Thursday, 21 September 2017

Update: methadone

Hi,
my dad has just had his fourth MRI since being on methadone and it was very positive again. This time the tumor is stable but as the three MRIs before this one showed shrinkage, his tumor is now smaller than it was in the beginning. The latest MRI also showed that the edeme is decreasing in size. So we're happy :)
My dad was diagnosed in December 2015 with an inoperable glioblastoma (corpus callosum) and all doctors (neurosurgeon, oncologist, GP) are very pleased with the results. He's not using methadone alone but we've notived an improvement since he started taking it. He also takes Temodar, some other supplements and uses Optune TTF. So it might be the combination that helps him. I'll keep you updated on our experiences with methadone!

Sunday, 17 September 2017

Trivalent CAR T-cells

This study, called Trivalent CAR T-cells Overcome Interpatient Antigenic Variability in Glioblastoma, just appeared as an accepted manuscript in Neuro-Oncology.  See abstract here.

This was a preclinical study tested in mice, but is an exciting development, as this CAR T-cell cocktail approach is more likely to be effective than CAR T-cells targeted to a single antigen.

I'll upload the full study to the Library (Immunology and Immunotherapy folder, in a new CAR T-cell subfolder).

New study from the Costello lab (UCSF) on IDH1 mutant low grade glioma

The study is called Clonal expansion and epigenetic reprogramming following deletion or amplification of mutant IDH1.  View abstract here.  I've also uploaded this to the Brain Tumor Library, Pathology folder, IDH-mutant glioma subfolder.  This data was presented at the SNO conference in Phoenix last year.  I'll be following up with comments, and perhaps an Astrocytoma Options update on this.

Tuesday, 12 September 2017

FIG-ROS1 Chromosomal Fusion Significance? Actionable?

My husband's genetic testing came back with a .51 Tumor Mutational Burden. He has a 66.40% TP53 Allelic Fraction and 45.76% PTEN. His NO said these are common in many cancers and said neither are very actionable.

He was intrigued by the FIG-ROS1 as it usually shows up in small cell lung cancer and with recurrence might be eligible for a bucket trial with entrectinib.

He also has CDKN2A and CDKN2B Copy Loss.

I am just starting to look into what all this means. I have not looked into clinical trials much but am pursuing possibly getting a PD1 Inhibitor although once again I am told he needs recurrence.

He is 7 months out, stopped adjuvant TMZ after 2 rounds, unmethylated, IDH Wildtype, doing Optune, supplements and cannabis oil and overall doing very very well. Thanks.

Suggestions for a Cocktail that does not include TMZ

Hello, my husband has stopped taking TMZ after 2 adjuvant rounds after having debilitating fatigue, dizziness and nausea. He is doing much much better. He is unmethylated and IDH Wildtype. When he was taking the TMZ he did take disulfiram and copper. He is also taking metformin and celecoxib. I know some of these drugs are meant to help the TMZ do what they are supposed to do. Does anyone have suggestions on what off-label drugs he should take if not taking TMZ?

He is taking the standard supplements as well as cannabis oil and wearing the Optune. Thanks.

Monday, 11 September 2017

Treatment Options for Glioblastoma and Other Gliomas - 2017 edition

This is the in-depth summary of treatment options that Ben Williams began years ago, and which I have taken over lately.  Download the 2017 update over at virtualtrials.com  , or click here for PDF download.   This can be discussed on Al Musella's BrainTumorTreatments yahoo group .  (Of course comments welcome here as well).

Sunday, 10 September 2017

Partner due to have first vaccine as part of Duke Elevate trial on Wednesday.  He went through SOC and had 1st five day Temodar.  Duke said MRI two weeks after final radiation showed pseudo progression with swelling.  My question is does swelling eventually go down without steroids?  Symptoms have gotten worse in last week.  Concerned steroids might not fit with immunotherapy.  Haven't talked to doctor yet.

The Blood-brain barrier (BBB) and glioblastoma, a review

Another review appearing online as an accepted manuscript for Neuro-Oncology, on a tremendously important topic.  It's called "Is the blood-brain barrier really disrupted in all glioblastomas? – A critical assessment of existing clinical data" and shares my view:

"This review provides an overview of the clinical literature to support a central hypothesis: that all GBM patients have tumor regions with an intact BBB, and cure for GBM will only be possible if these regions of tumor are adequately treated"

Abstract here, and again I can email the full study if anyone would like a copy.

Key quotes below:

Combined with the surgical experience, these data support our central contention that all GBM have a clinically significant tumor burden ‘protected’ by an intact BBB.

Accepting the importance of drug distribution across an intact BBB into brain is a critical first step in developing effective therapies for GBM and must be a key consideration in any clinical trial design for newly diagnosed or recurrent GBM.


The impact of complete resection most important for IDH-mut astrocytoma

There is an important new study, just published as an early preliminary manuscript online in Neuro-Oncology, called "The impact of surgery in molecularly defined low-grade glioma: an
integrated clinical, radiological and molecular analysis".  This was a large retrospective study including 228 adult low-grade glioma patients undergoing resection since 2003.  The tumors were classed as A) IDH-mutant oligodendroglioma (with complete 1p/19q codeletion),  B) IDH-mutant astrocytoma (no 1p/19q codeletion) and C) IDH wild-type (GBM-like).

The most important finding of this study was that complete resection (0 residual tumor), was most critical in the IDH-mutant astrocytoma group, as seen in the following figures.  In the first figure shown below, even a small amount of residual tumor post-resection negatively affected survival for IDH-mutant low grade astrocytoma.


The next figure also shows outcomes for IDH-mutant low grade astrocytoma, by various amounts of residual tumor post-resection.  (My snip only shows the first 3 images in the series). 


The next figure shows that complete resection also improves survival in low grade IDH-mutant oligodendroglioma, but the difference in survival between 0 residual tumor and small amounts of residual tumor is not a large as for the astrocytoma group as we saw in the first figure.


The abstract is available here.  I can email the full study if anyone wants it.



GBM possible recurrence help

Hi all, my brother diagnosed with gbm last year april 2016 and got his surgery, radiation and temodal immediately after that. This year around feb 2017 during his 3months mri checkup the doctor noted a 0.75cm mass suspected as gbm. Bc its too small the doctor decided to wait for next mri to see how it goes. At may 2017 my bro undergo another mri and found out it was clear! But at next mri aug 2017 they found the 'dissapeared' mass to have grown to 1.4cm. The doctor have decided that it must be gbm recurrence, and he said that the missing mass in between these mri must be the gbm 'hiding'. Is it really possible gbm to be 'missed' during mri?

And we also really confused to the best solution in handling this 'possible gbm recurrence'. We have asked diff doctors including neurosurgeons and oncologists. Doctor A said we should go with gamma knife, Doctor B said we should go with Surgery instead cause Gamma knife wont guaranteed as clear as Surgery. Doctor C said Surgery is dangerous cause the mass is in a critical location that can 'paralyzed', and Gamma knife not effective so we should go with Cyberknife instead. Anyone who have experienced gamma or cyber which one is actually more effective for gbm? And for gamma knife do the patient need to undergo chemotherapy after the gamma knife operation like using Avastin? Or they can only wait for the gamma to works? We really appreacite any recommendations or sharing of experience. Thank you!

Regards,
Milee

Thursday, 7 September 2017

Trending...big time -- Repurposing Zika against GBM

In case you haven't seen this news light up the GBM community -- http://blogs.sciencemag.org/pipeline/archives/2017/09/06/repurposing-zika