Hi Friends,

When JJ was first diagnosed we were told that you only get one shot at radiation with brain cancer because the brain cannot tolerate too much of it.  However, in the last few years more doctors have started re-irradiating when patients have a recurrence.  Usually it’s a smaller dose, but JJ’s radiation oncologist wants to give him another full dose.  As he said, “I was taught that you treat a patient one of two ways:  either to try to cure them or you don’t.”  He feels that JJ’s best chance at survival is with another full dose and we agree.  The new tumor growth is just behind the original tumors, so they are very close but not in the exact same spot.  If they had been in the same location, another round of radiation would have been out of the question.  Radiation comes with it’s own dangers and JJ will be more at risk for complications such as memory, speech, and reading loss.  He’s also more at risk for necrosis, which is rapidly dying tissue that presents similarly to a tumor, and can occur months to years later.  It often has to be surgically removed to alleviate symptoms.

JJ’s neuro-oncologist also decided he wants JJ to do another round of oral chemo, Temodar, while he’s having radiation.  JJ’s original genetic testing had shown that he had an active MGMT gene that makes it very unlikely the chemo will work, but we are still waiting for the results from the second surgery to see if the genetic mutation might have changed.  In the meantime, his neuro-oncologist wanted to give it a try anyway.  The chemo caused nausea, stomach pain, and memory problems the first time around but JJ wants to do whatever he can to try to beat this.

Chemo and radiation rarely work with GBM recurrence because the cancer usually has accumulated new mutations from the aggressive cancer treatment the first time around.  However, the plan for JJ is to combine radiation and chemotherapy with immunotherapy and the hope is that this combination will give JJ a chance at long-term survival.  So, JJ started chemo and radiation this Thursday, which will last a total of 6 weeks.

A new class of immunotherapy drugs called checkpoint inhibitors received FDA approval in 2011 for metastatic melanoma.  Since then, immunotherapy drugs have been approved for lung cancer, kidney cancer, Hodgkin’s lymphoma, and bladder cancer.  None have been FDA approved for brain cancer yet but there are several clinical trials ongoing right now.

JJ’s neuro-oncologist has applied with the pharmaceutical company to try to get a checkpoint inhibitor through their compassionate use program because JJ is no longer eligible for the trial he started in November and our insurance company determined they will not cover it.   Unfortunately, our plan changed last year and now does not cover off-label drug use.  In other words, they won’t cover a medication unless it’s specifically FDA approved for the disease doctor wants to prescribe it for.

We hope JJ will qualify for compassionate use and that we will hear soon because the early results with trials seem to be showing that immunotherapy is more effective with GBM when it is combined with radiation and chemotherapy because the dying cancer cells alert the immune system to come in and attack the cancer.

Overall, JJ is recovering well from the surgery, however, he is on quite a few medications to deal with his recent seizures that dull his cognitive ability and have fun side effects on their own.  Yet, he remains optimistic that the new treatment plan will work and we continue to what we can to treasure each and every day together.