follow up with Dr. Martin

Dr. Martin called us at home last night to answer some of our outstanding questions, since we weren't able to meet with him face to face last week....

How many GBMs do you deal with a year? 20-40

When did it start growing? It was growing the whole time, every (UCLA) scan showed some minor change.
What part of tumor was growing? Area of abnormality didn't change much from Oct-Dec, the center changed a bit. Percentage? Looks like about 50% of the tumor was necrotic.

Still have trouble sequencing and getting words out sometimes'is this permanent, evidence that there is still something there? It's not really worse than before surgery, may improve with time, hard to tell at this point.

Can I resume driving? yes, shouldn't be a problem

When can I resume contact sports (i.e. hockey)? Will I ever be able to play again? Would wait probably at least 9 months and let skull heal fully. May not be the best sport and may want to choose something with less risk. Only had one person go back to playing contact sports, he was a professional hockey player and needed it for a living.

How about a running sport (i.e. ultimate Frisbee)? This would be fine. He can try it now, if he gets a headache, stop, shouldn't damage anything if you run.

When can I resume weight lifting? Shouldn't be a problem. Try it out and see how you feel.

What is considered our date of diagnosis? 1st scan that showed abnormality then surgery confirmed malignant tumor.

Is there a period of time that you typically see regrowth? Many factors involved.

Do you have other patients in our age range that are still surviving with GBM? Yes, I have given patients names to Jennifer to pass on to us.

Do you have statistics about what percentage of people that GBM resections have to come back and do something again? 70%

If it comes back, are there other procedures that you use? Generally the same sort of surgery, depends on what it looks like and where it is.

Since we're now having radiation, would a form of brachtherapy be relavant? We don't really do this now. It has been used (back when training), but is used less now than it was 20 years ago (kind of like a fad ) there are very few people doing this now, stereotactic surgery same results and used more now.

Do you have any internal chemo procedures that you perform? We haven't been doing that.

Have you all heard about the Extreme Drug Resistance Assay (EDR Assay)? There are about 50 of these types of things around the country that claim the same thing, most remain unproven, none of them are a standard at this point.

If one of your children had a GBM resection, what treatment(s) would you consider for them? Definitely Dendritic cell immunotherapy (Dr. Liau)

Do you know of any former collegues that are doing trials for upfront GBM? UCSF, Mitchel Berger (chief of nureosurgery)

Can you look at our pre-radiation MRI and tell us if there's anything to be concerned about? Didn't see anything of concern at this point.

Is there less space for swelling,etc? now has more room, because tumor is gone