GBMsibling-Thank you for a great advice!Hope Lodge sounds like a great possibility for me if I'll find a treatment available for me in other state than California....thank you once again...
I'm glad we could direct you away from spending time and money on Burzynski. I don't have very many nice things to say about that man, so I will spare you the diatribe.
I don't have much to add at this point (you guys beat me to it!) but I'll second GBMSibling's recommendation for the Respectful Insolence blog. Orac does good work.
31-year-old agnostic survivor of low-grade oligo-astrocytoma, diagnosed 6/17/11.
I maintain the Ramblings of a Traitorous Mind
blog as a chronicle of my battle with cancer and my related reflections.
My friends are using Fundrazr app to help me collect the money for the treatment,but thank you for your reply to my post.
I hope your little child is doing well. Best wishes for you!
I am sorry to hear about your brain tumor, but happy to hear you are looking into reputable brain tumor centers. UCSF (in CA), Duke (in NC), Sloan Kettering (in NY), and MD Anderson (in TX), all have excellent brain tumor programs. Although your surgeons said your tumor was inoperable, that may not be entirely correct. The ability to surgically resect without causing permanent disability is directly related to the ability of the neurosurgeon. No neurosurgeon is capable of completely resecting a grade 2 astrocytoma because of the diffuse, infiltrative nature of these tumors. Nonetheless, even an incomplete or partial resection will result in cytoreduction (a decrease in the size of the tumor and number of tumor cells in the brain) and is clearly associated with increased median overall survival of patients with grade 2 astrocytomas. I would begin by FIRST looking for a neurosurgeon who has extensive experience resecting tumors in the same location as yours. I believe you said your tumor was located in left frontal lobe. If correct and you are right handed, then this area of your brain controls language processing. Neurosurgeons at UCSF (especially Drs. Sanai and Berger) have developed sophisticated intraoperative mapping procedures that allow for more extensive resection of astrocytomas in and around language centers. SECOND - there is no convincing evidence that up front radiation therapy of a grade 2 astrocytoma improves survival. There is, however, evidence that early radiation treatment results in cognitive problems. Best to leave the radiation until later and only if and when the grade 2 tumor progresses to a higher grade (3 or 4). THIRD - at least 50% to as many as 80% of grade 2 astrocytomas carry a mutation in the isocitrate dehydrogenase 1 gene (IDH1) that is clearly associated with a much more favorable prognosis. Your tumor samples should be tested for the IDH1 mutant. If you test positive for the IDH1 mutation, then chemotherapy is probably NOT a good option for you AT THIS TIME. The chemotherapy drug that is used for treating astrocytomas is temozolomide (or temodar or TMZ). TMZ is clearly associated with secondary cancers such as treatment-related leukemias and lymphomas that usually appear 3 to 5 years after TMZ treatment, but can appear as early as 6 months after TMZ. TMZ is also a MUTAGEN that has been associated with transformation to a higher grade (in other words it can convert a low grade astrocytoma to a higher grade astrocytoma). Given that the median overall survival for grade 2 astrocytoma is about 5 years while doing nothing (i.e. watch and wait) and longer for those that are IDH1 mutants, I would also recommend holding off on chemotherapy (certainly TMZ) at this time. Hope this helps. LMG