Title : Quite urgently seeking Suggestions
link : Quite urgently seeking Suggestions
Quite urgently seeking Suggestions
Hi Everyone,
I have been a long-time reader of this amazing blog that Stephen created and regularly check it for any posts about new treatments or therapies. I am really happy to see that Stephen still occasionally posts new studies and answers some questions.
I am quite urgently seeking advice on next steps in relation to treatment for my partner (of 18 years), who is a very physically active person and despite everything that has occurred, remains very positive. She is 40 years old.
Background:
We are based in Australia and she was diagnosed in December 2011 (2 days before Christmas!) with a low grade Astrocytoma in the left Temporal Lobe.
2012 (February): She underwent craniotomy that resulted in a subtotal resection – it was an awake craniotomy owing to the tumour’s location near important speech areas.
Histopathology of the sample was unfortunately not very detailed and only confirmed a Low Grade Astrocytoma with a very low KI67 of < 1%
2015 (February): The lesion increased in size over the years (pretty much doubled) to 55 x 34 x 49mm – so a second surgery was performed that again resulted in subtotal resection.
Histopathology results showed – Low Grade Astrocytoma, IDH1 Mutated.
A retrospective FoundationOne profile was obtained on this sample in 2017 and only showed 2 mutations: IDH1 (R132H) mutated and TP53 (R175H).
2017 (September): The tumour continued to grow and extended into the frontotemporal region and insula. Another Surgery was conducted in two sessions due to expected length, and a large portion of tumour from the temporal and frontotemporal regions was removed, as well as a small portion from the insula.
Histopathology results showed – IDH1, 1p/19q co-deletion, ATRX lost, TP53 Mutated, KI67 of 2%
A Caris profile was also obtained which also showed that the tumour was not MGMT methylated – although after asking Stephen about this at the time, he said that MGMT was a bit of a hit and miss due to the heterogeneity found in tumours – so we remained hopeful that MGMT may still be methylated in most of the tumour given it is typical of low grade gliomas.
* The Caris report conflicted with the histopathology and showed ATRX intact.
2018 (January): Managed to get Bayer to sponsor my partner to take part in their IDH1 Inhibitor trial (BAY1436032), went to L.A and got knocked down at the last minute due to not completely satisfying their RANO requirements!
(September) Sought out the top neurooncologist + radio oncologist team in Sydney and she started IMRT then moved on to a round of TMZ which finished in early 2019.
2019 : MRI’s showed decent shrinkage in the tumour volume for the first 6 months then stable.
2020 (January) : MRI showed slight enhancement in the original temporal lobe resection cavity + strangely an enhancing nodule on the right ventricle. These were determined by the neuro and radio oncologists to be late radiation treatment effect and thought that they would resolve.
(Late February) MRI showed the enhancing nodule in right ventricle shrinking a bit, but enhancing area in temporal lobe cavity growing a bit. Still determined to be late treatment effect.
(June) : MRI – ALL HELL HAS BROKEN LOOSE. There are now another 3 large enhancing lesions – one in the right Frontal lobe, with a small one behind it, one in the Left ventricle (looks like a cherry sitting on the ventricle wall) and a much larger enhancement of in the original temporal resection cavity.
Needle Biopsy – a needle biopsy has just (yesterday) been performed on the right frontal lesion to get a better understanding of the makeup of the new lesions. We are currently awaiting the results and will also hopefully be getting a Caris or FoundationOne genetic testing on the sample.
The surgeon mentioned that he could already see an increase in size since her last last (less that 1 week prior). So this is a very fast growing tumour/s.
Proposed Initial Treatment
Her neuro-oncologist and radio-oncologist have suggested that she begin (as soon as possible) with CCNU + Procarbazine – and possibly Avastin for the swelling.
Current Medications (all anti-epileptics):
- Epilim (Sodium valproate)
- Fycompa (Perampanel)
- Lamictal (Lamotrigine)
- Briviact (Brivaracetam)
- Frisium (Clobazam)
Suggestions
I would be extremely grateful if anyone can:
- provide their thoughts on the proposed treatment
- make any other treatment suggestions
- suggest anything that could possibly increase the effectiveness of the
suggested treatment
suggested treatment
- point out any pitfalls or things to be aware/weary of whilst on the treatment
- suggest any promising potential trials or treatments anywhere in the world
- suggest any cokctails that they have used with this treatment that have
resulted in better outcomes + better tolerability
resulted in better outcomes + better tolerability
The rapid change from a fairly stable low grade astrocytoma really did catch us (and her doctors) off-guard and I would be very appreciative of any advice or suggestions that anyone could kindly offer.
Thanks to you all.
Ryan.
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