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
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!
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
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!
Hi Sahil, I'm glad to hear your mom's scan is showing no progression at the nearly three year mark!
ReplyDeleteI'm not a doctor and have no personal experience with valganciclovir, but a recently published retrospective study of using this drug for GBM patients stated
"Valganciclovir was given at the standard recommended dose: 900 mg twice daily for 3 weeks followed by 900 mg daily until disease progression (n=12 cases) or palliative status. Severe signs of intolerance were not observed."
On the Toxicities page on this blog, I've quoted a study that concluded “The risk of developing toxic retinal chloroquine damage seems to be small or absent even in long term treatment, providing the dose is kept low, not higher than 0.25 g [250 mg chloroquine phosphate] daily for 10 months annually, and the patient is under 50 years old and does not suffer from any other illness which might affect the retina. The total annual dose is thus 70-75 g. Regular ophthalmological checks should then not be essential. In elderly patients, over 50-60, in whom there is the problem of differentiating senile maculopathy from chloroquine-induced maculopathy, regular ophthalmological check-ups are advised.”
If I recall correctly, in the Mexican trials of chloroquine for newly diagnosed glioblastoma, the chloroquine was administered daily for 12 months.
Can you ask her doctor for further advice, perhaps the doctor who wrote the prescriptions for these drugs?
I forgot to add the sci-hub link to the Valganciclovir study:
Deletehttps://sci-hub.tw/https://clincancerres.aacrjournals.org/content/early/2020/05/16/1078-0432.CCR-20-0369.full-text.pdf