancer growing on it's own.

Jen and I both have noticed a slight decline in just the last couple of weeks as it is.

Our only real option for immediately halting the progression was Avastin.  We had already worked to schedule that appointment for Monday afternoon as an option.  Due to the strike at UCLA, they were unable to reschedule the Avastin treatment.  They wouldn't be able to reschedule until Thursday and Jen wouldn't be able to get an appointment until the following week.  UCLA wasn't even able to tell us whether we could get her in on Monday or have to wait until Friday of the next week.  Not until after the strike.  So if we delayed any, our immediate option would have almost the same time delays as our surgical options.

So with all this to weigh in, we opted for Jen starting on Avastin.  Avastin is a blood vessel growth inhibitor.  It buys time for about 50-70% of patients who use it.  Whether or not it works for Jen, we won't know for sure until her next scan on May 31st.  As I mentioned previously there is also the possibility that Avastin can kill the patient.  About 1% of patients who use it die from a brain hemorrhage.  This can happen at any time while using Avastin, even months after starting on it.  It's a low risk, but not insignificant.  If it works for Jen, the average response time before another recurrence is about 6 months.  Some patients get much less and as with all treatments some patients are outliers and get significantly longer.  Some patients get years. Hopefully, Jen will be one of those patients.  As long as it is working she will need to have IV infusions of the drug every 2 weeks.  If Avastin works for Jen her future MRIs will need to be interpreted differently as the drug can hide the contrasting regions of the tumors.  Her doctors have other ways to monitor tumor progression though.

The other side effect of Avastin is that it makes wound healing difficult.  The wounds on Jen's scalp have begun to heal and hopefully will continue to do so, but may be impacted by this drug therapy.  If her wounds heal sufficiently, we would like to resume the use of Optune.  We will have to tread lightly and may have to either use it much less or have frequent breaks anytime wounds begin to appear.  However, we do believe that Avastin plus Optune will provide a longer response than Avastin alone.  Hopefully Jen can begin using it again soon.

Using Avastin does not rule out either the Neural Stem Cell trial or the CAR-T trial at City of Hope that I have previously detailed.  We will know within about 2 weeks whether she is ruled out from the Stem Cell trial and whether or not they were able to harvest enough of the specific white blood cells that they need for the CAR-T.  If all is good, these will most likely be our next steps.

Ultimately, like Jen and I have always felt this is all about buying time.  If you can buy enough, perhaps there will be something else that becomes available to buy more.  If nothing emerges from the pipeline, at least we will have bought more time to spend together.

We met with Jen's seizure doctor on Tuesday and although we won't be lowering her dosage immediately, we are changing the dose schedule to break up the morning dose.  Half will be given in the am and half in the afternoon.  Hopefully this will help with her fatigue and increased anxiety some during the daytime while she is awake. She does seem to have acclimated to the increased dosage a little already.  Hopefully this change will help further.  If the Avastin works and Jen doesn't have any more seizures we may be able to slightly lower the dosage.

As always, please keep us in your prayers and thank you to everyone who has been there throughout.