spoke with the main UCLA oncologist

This is our main oncologist contact at UCLA, but he was of course on vacation last week, so we didn't get to meet with him personally. We had more questions so set up a phone conversation to get some answers...

Name: Dr. Timothy Cloughsey
Nurse: Mady Stovall

Need contacts of survivors? Any websites or published data? Have different people, would need to contact them first
When can we do the MGMT test? People having difficulties with the test and making it a clinically useful test. The study that is done cant be done reliably each time. There are some general things that can be done with the menthalation that can be done in younger patients. Our scans show less edema and tumor is more localized tumor. It is a difficult test to do and be reliable.
Studied 110 scans before surgery that were glioblastoma. 2 features that were predominately important: necrosis, extent of swelling (ours is low which is positive) areas of non contrasting tumor, size of necrois is now known
Still believe that ours had a defined boundary vs. one that was more diffused? Still the case
Does a tumor board actually meet to discuss best method of treatment for our case? Mostly what happens is we have a set way of treating these tumors, we meet every week, we have about 100 new gbm patients in a year. We have a pretty good idea of how to treat them. Tumor board meets (pathologist, surgeion, etc) and clarifies diagnosis. Standard of care therapy at this point is radiation and temodar. There isn’t more that has been proven at this point that can be done. We don’t recommend gamma knife boosts cause its not proven effective in randomized setting. We have other experimental approaches, but studies on hold and we don’t want to hold up therapy waiting for these. After radiation completed, ther are other possibilities of combining with temodar, we have to see how things are going and what is availability.
Need pathology slides, how do I get those? Call pathology dept. Takes 3-5 days, do we really need to wait that long? Everything should be completed, final sign out was 1/3/06. Not sure what the issue is that holds it up?
Geminsto feature seen? If so, it may determine if tumor will do well with radiation. Don’t think it is a reliable finding. They usually do describe it if it is there.
Most of what we are reading about radiation hasn’t changed much in 20 years and outcomes aren’t better at all either…is there a risk of not doing it at this point and doing other things first?
If you do radiation now, what does it preclude you from in the future? Much of the difficulty with some of these approaches is there is a very high selection that occurs when going into these studies. They have many factors to get accepted. No connection with a ventricle, etc. phase 2 study recently published by Duke. In almost any setting where people have a likely ability to enter into the trial they have a better selection to go into the trial. We have a number who are 5 years out that have a GBM and fit into a similar condition. Adding more radition to an area like this increases likelihood to affect sensitive areas of the brain. We want to minimize negative effects. You are likely to do well with standard treatment. We see that you would seem to do better than others. You run a risk of being too aggressive.
If we go on radiation/chemo and immune system gets knocked down, should we be concerned? It comes down to what is the relative risk that will occur to decreasing immune system (somewhat effected with chemo). We know that tumor came on setting when there wasn’t anything wrong with Mark’s immune system. His immune system wasn’t compromised when this came on. We have data on doing nothing and its not very good.
When you should you do chemo/radiation? In all of the data, chemo first then radiation doesn’t have results. Radiation therapy seems to be the most important and shouldn’t be delayed. Pre-temodar, median survivals were only 12 months. Younger folks are shifted toward improvement. No data to support chemo first would be better. Don’t know the answer about using chemo after. Temodar was designed to be delivered at same time.
What about blood barrier problem? Temodar has been shown to effectively get past this barrier. We can give anything, but data presently shows that radiation with temodar and temodar after shows better than radiation alone. Temodar is the first one that ever showed a benefit in GBM.
Proton beam therapy in this case? There is a narrow therapeutic index (how much radiation can you give and effectively kill tumor without killing narrow brain) Proton beam radiation in gBM in this disease ends up killing more normal cells than normal photon process. More dramatic negative effect that occurs with proton vs photon. Proton too much and have significant cognitive decline.
Would you recommend localized treatment down the line (gliasite, etc)? No. Every approach of boosting radiation beyond tolerance haven’t been proven in phase 3 studies…no benefit. What about localized chemo? There was one study done, way it was done, took patients at time of surgery and given wafer or sham. Group with gliadel wafer did a little bit better. Looked at GBM patients and really saw no difference, positive info wasn’t impressive. Good resection in Mark’s case…contrasting areas and surrounding areas had been resected.
should we get another lung xray/scan? It would be worth it.
When switch to kepra? Why are we switching? Get it going now. Good to sit down and talk about how to switch over. Need to write out a schedule. 3 weeks into radiation, we’ll switch…we’ll see him at our next appointment.
Have many patients had trouble with joints? Not most common side fx
* is this considered photon beams, xrays or something else? Xrays/photon
* Is the therapy we’re using 3D conformal radiation therapy or 2D? 3D
* How many beams will be used? 5-6 beams
* Does the dosage decrease as it reaches tumor area and effect the healthy tissue that it has to go through more than the tumor area? No, as the beams converge, you have increased energy deliverd to that spot.
* What are the risks of radiation necrosis of this treatment? 5%
* Shouldn’t we get a pre-radiation MRI to determine most accurate area? Not a bad idea. Surgery on 19th, you could, but it would be about 3 weeks from when . There is post surgical scarring that may look nasty.
* Should there be any MRIs done in between to check if it is working? 8+ weeks seems along time to wait? If someone having a problem…yes. Need total dose to get the benefit.
* If chemo not working, what would we try? There are other standards and trials and try different ones all of the time. Body doesn’t build up the immunity, but the tumor does. If we find something that works, we want to stick with it. Hasn’t been proven, just an idea. Interval of MRIs is every 2 months sometimes 1 month. Round of chemo 6 weeks or 4 weeks.
* Radiosensitizers – chemicals that modify a cell’s response to radiation - None shown to have a benefit
* Radioprotectors – drugs that protect normal cells (promote repair) from damage caused by radiation therapy No one really using these
* Trials currently involved with? One open, one using R115777 with temodar. Dr. Liau, dendritic cell trial, creating vaccine from tumor and patients cells and injecting. Worth trying? No trial currently open. After radiation completed. Similar situations, beware, trial might not be open. Worth doing if available. Doesn’t seem to be a down side. Still being evaluated
* IMRT no different than standard
* Determine treatment based on tumor’s genetic activity EGFR inhibitors supposedly work better on tumors that have EGFRvIII and PTEN proteins. (Dr. Paul Mischel UCLA) Is there a way we can get a genetic analysis of our tumor to predict the tumor’s sensitivity to specific drugs? We will be running these on the tissues!