Blogging in B Minor

Some good information should be available on Monday from UCSF.  For those of you that are not aware, The University of California, San Francisco has a Brain Tumor Center and it is one of the best in the country – certainly on par with Duke, Mass General, UCLA and others. Dr. Mitchel Berger, the head of the Department of Neurosurgery is performing a film review of my most recent set of MRIs which is something I have done on a number of occassions.  You may recall that he along with Dr. Peter Black at Mass General both agreed that I should have surgery back last June which was contrary to the opinion I was given here at the brain tumor center.  I have relied upon Dr. Berger ever sense from a radiological perspective to interpret my scans to ensure I have this second checkpoint.

In addition, I have been on the phone with the UCSF Department of Neuro-Oncology.  I am seeking another opinion with regard to my go-forward chemotherapy strategy.  For this case review, I have sent them just about everything.  MRI films, pathology, operative reports, 1p19q gene deletion test results, recent lab work, recent dictations from my Neuro-Oncology appointments, etc.  This review will allow me to have another opinion now that I have finished the 6 months of pulse therapy using Temodar which is the standard of care.  After 6 months, there isn’t a lot of information in terms of the right course to take – do you stay on chemo?  How long?  The same type?  Lots of questions.  Some with brain tumors may not know that in many cases you can contact brain tumor centers and facilitate these types of reviews with some footwork and organization.  It is WELL worth the effort and logistical challenges. 

So, on Monday or Tuesday of next week I should have opinions / impressions related to my scans (growth, stable, etc.) – and the verdict here has been stable all along and back in October of last year Dr. Berger concurred that all was quite stable.  I will also have the complete case review from a Neuro-Oncology perspective which will provide me with great information moving forward.

I was able to get some information through some connections from Dr. Jonathan Finlay who is at UCLA.  His response, to me, was shocking – he said the standard is to stop at 1 year which is consistent with my understanding but that he personally has his pediatric and adult patients continue INDEFINITELY as long as they have residual tumor present on MRI.  Wow.  Long term risks such as leukemia come into play with these drugs but I’m sure he views the long terms as the lesser of two evils so-to-speak, particularly if you’re dealing with grade 4 tumors.  So, we’ll see what UCSF says.

More to come next week.

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