Wednesday 7 September 2016
Hi there everyone. My husband was dx in Jan 2016 with Astrocytoma grade 2 after biopsy. Seizures were the presenting symptom.The tumor has a diffuse gliomatosis cerebri growth pattern, in at least 3 lobes. He just turned 79, but is super healthy and very active..(except for a bad back). He is a super bright still practicing professional. He opted to try Temodar alone, 5-23-cycle, no radiation bc of cognitive side effects. He has scans every 2 months and NO says all have been stable with possible shrinkage in an area. The MRI on 8/1/16 showed stable disease as well, BUT they also did a Spectroscopy which showed a long TE sequence with Cho/Cr ratio 2.25:1, and a short TE portion with Cho/Cr ratio at 1.96:1. I've read that indicates higher grade tumor, growth etc. The NO said it is not reliable test in grade 2, bc the tumor tissue in grade 2's and normal tissue is a lot alike. This doesn't make sense to me. Also, this spike was not present on study the last time spectroscopy was done, which was on 02/24/16. Ive called Duke for another opinion and am waiting to hear back. We live near Orlando, and have been going to Mayo in Jacksonville, and have been happy, but our NO is leaving Mayo. He has been feeling very tired and awful last 3-4 days. I don't know if I am being paranoid, but I worry what if it is starting to grow or transform...So, all that to ask...does anyone have experience with Choline / Creatine Ratio? Thank you!! Angela
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One NO told us that they don't do MRS at their institution because they "don't believe in it". We do have MRS done elsewhere, but it's a research scan. It looks like they still don't have enough experience to tell for sure what the results mean.
ReplyDeleteDid they do genetic testing of the tumor tissue? Especially the IDH1 status is important for grade 2 astrocytomas.
Marian, Thanks for your response. I heard back from Duke, and they said they would wait for Imaging to show growth, and not rely on spectroscopy. Yes, we did genetic testing. IDH1 was wild type, (which really worries me) but mgmt was methylated, so they started the temodar immediately. We also sent specimen to Foundation One, and he had 4 alterations. EFGR, PTEN, CDKN2A/B loss, TERT promoter -124C>T. Our old NO said if it starts growing radiation would be his first choice, then a checkpoint inhibitor, although he says that may not work.
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