Completely understand your sister's attitude re the BT support group. There are pros and cons with these types of groups. We found it really useful early on when we were still in shock from the diagnosis and knew absolutely nothing about brain tumours. Talking to a few people in the same or similar circumstances saved us a lot of time on research, as well as providing comfort that there are others in he same boat. Nowadays we only go sporadically to the meetings, depending on how Lynda is feeling, and also just to catch up with some of the nice people we have met in the group.
About p53, we have read up a bit about this gene, because Lynda's type of brain tumour commonly has this gene mutated. Don't get me started on tumour testing however, as this is a bit of a sore point. NZ pathology labs do not routinely test for p53 mutation in brain tumour pathology. In fact the only genetic testing they do is the 1p/19q deletion for oligodenrogliomas. They don't do any genetic testing for GBMs at all!
One of the reasons for this is because they don't guide treatment based on genetic testing, therefore it is deemed unnecessary. The other reason is that they don't have the money, equipment or time to do such testing.
Lynda is taking supplements which are supposed to help upregulate p53 gene function, such as genistein (a soy isoflavone).
Hope your sister is doing well.
h/o Lynda, 41, dx GBM IV (left posterior frontal lobe) in Mar 2006
proud p/o Cassandra (13), Nathan (11)
9 Mar 2006 resection
14 Mar 2006 pathology confirmed giant cell glioblastoma
18 Apr - 30 May 2006 30 fractions radiation plus daily Temodal @ 75mg/m2
26 Jun 2006 1st cycle adjuvant Temodal on 5/23 schedule @ 150mg/m2
20 Jul 2006 first MRI after radiotherapy, result inconclusive
24 Jul 2006 2nd cycle adjuvant Temodal on 5/23 schedule @ 200mg/m2
21 Aug 2006 2 week delay in treatment due to low platelet count
4 Sep 2006 3rd cycle of Temodal on 5/23 schedule @ 150mg/m2
2 Oct 2006 4th cycle of Temodal on 5/23 schedule @ 150mg/m2
30 Oct 2006 5th cycle of Temodal on 5/23 schedule @ 150mg/m2