Dear all, i am sarah wife of Ahmad 34 years old, Egyptian, diagnosed with gbm last october (secondary tumor, his first was anaplastuc astrocytoma grade 3 in 2008 removed abd treated with radiation only)
When we had our gbm in october the surgery was performed in UK..the onchologist recommended starting with temodar directly as he was concerned with re-irradiation..Ahmad took 6 cycles then he had another recurrence same place.. I was aware of Ben williams' story and did a little research..wanted to introduce cocktail with the temodal..but the Egyptian Onchologist here didnt encourage this at all..so i went with his advice..
After the recurrence and surgery success Ahmad is currently having a radiation treatment, reduced dose 40Gy 20 sessions and we started a cocktail that i want to share:
Melatonine: 10mg, night
celelebrex: 200mg ×3 times a day
vitamine D3: 2mcg morning
cloroquine phosphate: 250mg morning
milk thistle: 380mg× 2times a day
boswellia: 600mg × 7 pills divided through the day with meals
omega 3 : 1g ×3 times a day
Also there is Proton Pump inhibitors:
We started with omeprazole 3days a week high dose (40mg×4) then 3 days regular dose (40mg×2) and the 7th day is off..this protocol was advised by Anders (i hope i got it right from him) based on research of a professor:Stefano Fais,
and shoud be rotating each month a different PPI: omeprazole, lansoprasole and esomeprasole
The boswellia dosage is quite high as Ahmad didnt want to take any steroids during radiation..he just took one shot at the first day i dnt renember the name of the steroid nor the dosage (but it is the one commonly used) ..then after 2 weeks of radiation he experienced 2 seizures so we went to the neurologist who adjusted the keppra and trileptal dosages slightly and gave him another single shot of steroids..(but also do not remember the name)
Anyways he is fine now..abd we are almost ending our third week of radiation..there is still one to go..
i didnt add any supplements to the cocktail during radiation i fear there might be a contradiction of the supplements with it..
No side effects till now..the melatonin made him sleepy at first but niw he is used to it abd we r planning to raise the dose to 20 mg.. we are also going to increase the milk thistle dose
After radiation i think we will wait 3 weeks then start the chemo cocktail wich will be mainly CCNU and tamoxifen like Ben did..but i still cant get the CCNU..as it is not available in Egypt..
We also started a ketogenic diet..and we bought DCA..but still did not use it as we r concerened with the interaction with caffein..
will post the chemo cocktail when we start it
Sarah
When we had our gbm in october the surgery was performed in UK..the onchologist recommended starting with temodar directly as he was concerned with re-irradiation..Ahmad took 6 cycles then he had another recurrence same place.. I was aware of Ben williams' story and did a little research..wanted to introduce cocktail with the temodal..but the Egyptian Onchologist here didnt encourage this at all..so i went with his advice..
After the recurrence and surgery success Ahmad is currently having a radiation treatment, reduced dose 40Gy 20 sessions and we started a cocktail that i want to share:
Melatonine: 10mg, night
celelebrex: 200mg ×3 times a day
vitamine D3: 2mcg morning
cloroquine phosphate: 250mg morning
milk thistle: 380mg× 2times a day
boswellia: 600mg × 7 pills divided through the day with meals
omega 3 : 1g ×3 times a day
Also there is Proton Pump inhibitors:
We started with omeprazole 3days a week high dose (40mg×4) then 3 days regular dose (40mg×2) and the 7th day is off..this protocol was advised by Anders (i hope i got it right from him) based on research of a professor:Stefano Fais,
and shoud be rotating each month a different PPI: omeprazole, lansoprasole and esomeprasole
The boswellia dosage is quite high as Ahmad didnt want to take any steroids during radiation..he just took one shot at the first day i dnt renember the name of the steroid nor the dosage (but it is the one commonly used) ..then after 2 weeks of radiation he experienced 2 seizures so we went to the neurologist who adjusted the keppra and trileptal dosages slightly and gave him another single shot of steroids..(but also do not remember the name)
Anyways he is fine now..abd we are almost ending our third week of radiation..there is still one to go..
i didnt add any supplements to the cocktail during radiation i fear there might be a contradiction of the supplements with it..
No side effects till now..the melatonin made him sleepy at first but niw he is used to it abd we r planning to raise the dose to 20 mg.. we are also going to increase the milk thistle dose
After radiation i think we will wait 3 weeks then start the chemo cocktail wich will be mainly CCNU and tamoxifen like Ben did..but i still cant get the CCNU..as it is not available in Egypt..
We also started a ketogenic diet..and we bought DCA..but still did not use it as we r concerened with the interaction with caffein..
will post the chemo cocktail when we start it
Sarah
I appreciate your sharing Sarah. I am new to the GBM world and am looking at everyone's cocktails and researching. Two scientists in my family are discouraging me so I get hope in seeing how others are responding to cocktails. Thank you. Annie
ReplyDeleteGood luck Annie..we have nothing to lose..my heart tells me that i should do my best and take every risk..
ReplyDeleteI was very much discouraged too by Ahmad's first NO..but when we had recurrence..and the NO literally had nothing to say..even the slightest words of support..i decided i will do whatever i can to avoid regrets.. i will post Ahmad's chemo cocktail soon
ReplyDelete