New Diagnosis (GBM Grade IV)
All – my wife (51) was diagnosed in July 2017 with a GBM grade IV. The tumors were in her frontal lobe, are IDH wildtype and positive for amplification of EGFR sequences. Subsequent testing indicated MGMT Gene Promoter Methylation was not detected. Stacey’s tumor is multifocal. There are other characteristics (like PTEN) that I understand less. I do understand enough to know her tumor is much worse than most.
All – my wife (51) was diagnosed in July 2017 with a GBM grade IV. The tumors were in her frontal lobe, are IDH wildtype and positive for amplification of EGFR sequences. Subsequent testing indicated MGMT Gene Promoter Methylation was not detected. Stacey’s tumor is multifocal. There are other characteristics (like PTEN) that I understand less. I do understand enough to know her tumor is much worse than most.
Surgeon stated the larger was baseball size. Neurosurgeon stated he removed approx. 60%
Stacey had stroke symptoms as she emerged from surgery. Deficits in speech and left arm and leg. She went thru rehab and is much better.
She is receiving treatments at UC Health Aurora ( Anschutz Cancer Center) which is a NCI center ( only one in Colorado)
Early on we sought out second opinions from Barrows in Phoenix, and Dana Farber back East (we did this via correspondence as Stacey was too sick to travel). Both told us the standard of care we were getting in Colorado was their recommendation. Only in the event of recurrence would they have something more to offer.
We currently have her enrolled in the ABT-414 clinical trial thru UC Health . We enrolled prior to the 6 week course of Radiation and Chemo. We are currently evaluating whether to drop from this CT and move to Optune
She has finished her 6 weeks chemo and radiation fine. Some hair loss, fatigue and fogginess. No nausea ( on Zofran). Blood counts on platelets and white cells plummeted the last week, but rebounded to reasonable ( not optimal levels )
She just finished her first adjuvant cycle of Chemo ( TMZ 260 mg) ( 5days on, 23d off) and did fine.
She had an MRI before the cycle started on 11/22. Report from the NO was the scan was good, no issues and no recurrence. Next MRI in January
My initial questions are :
1). Stacey’s platelet count plummeted since the 11/22 test. 59 10*9/L as of 12/13 ( Was 114 on 11/22). I don’t know if this was a result of the Cycle 1 TMZ treatment, or some side effect of the last ABT-414 trial infusion. I’m concerned low numbers might delay the next cycle of TMZ (12/21). Are there any recommendations to increase platelet numbers in the interim? I have questions into the NO including possibility of a transfusion or other options .
2). I have read several papers by Mr Williams and his book. I’m also learning a huge amount from online resources like this blog. Obviously overwhelming especially since I am not in the medical field. I feel like this is my battle and obligation to find options to try as the medical community has little clarity to offer other than stand of care.
a). Is the certainty of results in Optune better than the uncertainty of if she actually receiving ABT414 (double blind study). We’ve been told we cannot do both . I’d appreciate opinions
b). should we be exploring consultations at another Cancer center like MD Anderson, UCSF or Dana Farber now that she’s more able to travel ? I’d like to maximize opportunities before recurrence, but NO wants to stay the course. I haven’t ventured yet into conversation about adding other prescription meds, but need to assembly that case .
Stacey is aware of the situation and cognitively getting better. She gets the danger she’s in but because of surgical and/or tumor damage, she is not able to actively pursue options. Thus, I’m trying to do what I can to care give, stay employed, and find solutions. I am certainly grateful for people like you that I can reach out to for information. This would feel like a lonely battle otherwise.
With Gratitude
Rick
