Title : My daughters GBM
link : My daughters GBM
My daughters GBM
Hi StephenThank you for adding me to the authors list, the information available to all and from all is absolutely invaluable to everyone having to deal with this disease under the current medical regime.
My daughter was diagnosed while living in London in 2016.
She was 26 at the time and 22 weeks pregnant.
It was a large Bi frontal tumor, IDH1 mutation and Methylated 25%.
They completed a partial resection/debulking at the Royal London Hospital, but did not remove the majority of the tumor due to safety risks as they seen this at time.
After a month of recovery, we brought her home to Australia and made arrangements for her to undergo further surgery with a specialist Neurosurgeon in Sydney.
This was a lot more successful with 99% of remaining tumor removed.
Radiation and chemo had to be delayed for almost 2 months until her unborn child had developed sufficiently to be delivered by C section.
This also went well, and she started radiation and standard chemo (Temodar) in early December 2016.
She followed a few alternate treatments from early January 2017 including a vaccine clinical trial in Buffalo NY, followed by Hypothermia treatments in Germany before returning home to Australia in May 2017.
MRI's showed little if any progression up until August, and anything her surgeon could see he believed was residual from the radiation.
Her last MRI at that time was August 7th, which was supposedly still good, and by September 20 she was admitted to hospital with migraines and a temperature.
The following MRI and CT scan showed there was significant disease progression and oedema.
In October 17 i returned to the United States looking for a clinical trial that she may be eligible for.
It became more of a risk for her to undertake a long haul flight, so at the advice of every medical professional was that she start a maintenance treatment program of PCV (without Vincristine) and Avastin.
During this period, like many of you readers, we found the Ben William's story, and as we were not given any options that presented any hope, we have embarked on the same voyage as the followers on this blog.
She had her first standard Avastin treatment on November 14th followed by standard dose of Lomustine on November 20.
Her platelets and neutrophils went into free fall, requiring several platelet transfusions, and was unable to have Lomustine again (50% dose) for another 9 weeks, she continued on avastin at 3 weekly intervals.
As of January 15, i managed to persuade her oncologist to prescribe the Low dose avasin and i introduced the ACE inhibitor Trandolapril.
She is due again this Monday for the lower dose Lumustine.
The other prescription drugs that i have introduced since November are as follows;
20/11/17 Metformin 500mg twice daily
12/12/17 Tamoxifen 160mg daily split x 3 time a day
15/12/17 Low dose Naltrexone 4.5mg at night
15/12/17 Melatonin 20mg at night
15/12/17 Trandolapril 4mg morning
9/1/18 Celebrex 200mg daily (waited for her stop Dex)
17/1/18 Accutane 140mg daily split x 3 times a day 2 weeks on and 1 week off
19/1/18 Verapamil 480mg daily split morning and afternoon week of chemo only
Introducing Antabuse 400mg daily this Thursday prior to chemo next Monday.
We have been doing MRI's monthly since December 5 (at our own expense)
The last 3 MRI's have shown it as stable, no further disease progression.
My real concern presently is she has lost the majority of mobility in her left hand side, her left shoulder is drooping and her difficulty in walking is getting worse.
When the tumor reoccurred it came back in the ventricles, but she is mentally sharp without any headache or nausea. Has anybody else experienced the same symptom?
Can you tell me how people best target Disulfiram around chemo time (dosages) rather than daily dosages.
Her next MRI is on Monday 5th March
Kind Regards
Martin
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