Stephen, I can’t remember what RX/supplements to hold or continue during radiation and/or TMZ?
Can you help?
*Oct 2013 husband diagnosed GBM#4, left frontal lobe, total resection, no seizures.
*Total 6 wks SOC, TMZ & Radiation. Drug cocktails below.
*Dec 2013- Oct 2015 Optune Trial/TMZ. Stopped Optune due to skin issues.
*Jan 2015, NO thought recurrence so changed him to CCNU cuz TMZ “failed him”. The CCNU was brutal on him so he stopped it July 2015.
*I did not agree it was recurrence as looked like necrosis to me. I was upset off TMZ since Methylated. June 2015 took him to UCSF/Berger. He agreed didn’t think recurrence either so we decided to ”watch and wait". Since “supposed” recurrence never materialized, he stopped all treatments July 2015 except Drug Cocktails.
*Jan 2018, GBM recurrence a little forward of original tumor (not area they watched b4). Full resection. Since still methylated and was treatment free since July 2015, decided to try TMZ for 12 mos and Cyberknife radiation for 5 days.
Tumor is: IDH-1 R132H wildtype. ATRX retained, Mib 10%, MGMT Methylated
Will have the gene testing results soon.
Hubby is 76.5 yrs old, has some cognitive/motivation issues from 2013 treatment but physically adept.
Due to his age, I am light on the cocktails:
A) Chemo: TMZ, 300mg 5/23
1) Divalproex Sodium (Valproex Acid) 250 mg DR x 2 daily
2) Sulfamethox-TMP DS 800 – 160 MG TAB 3 days a wk
3) Celecoxib 200 mg x 2
4) Cimetidine, 200 mg x 2
5) Maitake D fraction Pro 4x, 100 mg x 6
6) Coriolus – PSP, 400 mg x 6
7) LEF European Milk Thistle: 240 Silymarin, 90mg Silybin, 24 mg Isosilybin A & B, phospholipids x 2
8) D3-5,000 IU 1 pill x 1
9) BroccoMax Broccoli seed extract (sulforaphane Glucosinolate), 30 mg x 1
10) pTeroPure (Pterostilbene) 50 mg x 1
11) Mega Lycopene, 15 mg x 1
12) Melatonin, 20 mg x 1
13) Longvida curcumin, 1000 mg x 1
14) Multi-vitamin (not sure if I should give him??)
15) Pro Omega, 1175 mg x 1
16) Berberine, 500 mg x 1
17) Probiotic x 1
18) Decaf Mega Green Tea Extract, 725 mg x 2
19) LEF Ultra Soy Extract, genistein not taking right now
20) Boswellia, not taking currently
Thank you and Blessings to you all!
Candy
Showing posts with label vitamin_E. Show all posts
Showing posts with label vitamin_E. Show all posts
Thursday, 1 March 2018
Sunday, 21 January 2018
Improvement of the ketogenic diet
In many studies, it has been shown that a ketogenic diet can be a useful supplement in the treatment of glioblastoma. I would like to discuss the improvement of this diet on the basis of recent research.
1. Ketogenic diet + α-lipoic acid and hydroxycitrate
2017 https://www.ncbi.nlm.nih.gov/pubmed/28122260
"To decrease anabolism, glucose uptake should be reduced (ketogenic diet). To increase catabolism, the oxidative phosphorylation should be restored. Treatment with a combination of α-lipoic acid and hydroxycitrate has been shown to be effective in multiple animal models."
2016 http://crescopublications.org/pdf/CROOA/CROOA-2-019.pdf
"Combination of Metabolic Treatment of Aggressive Primary Brain Tumour
and Multiple Metastases of the Brain"
"We report the cases of 12 patients with advanced brain tumor. They were all treated with
conventional treatment and a combination of sodium R lipoate (800 mgbid), hydroxycitrate at 500 mg tid and low-dose naltrexone at 5 mg at bedtime. Eight patients had primary brain tumour (n=8 including five glioblastomas) four patients had multiple brain metastases."
2. Ketogenic diet + Fenofibrate ?
2016 https://www.ncbi.nlm.nih.gov/pubmed/26869992
"Our results reveal a new, intriguing aspect of cancer cell biology and highlight the benefits of fenofibrate as a supplement to both canonical and dietary (ketogenic) therapeutic approaches against glioblastoma."
2015 https://www.ncbi.nlm.nih.gov/pubmed/26172294
"Given that fenofibrate is a widely used non-toxic drug, we suggest its use in patients with glioblastoma multiforme (GBM)."
2017 https://www.ncbi.nlm.nih.gov/pubmed/28459367
"...the lipid-lowering agent fenofibrate...have potential to lower synthesis or effects of G(M)-CSF and thus deprive a glioblastoma of some of the growth promoting contributions of bone marrow and G(M)-CSF.
It's strange, but in this blog I did not find any information about Fenofibrate. So is it necessary to add it to the ketogenic diet?
3. Ketogenic diet
"Inhibition of glutamine metabolism slows the in vitro and in vivo growth of GLNHigh GBM cultures despite metabolic adaptation to nutrient availability, in particular by increasing pyruvate shuttling into mitochondria."
"...the pleiotropic metabolic inhibitor EGCG, targeting glutamine metabolism, specifically reduces tumor proliferation, in vitro and in vivo, of mesenchymal GLNHigh cells."
How can the findings of this study be used? Only EGCG can not inhibit glutamine metabolism. Maybe there are more options?
4. Ketogenic diet
Wednesday, 4 May 2016
Antioxidants and CBD - a warning (?)
Hi Everyone!
I don't post here frequently but I'm an active reader. First of all, thank you Stephen and all good people who share their stories and knowledge about battling GBM and other gliomas. The information gathered here is priceless!
A couple of days ago I came across some information that antioxidants appear to reverse the cancer-inhibiting properties of CBD what leads to a conculsion that extensive supplementation with AOX should be significantly reduced or stopped, e.g. curcumin, CoQ10 etc.
Has anyone got any more detailed info on that?
More details on: http://www.beyondthc.com/antioxidants-and-cbd-a-warning/
I don't post here frequently but I'm an active reader. First of all, thank you Stephen and all good people who share their stories and knowledge about battling GBM and other gliomas. The information gathered here is priceless!
A couple of days ago I came across some information that antioxidants appear to reverse the cancer-inhibiting properties of CBD what leads to a conculsion that extensive supplementation with AOX should be significantly reduced or stopped, e.g. curcumin, CoQ10 etc.
Has anyone got any more detailed info on that?
More details on: http://www.beyondthc.com/antioxidants-and-cbd-a-warning/
Sunday, 30 August 2015
New to GBM. 63 y/o Male. Here's my cocktail base plan. Thoughts?
Hi All -
First let me thank you for this board, for your posts and stories, and for your inspiration in a time of such devastation. My father was diagnosed with a stage 4 GBM on Tuesday. It's in his frontal left lobe and impairing speech and some basic memory, but nothing else. Were getting second opinions on surgical options tomorrow and again hopefully Tuesday. First NS said no. I was in shock (diagnosis time) and didn't know enough questions to ask.
I now want him to take everything I can to help. His vitals, heart, kidneys, liver etc are all excellent. He's very fit, non-smoker/drinker. He is on board with whatever I suggest and will cooperate. He is reading Ben William's book but cannot actively participate in boards like this as his brain is impaired. Typing and thinking of words is severely impacted. My mother is a retired RN and will monitor blood pressure daily and blood glucose should we incorporate DCA or Metformin. That said, two scientists in my extended family rejected my suggestions and instead pushed the 'clinical trial' route - which I believe benefits the greater good of mankind in the long term but does nothing for the subjects. It's hard not to be discouraged by their emails of 'concern'. I believe they would have a different opinion were it their loved one. I've been following BW and Rich's doses from the cancer compass board as a starting point but unfortunately my background is in IT and not science. Here's what I want to give dad. Am I overlooking a drug/supplement that is crucial? Unfortunately I don't know the MGMT status or IDH1 gene status. I plan to ask tomorrow. Any suggested edits? So far he is tolerating everything I've thrown at him.
First let me thank you for this board, for your posts and stories, and for your inspiration in a time of such devastation. My father was diagnosed with a stage 4 GBM on Tuesday. It's in his frontal left lobe and impairing speech and some basic memory, but nothing else. Were getting second opinions on surgical options tomorrow and again hopefully Tuesday. First NS said no. I was in shock (diagnosis time) and didn't know enough questions to ask.
I now want him to take everything I can to help. His vitals, heart, kidneys, liver etc are all excellent. He's very fit, non-smoker/drinker. He is on board with whatever I suggest and will cooperate. He is reading Ben William's book but cannot actively participate in boards like this as his brain is impaired. Typing and thinking of words is severely impacted. My mother is a retired RN and will monitor blood pressure daily and blood glucose should we incorporate DCA or Metformin. That said, two scientists in my extended family rejected my suggestions and instead pushed the 'clinical trial' route - which I believe benefits the greater good of mankind in the long term but does nothing for the subjects. It's hard not to be discouraged by their emails of 'concern'. I believe they would have a different opinion were it their loved one. I've been following BW and Rich's doses from the cancer compass board as a starting point but unfortunately my background is in IT and not science. Here's what I want to give dad. Am I overlooking a drug/supplement that is crucial? Unfortunately I don't know the MGMT status or IDH1 gene status. I plan to ask tomorrow. Any suggested edits? So far he is tolerating everything I've thrown at him.
BETWEEN CHEMO SESSIONS:
- Accutane (13-cis-retin-acid), 160 mg/day, 14 days on, 7 days off DON'T HAVE YET - How to get in US??
2 WEEKS BEFORE CHEMO:
- 220 mg Tamoxifen, 2 weeks before chemo. DON'T HAVE YET
need aspirin daily and long walks for blood clotting
START WEEK BEFORE CHEMO:
- Verapamil, 600mg/day Blocks extrusion pump mechanism at BBB increasing penetration of chemo (BCNU)
DAY OF CHEMO:
- Viagara 60 minute before (BBB helper) Would this do the same thing as Verapamil? Any conflicts?
CONTINUE DURING CHEMO:
- Verapamil, 600mg/day
- Verapamil, 600mg/day
CONSTANT (+ during chemo/radiation):
- Brewed Green Tea
- cannabis (TCH + CBD)
- Celebrex (Celecoxib), 200mg/day (I want to up this to 600. Will push our Dr)
- Chloroquine Phosphate, 250mg/day (Dr said no, family member had a script)
- Coriolus versicolor extract PSK/PSP, 3g/day DON'T HAVE YET - On the way via internet
- Curcumin/tumeric extract: 800mg/day
- Decadrone 2 mg day (NS prescribed)
- Fermented Papaya Extract, 1000mg/day DON'T HAVE YET
- Fresh aloe vera (drink/mixed aloe, water, honey),1 cup/day
- Gamma-Linolenic Acid (GLA) Extract, 3g per day
- Green Tea Extract, 4g per day
- Keppra (NS prescribed. Not sure dose)
- Maitake-D mushroom extract, 1200mg per day
- Melatonin, 20mg/day
- Omega-3 Fish Oil Extract, 3gm per day
- Omeprazole (NS prescribed, not sure dose)
- Reishi mushroom extract, 2.5g per day
- Resveratrol, 20mg per day
- Selenium, 200mcg per day
- Silibinin extract, 2g/day
- Soy Extract, 5g per day
- Standard multivitamin capsules, time-release
- Tagamet (cimetidine), 800mg/day
- Vitamin D 5000 mg a week (Dr said this was the max. I want to increase to 10,000 a day)
Thanks for any help or encouragement. I'm incredibly grateful for all of you.
Annie
Friday, 7 August 2015
Our story
Hi everyone.
My name is Hyunsun. I live in South Korea with my fiance Minjung. Minjung was diagnosed with GBM this April. The tumor was about 4 cm and located at her brainstem, which made it inoperable.
The original plan was to place a permanent internal shunt, but since her tumor did not stop bleeding she had to spend entire 2 months in ICU before her tumor grew and her condition drastically worsened. At this point, our doctor gave us 2 options: either keep waiting for the bleeding to stop or have the surgery at the risk of a very severe deficiency or even worse, death. Her family and I decided that the latter at least provided some hope since we knew from research that surgical resection is one of the most important factors of long-term survival. Fortunately, our neurosurgeon, who is one of the best here in South Korea, was able to remove about 80% of her tumor. However she is not able to speak and has problems with balancing, both of which are improving. She finished her radiation therapy 4 days ago but due to edema, she's on steroid treatment. We're still waiting for our oncologist to start temodar.
I read all of Ben's articles and his book, talked to Rich and Stephen and got invaluable advice from all of them. I couldn't thank them more.
Based on what I have learned, I figured that it'd be good to have her start taking some of the pills since it's likely that chemo will start very soon. The list of pharmaceuticals isn't complete yet because we haven't got the lab results. But when we do get it on Monday, I'll be able to do more research and hopefully come up with a more tailored list.
Until then, we want her to start take the ones that helps boost her immune system. We started with 20 mg of melatonin and 6 pills of green tea extracts/day. And we might add garlic and mushroom extracts in a few days as well.
So far, this is what we have for nonprescription supplements
1. green tea extracts
2. Maitake-D mushroom extract
3. Resveratrol
4. Selenium
5. Curcumin/tumeric
6. Omega 3
7. Vitamin D3
8. Vitamin E
9. garlic extract
10. milk thistle extract
11. melatonin
Any thoughts/suggestions on the order in which she takes them?
I'll update the list of prescription drugs once I have all the information about her gene expression, etc.
Best,
Hyunsun
ps. There is also this book that I read, Radical Remission by Dr. Kelly Turner. It lists 9 common key factors among survivors who has experienced medically unexplainable recovery from terminal cancers.
You can find the 9 factors @ this link below
http://www.mindbodygreen.com/0-12996/9-key-factors-affecting-radical-remission-from-cancer.html
I sincerely hope that everyone participating in this forum gets to experience a radical remission.
Let us not lose hope.
My name is Hyunsun. I live in South Korea with my fiance Minjung. Minjung was diagnosed with GBM this April. The tumor was about 4 cm and located at her brainstem, which made it inoperable.
The original plan was to place a permanent internal shunt, but since her tumor did not stop bleeding she had to spend entire 2 months in ICU before her tumor grew and her condition drastically worsened. At this point, our doctor gave us 2 options: either keep waiting for the bleeding to stop or have the surgery at the risk of a very severe deficiency or even worse, death. Her family and I decided that the latter at least provided some hope since we knew from research that surgical resection is one of the most important factors of long-term survival. Fortunately, our neurosurgeon, who is one of the best here in South Korea, was able to remove about 80% of her tumor. However she is not able to speak and has problems with balancing, both of which are improving. She finished her radiation therapy 4 days ago but due to edema, she's on steroid treatment. We're still waiting for our oncologist to start temodar.
I read all of Ben's articles and his book, talked to Rich and Stephen and got invaluable advice from all of them. I couldn't thank them more.
Based on what I have learned, I figured that it'd be good to have her start taking some of the pills since it's likely that chemo will start very soon. The list of pharmaceuticals isn't complete yet because we haven't got the lab results. But when we do get it on Monday, I'll be able to do more research and hopefully come up with a more tailored list.
Until then, we want her to start take the ones that helps boost her immune system. We started with 20 mg of melatonin and 6 pills of green tea extracts/day. And we might add garlic and mushroom extracts in a few days as well.
So far, this is what we have for nonprescription supplements
1. green tea extracts
2. Maitake-D mushroom extract
3. Resveratrol
4. Selenium
5. Curcumin/tumeric
6. Omega 3
7. Vitamin D3
8. Vitamin E
9. garlic extract
10. milk thistle extract
11. melatonin
Any thoughts/suggestions on the order in which she takes them?
I'll update the list of prescription drugs once I have all the information about her gene expression, etc.
Best,
Hyunsun
ps. There is also this book that I read, Radical Remission by Dr. Kelly Turner. It lists 9 common key factors among survivors who has experienced medically unexplainable recovery from terminal cancers.
You can find the 9 factors @ this link below
http://www.mindbodygreen.com/0-12996/9-key-factors-affecting-radical-remission-from-cancer.html
I sincerely hope that everyone participating in this forum gets to experience a radical remission.
Let us not lose hope.
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