Saturday, September 01, 2007

And just when I learned to pronounce (and spell!) Pilomyxoid Astrocytoma

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!



Anonymous said...

wow, that's alot to think about! You will have no problems with tongue twisters now - those are LONG complicated words!!!
As for the third opinion, and what to do next...pray, pray, pray. (And we'll all keep praying for your family too!)

Michelle said...

Hey Alli!

It is Melanie's sister Michelle. I am so happy you got the second opinion you wanted! It makes me want to do the same even more now, especially since they were different! I would love to know how you started the process if you get a free second...which I am sure is pretty difficult right now. My email address is We work with Dr. Yaish as well. He is our primary doctor.

We also know how it feels to get really aquainted with one type of disease and then have it change on you! You sound like you have things very under control! He is lucky to have you as parents! Matthew and your family are constantly in our prayers right next to Mason! We also put at least one coin into the PCMC fountain for him each day!

Glad things are going okay considering the situation! Take care!


Karen and Lew said...

We agree that Matt has 100% chance of a full recovery. We pray for you and your family everyday. If you think you should get a 3rd opinion, get one!

Jessie said...

Wow, so you are working with Carol Bruggers (at least she's on the team somewhere). That's good. She's super smart and I always appreciated her judgment when I worked with her at the research compliance office.

Anyway, that's interesting stuff. I understand not wanting to hear a prognosis, but needing to deal with one at the same time. It seems the hardest things in life come with opposing positions to struggle with. Why!

We love you!