This afternoon there was an email from John's Hopkins with their recommendations.
I wanted to pass on our recommendations. We reviewed Matthew's medical summary, pathology slides and MRI scans. In general, we are in agreement with the proposed plan as put in place by Drs. Yaish and Bruggers.
Dr. Burger (our neuropathologist) gave the tumor a slightly different diagnosis than the one from Primary Children's but this may, in part be related to having only a portion of the specimen to review at Hopkins as opposed to the entire specimen available to the neuropathologist at Primary Children's. Dr. Burger call this an oligodendroglioma type lesion which is a form of a glial tumor. Pilomyxoid astroctyoma is also a form of a glial tumor.
From a treatment perspective, I'm not sure it makes much difference. I still think it's reasonable to start with carboplatin and if that's working, stick with it. If it doesn't seem to be as effective as desired, I talked with Dr. Yaish about other choices (such as temozolomide) that might be substituted. Thanks for allowing us to reflect on Matthew's case. Please let me know if you have additional questions.
So, now I've learned quite a bit about Matt's tumor type and I need to start all over! I've been reading this article on oligodendroglioma. It actually sounds more like Matt's presenting symptoms, age range, and shows more of a tendency to do things that Matt's tumor did (like bleed and seed into the spine). I did post one more question to the doctors at John's Hopkins about the 'grade' of the tumor. The grade will make a significant difference in terms of his prognosis and also how responsive the tumor is to treatment. I really still do not want to ask about prognosis. To me, my strong boy has a 100% chance of surviving this nightmare. However, I believe it is extremely important to know exactly what we are dealing with so we can fight it effectively. I think I will talk with oncology about the possibility of adding temozolomide to his current chemotherapy. He was originally going to be on this drug, and it seems to be very effective against this new type of tumor. The side effects sound awful, though... It's hard to know what to push for.
Lastly, I can't decide whether we should try to get a 3rd opinion. The difference in diagnoses concerns me, even if the treatment might be similar.
Well, I suppose if I didn't have enough to stew about, I do now!