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Title : Reviewing my mom's cocktail after 18 months of progression free survival
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Reviewing my mom's cocktail after 18 months of progression free survival

Hi folks/Stephen,

We had my mom's MRI about a month back, and her last MRI showed no growth of the disease, had no choline elevation(in the spectroscopy report) and didn't show perfusion either. She had a gross total resection and was diagnosed in Sep 2017.

She has completed her radiotherapy, 3 cycles of temozolomide and 6 cycles of lomustine+temozolomide. We moved to the Lomustine + Temozolomide protocol because her disease was methylated.

I'd like to get my cocktail reviewed from all of you, and want to know what are the next things that I should consider adding/updating on my cocktail so that things stable. I'd like to be prepared on what I should do next, and be prepared for a recurrence:

Following is my mom's current cocktail:

Diet: Low Carb High Fat/Ketogenic Diet

Supplements:

Supplement	Cap count
Boswellia Serratta 500 mg	8
Keppra 500 mg	2
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
TMG 1 g	3
Reishi 1g	2
Mebendezole 100 mg for 3 months + Doxycycline 100 mg for 1 month (We have skipped the statins from the care oncology protocol fearing it might be too heavy on her liver)	1
Artimisia 1 g	2
Chloroquine 250 mg	1
Ashwagandha 500 mg	1
Selinium 200 mcg	1
Vitamin A + D + K2 - 5000 IU	1
Molybdenum Glycenate 1g	1
Celebrex 200 mg	2
Green tea extract 500 mg 40% EGCG	2
Marrow Plus	6
Echinisea 500 mg	3
Astragalus tea 3g	1
Juice from 5g of Ginger	1
Garlic 2 cloves	3

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
PDGFRA


MY QUESTIONS

1. Has any one of you gone beyond 6 cycles of lomustine+temozolomide? How was your experience like, if you did? Because my mom's scans have been stable - the chemotherapy along with the supplements have definitely been working.

But because my mom's WBC counts have constantly been low(between 2-3k), and she gets affected by even the slightest of the infections - I'm not sure if I should go beyond the 6 cycle mark.

2. Should I consider adding anything, or updating anything in the current cocktail?

I have the following supplements that I plan to add:

- Low dose Naltrexone
- Valcyte(She was positive was CMV in her blood a a year back)
- Ruta 6 and Calceria Phos

Any other supplements that you would consider adding, which you think are high priority ones and that I've missed out on?

3. Are there any clinical trials/additional treatments that you would suggest doing beyond the current line of treatment that we currently are on? 

4. The next important step that we want to consider is immunotherapy/dendritic cell therapy. Which places in your opinion are the best places that we should consider for immunotherapy? My mom's tumor is stored in formalin/paraffin, sadly.

5. Which are the doctors that we should consider speaking to next for an integrative approach to the disease? We are already in touch with Patrice Surley for naturopathic supplements. Would love to know about more doctors who you've had good experience speaking to, and how they can help.

I look forward to hear from you all!

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