first MRI after standard treatment

We met up with the doctors at UCLA to go over Mark's first MRI after completing standard radiation/chemo therapy.

Recap: Missed 6 out of 42 doses of temodar during radiation because of low nutrophyl counts. Everything has been going great. Currently off of dilantin, and on 2000mg of kepra as anti-seizure medication. Did have a small seizure (10 minutes) about a week ago, but was low on the dosage of kepra at the time. No headaches. Has been biking and doing well. Did the normal neurologic tests and did fine. No visual problems.

What are the results of today's MRI?
In the axial cuts, it looks like the blood in the cavity is now gone. Just see a thin rim of contrast, but no dense cottony areas, which means it looks pretty good. There is one area that looks a little questionable at the top, but probably how cavity chose to shrink down. The cavity is shrinking. In the coronal view, there is an area that shows the same difference, but it looks like an artifact from the shrinkage of the tissue, but definitely needs watched. Wants to check again with an MRI in a month. Overall we're happy with the scan. Rest of cavity looks clean and good, everything is dramatically decreased (size of cavity, blood residue, swelling, etc.) Mark also described how he felt that his motor skills were getting back to normal.

I read that there are some imaging features that can correlate to the survival of GBM patients? For example, it stated that there was a survival advantage of brain tumor patients showing nCET on contrast enhancing MR scans? Mark did have some nCET on original tumor scans which may indicate a better survival rate. Not proven, but it is currently in a study and gives us some hope :)

Will be starting back on Temodar at a higher dosage. Will be watching to see how sensitive Mark is to it and will be getting blood tests to watch counts. What if counts go down, would we take some sort of boosting drug? No, don't like to boost wbc counts during chemo. For this round, we will start at a 75% dose (300mg) a day and will check reaction, if blood counts ok, will go to 400mg but no higher than that. Will take in evenings with kytril 5 days out of the month and were given a calendar to track it.

How often should blood tests be taken now? We will take one today and then will take on day 21 and day 28.

Will we need to start up bactrim again? Depends on if lymphocyte count is 600 or lower. Can tell by blood tests.

We had the EGFRvIII and PTEN test finally done on Mark's tumor.
We reviewed these slides.
PTEN: mostly intact (2), but focal area is slightly deficient (1).
vIII: weakly positive (1)
These results of the pten and vIII are not what was considered as meeting the criteria for use of tarceva.
Does this give any indications to avoid anything else? No, this is only a test for tarceva.

Last time we talked about Verinostat (saha) that is a current trial about to open at UCLA that is done in combination with temodar which is a phase 1 study, so we don't know if it leads to strong drop in blood count or what the other side fx are that can be associated with it. Gets evaluated every month. Would we be eliminated if we do dendritic cell therapy? You could not be involved in both trials at the same time and would have to do this trial after dendritic cell therapy. This is a phase 1 study (not open at the moment) that is looking at toxicity of verinostat. If we do this, we can't also do the dendritic cell (phase 2) study, for now, we are choosing the dendritic cell trial.

Last time, you all mentioned that with GBMs, the blood brain barrier is already disrupted. Is this common knowledge? Why do others say it is difficult to get past the blood brain barrier? You can tell if the blood barrier is disrupted just because of the fact that the contrasting fluid can get into the tumor to show up on an MRI. Still need agents to help get drugs past the barrier in other areas of the brain. The tumor does cause a local compromise in the blood-brain barrier.

Questions about recent Trials that we've found -

Have you heard about phase 2 trial at MD Anderson that tests temozolomide alone or in combo with thalidomide and/or Isotretinoin (accutane) and/or Celecoxib (celebrex)for patients that have had radiation in past 5 weeks? UCLA used to give all patients temodar and accutane together, but shown not to be too effective and had lots of sidefx (dry skin, etc) so they no longer do this, we're waiting to see more data about celebrex being effective before committing to use it, thalidomide has a side effect of being too fatigued at the dosage that needs to be given and disrupts quality of life issues so we don't use this drug now either.

I found a trial that used DCVax to treat GBM - The description of this one sounds identical to what Linda Liau is doing and looks like it is the same thing. Her trial is being done at several centers around the country.

Poly ICLC - UCLA had done this one in the past, but not doing it anymore (not open right now)

I read about a UCLA phase 3 trial with Enzastaurin? This one is on its way, but it is for recurrent tumors.

We will be involved in a UCLA research study that compiles medical information, mris, lab tests, pathology information etc. from many current brain tumor patients. The study is designed to compare this information with others with same tumor types to try and find similarities in treatments that are working for specific tumor type or any other useful statistics. It is an anonymous study. Can choose to withdraw from study if desired.

Coming up:
Will be taking chemo 3/15- 3-19
Meeting with Dr. Liau to discuss dendritic cell immunotherapy on 3/22 @ 3:30pm
Will get two blood tests in the next 4 weeks.
Will be scheduling an MRI in 4 weeks.