Title : Reviewing my mom's cocktail after 1 year progression free survival
link : Reviewing my mom's cocktail after 1 year progression free survival
Reviewing my mom's cocktail after 1 year progression free survival
Hi folks/Stephen,
We had my mom's MRI just a week 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 has completed her radiotherapy, 3 cycles of temozolomide and 3 cycles of lomustine+temozolomide. We moved to the Lomustine + Temozolomide protocol because her disease was methylated.
This group, especially Stephan have been extremely supportive so far in this tough journey. I wish to run through you all my mom's cocktail, and wanted to ask specific questions on her cocktail. Would really appreciate your help! My questions on my mom's cocktail are as follows:
1. Should I consider adding anything, or updating anything in the current cocktail?
2. Because my mom's choline elevation has constantly been coming down in the past three MRIs, my oncologist suggests we do three more cycles of lomustine + temozolomide. However, my mom's WBCs never come up beyond 1500 after the chemotherapy. The oncologist supplements with Iron and Folic Acid for WBC support, post which the count reaches 4000, both of which from what I've aware are negative prognostic factors for GBM. He says the effect of the chemo overpowers the negative prognostic factor of Iron/Folic Acid. Do you think that it is the right approach to go about things, or should I consider stopping the chemo and not supplement with Iron/Folic Acid?
Is there anything specific that you have tried and has worked well for your patient for WBC support?
3. Are there any clinical trials/additional treatments that you would suggest doing beyond the current line of treatment that we currently are on? For now, we plan to do three more cycles of chemo along with the supplements mentioned below.
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
Following is the diet and supplements that my mom is taking:
Diet: Ketogenic Diet/Low Carb high fat diet
Supplements
I look forward to hear from you all!
We had my mom's MRI just a week 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 has completed her radiotherapy, 3 cycles of temozolomide and 3 cycles of lomustine+temozolomide. We moved to the Lomustine + Temozolomide protocol because her disease was methylated.
This group, especially Stephan have been extremely supportive so far in this tough journey. I wish to run through you all my mom's cocktail, and wanted to ask specific questions on her cocktail. Would really appreciate your help! My questions on my mom's cocktail are as follows:
1. Should I consider adding anything, or updating anything in the current cocktail?
2. Because my mom's choline elevation has constantly been coming down in the past three MRIs, my oncologist suggests we do three more cycles of lomustine + temozolomide. However, my mom's WBCs never come up beyond 1500 after the chemotherapy. The oncologist supplements with Iron and Folic Acid for WBC support, post which the count reaches 4000, both of which from what I've aware are negative prognostic factors for GBM. He says the effect of the chemo overpowers the negative prognostic factor of Iron/Folic Acid. Do you think that it is the right approach to go about things, or should I consider stopping the chemo and not supplement with Iron/Folic Acid?
Is there anything specific that you have tried and has worked well for your patient for WBC support?
3. Are there any clinical trials/additional treatments that you would suggest doing beyond the current line of treatment that we currently are on? For now, we plan to do three more cycles of chemo along with the supplements mentioned below.
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
Following is the diet and supplements that my mom is taking:
Diet: Ketogenic Diet/Low Carb high fat diet
Supplements
I look forward to hear from you all!
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