As promised we are confronted again with change and decision… at least there are consistencies in somethings along the way.
Dr. Drappatz, the neuro-oncologist at Dana-Farber we met two weeks ago, has offered us more information and another direction. Dad spoke with him on Monday night regarding plans for today’s follow-up appointment. The tissue block was received from UCONN for the genetic testing, but the results will not be in until sometime next week. Regardless, it seems our waiting and hopes lie elsewhere now, as it has become increasingly apparent that mom is perhaps not one of the 50-55% of people who respond to Temodar and radiation treatment. Another test is just that… another confirmation that we need to look elsewhere; and thank God we have that option.
A second resection, Dr. Drappatz explained, is most likely going to create more edema and swelling, may very well cause more and permanent loss of motor functioning for mom, and the gliadel wafers do much of the same with other unpleasant side effects. Ultimately, the vaccine takes time to create. Time, at this moment, is not on our side. Because of the recurrence of the tumor, we need to move faster and sooner to look for what may work to inhibit its growth.
So, instead of sending Mama Marian for the SPECT recommended last Friday, we have landed here at Dana Farber and are going a different route instead. The last time we came for a consult, the MRI showed that the tumor looked larger; however no one could be sure whether this was an effect of the radiation or the tumor actually growing in size.
At 8:00 this morning, mom had another MRI with profusion done and then at 11am we met with the clinical fellow, Dr. Wagle, and the neuro-oncologist, Dr. Drappatz, to follow up. As suspected since receiving the PET scan results, Dr. Drappatz informed us that the tumor has grown significantly within the last few months and has not responded to the radiation or the chemotherapy drug, Temodar. Upon initial imaging, the tumor measured 19 cm. x 19 cm. The results of this morning's MRI indicate that the tumor has grown 30 to 40% and is now measuring 32 cm. x 28 cm.
The front of the tumor is what is apparently causing most of mom's neurological problems, as it is infiltrating the motor strip on the left side of her brain. If she was to undergo a surgical resection again, this part would be left behind. However, the other options may actually improve her motor functioning and tackle this area as well as the rest of the tumor.
So, we were presented with two options this morning. First, mom would be eligible to start a phase II clinical trial with Avastin and LBH. However, she would have to wait to start treatment until 60 days post radiation. As she had her last radiotherapy treatment at UCONN on the 25th of January, she would not be able to begin the trial until the 24th of this month at the earliest.
Because the tumor is so aggressive, Dr. Drappatz recommended that we do not wait for the clinical trial and encouraged us to start Avastin as soon as possible. Fortunately, we did not have to wait long and mom's nurse here, Abbey Slate-Ciampa, was able to squeeze mom into the schedule for infusion today. So, after some more blood work, paperwork, and a run to the food court for lunch, we returned for the first of her Avastin treatments... and a much needed nap for the momster.
Avastin is not yet FDA approved for the treatment of GBMs; however it is in stage II of clinical trials and has reportedly been very effective in 50-60% of brain cancer patients. The risks and side effects are different from chemotherapy and mom only needs to go for treatment every two weeks for 20 to 30 minutes. There will most likely not be an nausea or additional exhaustion like there has been with the Temodar, but there is some vascular and bleeding risk. However, Dr. Drappatz informed us that the tumor currently has no internal bleeding according to the MRI and PET scans, and this makes these risks somewhat lower for her.
So, we begin another cycle and hope that this one stands apart. Like mom said today and we lamented so many times before in the hospital, it's been Groundhog Day in the worst sort of way... we could use a break in the clouds.
