We had quite a long Dr visit yesterday with Dr Nayak at Dana-Farber Cancer Institute. They have a lot more experience here than at Mayo's with these grade 3 meningioma's, but even so my case is extremely unusual and they have not seen them spread in this manner. We came away reminded that there is no known cure or solution from a medical standpoint. There will be no possible conclusion other than a miracle should the tumor be held at bay.
They agree that radiation is more effective than chemotherapy and has the best chances of slowing the tumor growth. Initially she suggested I have more surgery to remove a piece of the tumor from the posterior fossa (lower back of brain) before starting radiation. As we've discussed this more with all doctors, it seems the risk of delaying the spinal radiation is worse than the risk of swelling in the brain she is concerned about.
The main difference in her plan is she suggests not doing the whole brain radiation at this time. She would suggest doing radiation in isolated areas as tumors arise. It's hard to know what will be the best route. We've heard enough of the side effects of whole brain radiation to know I will probably fight serious fatigue symptoms and suffer thinking and memory loss. But at the same time dragging radiation out into multiple treatment courses will be draining on us as well. Not knowing exactly how the timelines will end up playing out, it's hard to know which course will be best.
We were hoping to learn more about various chemotherapy options and maybe learn that we should be doing something sooner or in conjunction with radiation. They have a fair amount of experience with chemo but the results have not been that good. Dr Nayak is going to do some genetic testing of my tumor from what mayo removed and that will help her have a better idea of what chemo regimen to use. Based on what she sees of my tumor behavior, she is not in favor of Avastin. She would lean towards sunitinib at this point. We shared the results from the California lab with her but she does not consider it to be relevant really. The drug they recommended she said was old school, tried years ago, and never worked against meningioma's.
So the main decision now is just to finalize on the brain radiation course. The chemo plan will settle out over time after her testing. There doesn't really appear to be any options we should be trying now.
Thanks again for your love and prayers for us,
Derek & Leann