Questions on my mom's drug cocktail(GBM Patient)

Hi folks/Stephen,

My mom was diagnosed with Glioblastoma(GBM) in September 2017. Following is the details of her GBM:

Her last scan was 6 months back and showed no growth, choline elevation or perfusion. We're yet to get another scan done in a few days from now.

She has been on the following supplements for almost the past three years. She started Chloroquine and Valganciclovir a year back. I had the following questions to ask, would be great if you can help me with the answers:

1. Is it safe to take these supplements for such a long duration? Are there any supplements that you would suggest that need to be stopped/paused? My concern is specifically with supplements like Valgancyclovir and Chloroquine, given the fact that they are not naturopathic/nutritional supplements?

2. Is there any supplement that you would suggest adding to my mom's drug cocktail? I've shared details of my mom's biopsy/genetic mutation below my mom's supplement list.

3. Are there any doctors/integrative oncologists that you would suggest consulting? I have been consulting Patrice Surley so far for my mom's treatment beyond the standard of care.

Supplements

Supplement	Cap count per day
Boswellia Serrata 500 mg	8
Keppra 500 mg	2
Chloroquine Phosphate 250 mg	1
Valganciclovir 450 mg	1
Curcumin + Piperine 1 g	4
Longvida 400 mg	2
Metformin 500 mg	3
Quercetin 865 mg	4
Resveratrol 200 mg	2
Bromelain 500 mg	6
Reishi 1g	2
Artemisia 1 g	2
Ashwagandha 500 mg	1
Selenium 200 mcg	1
Vitamin A + D + K2 - 5000 IU	1
Molybdenum Glycinate 1g	1
Celebrex 200 mg	2
Green tea extract 500 mg 40% EGCG	2
Juice from 5g of Ginger	1
Garlic 2 cloves	3

Details of the genetic mutation of my mom's tumour

Following are the details from her biopsy

IDH1 and IDH2: Not detected
CHR 1p and CHR 19q: Negative for CHR 1p and CHR 19q codeletion
Methylation: Detected
Ki67 labelling index is 15-20%

Following is her FoundationOne report:

Genomic Alterations Identified
EGFR A289V – subclonal, amplification, EGFRvIII
PTEN I67T
CDKN2A/B loss
TERT promoter -124C>T

Additional Findings
Microsatellite status MS-Stable
Tumor Mutational Burden TMB-Low; 3 Muts/Mb

Additional Disease-relevant Genes with No Reportable Alterations Identified†
IDH1(-ve)
PDGFRA

Following is the diet and supplements that my mom is taking:

Diet: Ketogenic Diet/Low Carb high-fat diet

I look forward to hearing from you all!

Continue Valcyte or not...

Hi All,
My brother has been taking Valcyte for 22 months. Today after a great MRI result his oncologist has suggested stopping Valcyte.
What are your thoughts?
Best wishes, Lisa

Seattle Science Foundation Lecture Link Available

Hi -

Finally got the link to the lecture from the event at the Seattle Science Foundation: https://www.youtube.com/watch?v=tEWU6TDoR9Y&list=PLyptnEaqO5i5pTEYxgouH61Twgp3I5vMt&index=1

Dr. Soderberg's presentation was not published per her request.  Apparently it's unpublished data.  To summarize what I got from it, 100% of GBM tumors test positive for CMV.  In Sweden 150 +/- GBM patients were given valcyte.  30 were recurrent, the rest newly diagnosed.  All saw benefit.  It's cheapest (for the US anyway) at Mark's Marine Pharmacy in CA (generic is $800 per month).


Thanks.
Annie

Valcyte/ Valganciclovir

Hi,

Has anyone had success using Valcyte? I read a study suggesting that the CMV virus might have a role to play in GBM. Also the Swedish VIGaS study showed some benefit to adding Valcyte to standard treatment. Can someone please share their opinion/ experience with me?
Many thanks
Noha

Valganciclovir and bevacizumab for recurrent glioblastoma: A single-institution experience

http://www.ncbi.nlm.nih.gov/pubmed/26893852

I will upload this to the Library.  Keep in mind this was only 13 patients.

Valcyte and chemo

I have a question for those who took a chance and tried Valcyte for the cmv virus.  Did toy start during chemo? What were your symptoms ?

Valcyte

Lisa wrote:

Also, what do you think of Valcyte? My brother has been taking it for nearly 12 mths. Nothing came up when I searched on this forum.

This is worth starting a new thread about, since we haven't discussed in on the blog yet.  

Clinical studies on this drug for glioblastoma have generated a great deal of controversy.  For a primer on this controversy see the Valcyte section on the Repurposed Drugs page at Astrocytoma Options.

The original, small, prospective, "hypothesis generating"  clinical trial showed no improvement in overall survival or progression-free survival for patients randomized to receive Valcyte.  The study's primary endpoint was tumor volume at 3 and 6 months post-surgery, so patients in the placebo arm were allowed to cross over to Valcyte after six months, which could have masked any overall survival benefit of Valcyte compared to placebo, but there was also no improvement of PFS.

Then a retrospective study, including patients in this trial plus another group treated with Valcyte on compassionate use, was published in the New England Journal of Medicine, and this is when the real controversy began.  This study is affected by a form of bias called "immortal time bias", which commentators were quick to point out.  Still, other commentators such as Charles Cobbs claims there was an unexpected number of longer-term survivors.

Multiple preclinical studies have demonstrated a role of CMV in glioblastoma progession, providing at least a rationale for the use of Valcyte.   I simply don't know what to think about Valcyte.  It's remarkable how a prospective study could show no improvement in median PFS, while further retrospective study could claim large benefits.  That said, I fully understand why patients would want to try this drug, on the chance that it could truly be helpful.