What is the best thing to use for swelling/oedema? My dad uses now 16 mg dexamethasone a day, and is feeling fine when he uses it. But they want to temper down the dosage so they gave him a couple days a go half of the dosage a day: so 8 mg. He didn't go react well on it , so now they increased the dosage. But i know he can not take dexa for life becaus of side effects etc. so i am searching for the best brand of boswellia or other things
Any suggestions?
Saturday, 31 October 2015
Friday, 30 October 2015
For Those Interested in the Toca 511 Trial
Update 12-05-2015
Well, Friends, it's been a challenge. About a month ago, Chance had a severe seizure while at the gym and ended up in the hospital. Fortunately, we got him transferred to UCSF but a lot of problems resulted.
They increased his Decadron to 16 mg per day and his Keppra to 2500. It was scary. Dr. Taylor wanted him to go on Avastin because the 16 mg Decadron was not sustainable, so two weeks ago, Chance has his first Avastin infusion.
Stephen helped me add DCA and Honokoil, and change the cannabis from THC:CBD to CBD only. We looked to add Chloroquine but I couldn't get a prescription. When I asked Dr. Taylor for a prescription, she resisted because of possible liver toxicity. Stephen countered but in researching, we found Chloroquine sometimes caused vision problems, and that was a side effect we couldn't consider.
Chance's vision has been worsening. For a short time after the last seizure, it was vision and comprehension (left temporal tumor), but ultimately it was blurry vision, both eyes. He loves to read. This was a big loss. We visited a neuro-opthamologist last Wednesday. He had a very kind manner, but broke the news that there was nothing he could do. A field of vision test revealed he had lost a lot of vision on the right side, even though it didn't appear to Chance as right-side loss only. The doctor said it was a function of the tumor. If the tumor gets smaller, his vision could improve.
I was at the bottom of the barrel. Chance had an MRI scheduled yesterday and I was more anxious than ever. Chance, however, couldn't wait for the results - and knew they would be positive. Chance has been working with an acupuncturist (and amazing healer) for five or six weeks. He sees her once a week and it is the high point of his week. She told him this MRI would show improvement, but the next one would show vast improvement. I wanted to believe her, of course, but it seemed nothing was really making his symptoms better.
Yesterday was the longest day. He was in the MRI department over two hours and then there was a long delay before we saw Dr. Taylor. When she called us in, Chance said, "I know why you took so long to call us in. You couldn't find my tumor!" She laughed and said, "Well, not exactly, but your scan was much improved!"
I told Stephen how amazing it was that a few words can change EVERYTHING!
Dr. Taylor believes the Avastin and Toca 5-FC are working perfectly. Chance believes he and his acupuncturist are working perfectly. For me, who cares?! We have improvement the first time since his September scan.
Last night he began his second round of the 399 Toca 5-FC pills. After being at UCSF three times this week, we don't have to return until after Christmas! Our Holidays are looking very happy indeed.
-----------------
Original Post 10-30-2015
Hi,
I mentioned Chance was enrolled in this study earlier, but I thought I would create a Toca 511 thread so I can post his progress.
UCSF identifies the study in this manner: CC#09102 A Phase 1 Ascending Dose Trial of the Safety and Tolerability of Toca 511 in Patients with Recurrent High Grade Glioma.
General information: Toca 511 is a live virus that has been built to carry a gene into cancer cells. This process is called gene transfer. This gene carries instructions that cause the cancer cells to turn the flucytosine (5-FC) into a chemical that may kill cancer cells.
Chance was enrolled in Cohort 7 - the first cohort to receive the virus intravenously. Earlier cohorts required surgery to place the virus in the tumor bed. Chance had an infusion each day for three days (infusion took about five minutes, then you rest in place for one hour before release) on September 28, 29, 30, 2015.
He had no side effects of any kind from the virus infusions.
Last Monday, Chance was supposed to start the 5-FC pills - the next step in the process. Unfortunately he had a seizure at the gym on Sunday night and ended up in a local hospital followed by transfer to UCSF. He was released on Wednesday, then we returned today to start the 5-FC process.
When we talked about it originally, UCSF staffers said he would have to take a lot of pills during the process. Chance laughed and said it couldn't be more than his mom had him taking already, could it? Today we found out. These are big white pills, and he is to take 19 of them three times a day for seven days (399 pills!). He does this once every six weeks for three rounds. He will get an MRI every six weeks. If the 5-FC is working as it should, he can join a continuation arm of the study (which was a very big selling point for us).
It will be six weeks until we can determine if the 5-FC is doing its job. I'll be back then to update.
(Just for further information, this trial is being offered at a number of sites. They are currently enrolling Cohort #8 for surgical injection into tumor bed. Cohort #9 is the next one to inject intravenously. This time it will be given over five days instead of three.)
Well, Friends, it's been a challenge. About a month ago, Chance had a severe seizure while at the gym and ended up in the hospital. Fortunately, we got him transferred to UCSF but a lot of problems resulted.
They increased his Decadron to 16 mg per day and his Keppra to 2500. It was scary. Dr. Taylor wanted him to go on Avastin because the 16 mg Decadron was not sustainable, so two weeks ago, Chance has his first Avastin infusion.
Stephen helped me add DCA and Honokoil, and change the cannabis from THC:CBD to CBD only. We looked to add Chloroquine but I couldn't get a prescription. When I asked Dr. Taylor for a prescription, she resisted because of possible liver toxicity. Stephen countered but in researching, we found Chloroquine sometimes caused vision problems, and that was a side effect we couldn't consider.
Chance's vision has been worsening. For a short time after the last seizure, it was vision and comprehension (left temporal tumor), but ultimately it was blurry vision, both eyes. He loves to read. This was a big loss. We visited a neuro-opthamologist last Wednesday. He had a very kind manner, but broke the news that there was nothing he could do. A field of vision test revealed he had lost a lot of vision on the right side, even though it didn't appear to Chance as right-side loss only. The doctor said it was a function of the tumor. If the tumor gets smaller, his vision could improve.
I was at the bottom of the barrel. Chance had an MRI scheduled yesterday and I was more anxious than ever. Chance, however, couldn't wait for the results - and knew they would be positive. Chance has been working with an acupuncturist (and amazing healer) for five or six weeks. He sees her once a week and it is the high point of his week. She told him this MRI would show improvement, but the next one would show vast improvement. I wanted to believe her, of course, but it seemed nothing was really making his symptoms better.
Yesterday was the longest day. He was in the MRI department over two hours and then there was a long delay before we saw Dr. Taylor. When she called us in, Chance said, "I know why you took so long to call us in. You couldn't find my tumor!" She laughed and said, "Well, not exactly, but your scan was much improved!"
I told Stephen how amazing it was that a few words can change EVERYTHING!
Dr. Taylor believes the Avastin and Toca 5-FC are working perfectly. Chance believes he and his acupuncturist are working perfectly. For me, who cares?! We have improvement the first time since his September scan.
Last night he began his second round of the 399 Toca 5-FC pills. After being at UCSF three times this week, we don't have to return until after Christmas! Our Holidays are looking very happy indeed.
-----------------
Original Post 10-30-2015
Hi,
I mentioned Chance was enrolled in this study earlier, but I thought I would create a Toca 511 thread so I can post his progress.
UCSF identifies the study in this manner: CC#09102 A Phase 1 Ascending Dose Trial of the Safety and Tolerability of Toca 511 in Patients with Recurrent High Grade Glioma.
General information: Toca 511 is a live virus that has been built to carry a gene into cancer cells. This process is called gene transfer. This gene carries instructions that cause the cancer cells to turn the flucytosine (5-FC) into a chemical that may kill cancer cells.
Chance was enrolled in Cohort 7 - the first cohort to receive the virus intravenously. Earlier cohorts required surgery to place the virus in the tumor bed. Chance had an infusion each day for three days (infusion took about five minutes, then you rest in place for one hour before release) on September 28, 29, 30, 2015.
He had no side effects of any kind from the virus infusions.
Last Monday, Chance was supposed to start the 5-FC pills - the next step in the process. Unfortunately he had a seizure at the gym on Sunday night and ended up in a local hospital followed by transfer to UCSF. He was released on Wednesday, then we returned today to start the 5-FC process.
When we talked about it originally, UCSF staffers said he would have to take a lot of pills during the process. Chance laughed and said it couldn't be more than his mom had him taking already, could it? Today we found out. These are big white pills, and he is to take 19 of them three times a day for seven days (399 pills!). He does this once every six weeks for three rounds. He will get an MRI every six weeks. If the 5-FC is working as it should, he can join a continuation arm of the study (which was a very big selling point for us).
It will be six weeks until we can determine if the 5-FC is doing its job. I'll be back then to update.
(Just for further information, this trial is being offered at a number of sites. They are currently enrolling Cohort #8 for surgical injection into tumor bed. Cohort #9 is the next one to inject intravenously. This time it will be given over five days instead of three.)
Another online pharmacy.
Here is an online pharmacy in UK . It has only good reviews. I don't know if they are legit but they look good to me. They have cream Aldara and some other drugs which you can not find in drFoxpharmacy. What do you think?
http://www.medical-specialists.co.uk/searchproducts.php?searchString=aldara&btnMainSearch.x=21&btnMainSearch.y=10
http://www.medical-specialists.co.uk/searchproducts.php?searchString=aldara&btnMainSearch.x=21&btnMainSearch.y=10
More support for melatonin
Melatonergic system-based two-gene index is prognostic in human gliomas.
This study shows that two genes related to melatonin biosynthesis (ASMT) and metabolism (CYP1B1) is an independent prognostic factor in gliomas. This index is expressed as a ratio, and tumors with high expression of ASMT (melatonin synthesis) and low expression of CYP1B1 (which converts melatonin to a metabolite that can be excreted in the urine) tend to have better prognosis. Higher grade tumors tend to have a lower ratio (ASMT:CYP1B1).
This finding could be viewed as support for supplementing with melatonin, especially for higher grade gliomas.
Will add this study to the Library.
Tuesday, 27 October 2015
Chloroquine and caloric restriction
According to this study with mice bearing melanoma xenografts, chloroquine works nicely with caloric restriction.
CQ = chloroquine
CR = caloric restriction (mice were given 70% of their normal daily caloric intake)
Caloric restriction to the point of losing weight can't be sustained indefinitely of course, but such a strategy might work well during critical times, such as during the 6 weeks of chemoradiation.
Images from:
CQ = chloroquine
CR = caloric restriction (mice were given 70% of their normal daily caloric intake)
Caloric restriction to the point of losing weight can't be sustained indefinitely of course, but such a strategy might work well during critical times, such as during the 6 weeks of chemoradiation.
Images from:
Chloroquine-mediated lysosomal dysfunction enhances the anticancer effect of nutrient deprivation.
I'll add this study to the Brain Tumour Library
Ibuprofen and Care Oncology
Hi all,
My Mum was sadly diagnosed with Glioblastoma in July. I have been meaning to post her cocktail here and get involved in this blog, so bare with me, I plan to write a full post this weekend. This blog has been so helpful and Stephens website too so I am keen to start contributing.
I have an update from the COC (Care Oncology Clinic) in London. I went to speak with them yesterday. My Mum is seeing them and they have prescribed the four drugs for her on top of the standard treatment which is great. As I live in San Francisco I was unable to go with my Mum for her first appointment, but as I am over here in the UK for a few weeks I booked an appointment to go and speak with the Doctor there and ask my long list of questions.
One thing that I really wanted to share was that apparently there is a new form of Ibuprofen that is going to become available in the next few months that does not cause stomach irritation. The Doctor said that the COC will be looking at adding this to their list of prescribed medications. They have held off recommending it at the moment as it can cause stomach problems so with this new version they are hoping it will be a great addition to people fighting GBM.
I will let you know if I hear more and if they prescribe it to my Mum in a few months time.
The drugs they prescribe for GBM are Atorvastatin, Metformin, Mebendazole and Doxycycline and they all sound really worthwhile taking. They have been chosen by the COC as they seem to have the least side effects of all the potential complimentary drugs. I really recommend seeing these guys if you are in the UK or contacting them wherever you are in the world.
I will post Mums cocktail soon. She is keen to keep it as streamlined as possible and that is what we are trying right now.
All the best to everyone.
Alison
My Mum was sadly diagnosed with Glioblastoma in July. I have been meaning to post her cocktail here and get involved in this blog, so bare with me, I plan to write a full post this weekend. This blog has been so helpful and Stephens website too so I am keen to start contributing.
I have an update from the COC (Care Oncology Clinic) in London. I went to speak with them yesterday. My Mum is seeing them and they have prescribed the four drugs for her on top of the standard treatment which is great. As I live in San Francisco I was unable to go with my Mum for her first appointment, but as I am over here in the UK for a few weeks I booked an appointment to go and speak with the Doctor there and ask my long list of questions.
One thing that I really wanted to share was that apparently there is a new form of Ibuprofen that is going to become available in the next few months that does not cause stomach irritation. The Doctor said that the COC will be looking at adding this to their list of prescribed medications. They have held off recommending it at the moment as it can cause stomach problems so with this new version they are hoping it will be a great addition to people fighting GBM.
I will let you know if I hear more and if they prescribe it to my Mum in a few months time.
The drugs they prescribe for GBM are Atorvastatin, Metformin, Mebendazole and Doxycycline and they all sound really worthwhile taking. They have been chosen by the COC as they seem to have the least side effects of all the potential complimentary drugs. I really recommend seeing these guys if you are in the UK or contacting them wherever you are in the world.
I will post Mums cocktail soon. She is keen to keep it as streamlined as possible and that is what we are trying right now.
All the best to everyone.
Alison
Sunday, 25 October 2015
Cimetidine and Chloroquine Phosphate:
Cimetidine increases the half life of Chloroquine Phosphate so the amount of Chloroquine Phosphate should be reduced. But I don't know the numbers. Does anyone have this information? In others words because my son is taking 400 mg cimetidine 2x daily and 250 mg Chloroquine Phosphate daily, he is getting too much Chloroquine. Any information would be appreciated. Thanks!
Cimetidine increases the half life of Chloroquine Phosphate so the amount of Chloroquine Phosphate should be reduced. But I don't know the numbers. Does anyone have this information? In others words because my son is taking 400 mg cimetidine 2x daily and 250 mg Chloroquine Phosphate daily, he is getting too much Chloroquine. Any information would be appreciated. Thanks!
Would verapamil make Newcastle virus more effective?
We are planning to the the NewCastle virus. Would verapamil make it more effective?
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2890100/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2890100/
Temodar in the morning or in the evening with melatonin.
I have seen lots of publications stating that melatonin can overcome multidrug resistance to tmz. I am wondering if any of you are taking tmz at night with melatonin or are all of you taking it in the morning and what would be a good strategy.
Saturday, 24 October 2015
Zinc and p53 activation
We've discussed in the past the possibility that zinc supplementation can change the conformation of mutant p53 back to a more normal state. There is now evidence that oral zinc supplementation (in mice) can also activate non-mutant p53 and sensitize tumors to chemotherapy (in this study the chemotherapy was Adriamycin (doxorubicin).
The beneficial effect of Zinc(II) on low-dose chemotherapeutic sensitivity involves p53 activation in wild-type p53-carrying colorectal cancer cells
Might not be a bad idea to take higher dose zinc (100 mg) on the days surrounding chemotherapy, with the caveat that the effects of p53 in response to doxorubicin may not be the same in response to temozolomide.
Continuous intake of 40-50 mg zinc daily is said to be safe.
An additional amazing piece of evidence, is that both U251 (mutant p53) and U87 (wild-type p53) GBM cell lines were mostly positive for unfolded mutant-type p53 conformation. U87 cells were found to have four-fold increased levels of metallothionein 3. Metallothioneins are zinc-binding proteins. This zinc-binding activity of metallothioneins likely leads to unfolded mutant-like p53 proteins, even in the absence of a TP53 mutation!
High metallothionein predicts poor survival in glioblastoma multiforme
The beneficial effect of Zinc(II) on low-dose chemotherapeutic sensitivity involves p53 activation in wild-type p53-carrying colorectal cancer cells
Might not be a bad idea to take higher dose zinc (100 mg) on the days surrounding chemotherapy, with the caveat that the effects of p53 in response to doxorubicin may not be the same in response to temozolomide.
Continuous intake of 40-50 mg zinc daily is said to be safe.
An additional amazing piece of evidence, is that both U251 (mutant p53) and U87 (wild-type p53) GBM cell lines were mostly positive for unfolded mutant-type p53 conformation. U87 cells were found to have four-fold increased levels of metallothionein 3. Metallothioneins are zinc-binding proteins. This zinc-binding activity of metallothioneins likely leads to unfolded mutant-like p53 proteins, even in the absence of a TP53 mutation!
High metallothionein predicts poor survival in glioblastoma multiforme
Thursday, 22 October 2015
lansoprazole vs omeprazole
Steven and others
According to the paper you have posted on PPI's, it would appear in their research anyway, that lansoprazole is superior to omeprazole (I understand the potential lack of efficacy crossing the BBB). We are currently using omeprazole 60 mg bid around the time of TMZ use.
My questions:
Is there any reason to believe we should switch to lansoprazole based on this paper?
Omeprazole has been shown to improve the efficacy of DCA. Is there any information suggesting this activity is unique to omeprazole, or is it more likely a class effect of the drug?
What are people dosing lansoprazole at?
Thank you!
According to the paper you have posted on PPI's, it would appear in their research anyway, that lansoprazole is superior to omeprazole (I understand the potential lack of efficacy crossing the BBB). We are currently using omeprazole 60 mg bid around the time of TMZ use.
My questions:
Is there any reason to believe we should switch to lansoprazole based on this paper?
Omeprazole has been shown to improve the efficacy of DCA. Is there any information suggesting this activity is unique to omeprazole, or is it more likely a class effect of the drug?
What are people dosing lansoprazole at?
Thank you!
Tuesday, 20 October 2015
Disulfiram and DCA
After Jeremy finishes his 12th round of TMZ end of next month I plan on having his take disulfiram on a daily basis in an attempt to go after CSC's. Who is using both disulfiram and DCA concurrently and are you have any difficulties with PN? Are you rotating on and off disulfiram? The question that comes to my mind is whether disulfiram use intermittently will result is disulfiram resistant CSC (assuming it works at all). Sort of like taking an antibiotic for a bacterial infection might result in antibiotic resistant bacteria if the drug is not taken for a long enough duration. But then this has to be considered in light of developing PN. Additionally, what dose of disulfiram is being used with those combining DCA wand disulfiram? Any thoughts will be much appreciated. Thanks in advance.
Monday, 19 October 2015
Some peptide for IDH1 mutant tumors
http://www.nature.com/scibx/journal/v7/n29/full/scibx.2014.851.html
Thursday, 15 October 2015
It was suggested to me by a doctor that Xeloda can be used for glioblastoma.
Can Xeloda be used for glioblastoma. Are there any studies showing its efficacy for glioblastoma?
What could be side effects of PD1 inhibitors+ DC vaccines.Choosing immunotherapy clinic.
I am trying to choose a clinic in Germany. Some of them use only PD1 inhibitors in combination with DC Vaccines and others use DC vaccines with tetanus booster etc.
I am wondering what would be pros or cons of one versus another. Debating if to go for expensive PD1 inhibitor and peptide vaccine with unknown side effects or tetnus booster and peptide vaccine. Some of those clinics use 2 checkpoint inhibitors at once plus peptide vaccine. The side effects on nivo site seem scary. On the other hand tetanus booster plus cmv did not have any.
I am wondering what would be pros or cons of one versus another. Debating if to go for expensive PD1 inhibitor and peptide vaccine with unknown side effects or tetnus booster and peptide vaccine. Some of those clinics use 2 checkpoint inhibitors at once plus peptide vaccine. The side effects on nivo site seem scary. On the other hand tetanus booster plus cmv did not have any.
Wednesday, 14 October 2015
Hoxsey Clinic
Needing opinions out there...a friend of mine recently advised me to check out the Hoxsey clinic in Mexico. I've researched it quite a bit but just wondering if anyone has heard of this clinic and/or visited. Stephen, I know you are the "man" and hoping you could shed some light on the subject? Curious if their tonics and supplements are similar to some most of us have in our cocktails. Thanks for your help!
Daphney
Daphney
Any idea how to raise white blood counts?
Any ideas how to raise white blood counts or which drugs could be lowering it?
I am planning to start folate.
I am planning to start folate.
Rich cocktail
I think we never posted Rich cocktail. That one is especially important for people with unmethylated tumors.
Stephen W edit:
this info was taken from page 2 of the Glioblastoma...Our Cocktail & Story thread at Cancer Compass. The post is dated November 13, 2013. The "if I were to do this again" part at the bottom is therefore not necessarily accurate today, but we will let Rich make changes as he sees fit.
- Temodar (temozolomide), 80mg/day (calculated by 40mg/m**2/day)
- Avastin (bevacizumab), 10mg/kg at 21 day intervals
Stephen W edit:
this info was taken from page 2 of the Glioblastoma...Our Cocktail & Story thread at Cancer Compass. The post is dated November 13, 2013. The "if I were to do this again" part at the bottom is therefore not necessarily accurate today, but we will let Rich make changes as he sees fit.
- Temodar (temozolomide), 80mg/day (calculated by 40mg/m**2/day)
- Avastin (bevacizumab), 10mg/kg at 21 day intervals
-
Chloroquine Phosphate, 250mg/day
-
Celebrex (Celecoxib), 600mg/day
-
Verapamil, 480mg/day
-
Accutane (13-cis-retinoic-acid), 160 mg/day, 14 days on, 7 days off
-
Tagamet (cimetidine), 800mg/day
-
Melatonin, 20mg/day
-
Coriolus versicolor extract PSK/PSP, 3g/day
-
Maitake-D mushroom extract, 1200mg per day
-
Reishi mushroom extract, 2.5g per day
-
Resveratrol, 20mg per day
-
Green Tea Extract, 4g per day
-
Selenium, 200mcg per day
-
Soy Extract, 5g per day
-
Fermented Papaya Extract, 1000mg/day
-
Silibinin extract, 2g/day
-
Curcumin/tumeric extract: 800mg/day
-
Gamma-Linolenic Acid (GLA) Extract, 3g per day
-
Omega-3 Fish Oil Extract, 3gm per day
-
Fresh aloe vera (drink/mixed aloe, water, honey and grappa),1 cup/day
-
Standard multivitamin capsules, time-release
-
Vitamin D, 10,000 IU/day
-
Aspirin, 200mg per day
-
Brewed Green Tea, aprox. 2 liters per day
But
if I were to do this again, I would now also consider adding (at
least) the following:
-
Metformin, which regulates uptake of glucose
-
Disulfiram, which inhibits p-glycoprotein extrusion pump and block
glioma cell signal pathways
-
DCA, which inhibits glycolysis
-
Valproic acid (depakote), a known HDAC inhibitor, and potentially
reactivates p53
-
Chlorimipramine, which selectively blocks glioma mitochondrial
function
I NEED HELP
i just received the news about my fathers latest mri.
3 weeks ago they said it was operable, and we wanted to do dendritic cell therapy but in that hospital they didn´t want to give the tissue.
so we scheduled a new appointment with another hospital my dad got a new mri and now they say its inoperable and it spreaded.
I AM SO DEVASTATED !! WHAT CAN I DO, IS THERE STILL SOMETHING I CAN DO?
I think i read a while ago about some kind of morphine that causes regression please help me
3 weeks ago they said it was operable, and we wanted to do dendritic cell therapy but in that hospital they didn´t want to give the tissue.
so we scheduled a new appointment with another hospital my dad got a new mri and now they say its inoperable and it spreaded.
I AM SO DEVASTATED !! WHAT CAN I DO, IS THERE STILL SOMETHING I CAN DO?
I think i read a while ago about some kind of morphine that causes regression please help me
Sunday, 11 October 2015
63 y/o male w/ GBM.. update 1/2 way thru chemo/rad. Echoes?
Hi -
Tomorrow is day 21 of 42 and Dad is still alive and still taking his meds (see previous post for my cocktail).
Some observations - his speech and gait are marginally better. For the past two weeks both the Oncologist and Radiation Oncologist (RO) commented each week that he is doing a littler better than the previous week. The RO said that he is cautiously optimistic. Dad holds steady at a 3 of 5 for strength on his right side. His thinking is sharper - my husband noticed that Dad doesn't pause as long while speaking, he used to really grasp for words and now he gets them out (or tries) faster. Dad told me that his brain is working better. No pain, no seizures.
Now for the concerns... Dad said he's hearing things. I'm not sure if he's hearing voices or just that what he does hear echoes. Does anyone else have this experience? I'm not sure if the cocktail could cause it, or radiation(?) I hope I'm not making him schizophrenic. Also he has been nauseous lately - which is new for us. The only recent changes to the cocktail were the additions of Reishi mushroom, Prozac, and I also got a new script for Plaquenil (he was taking pills that had expired in 2010). I'm on safari as we speak ;-)
Thanks all.
Annie
_______________________________
Backstory: Diagnosed August 25th, scheduled for awake craniotomy Sept 17th, was ready with the 'donuts' marked on head, IV going, then Dr. came and told us the MRI showed the tumor had quadrupled and surgery was really not an option. EEG was borderline to begin with. We were sent home devastated. The very next day dad had a severe decline - our worst day yet. Dry heaves, pain that would not cease with oxycodone every 2 hours, complete loss of use of right side. Upped the dex one time (10mg) and thankfully recovered. Started chemo/radiation three days later. Were told to try Avastin or to wait for a 'rainy day' as Dad has not declined while on treatment. So far we wait. I can be persuaded to start if anyone has a strong case for it.
Tomorrow is day 21 of 42 and Dad is still alive and still taking his meds (see previous post for my cocktail).
Some observations - his speech and gait are marginally better. For the past two weeks both the Oncologist and Radiation Oncologist (RO) commented each week that he is doing a littler better than the previous week. The RO said that he is cautiously optimistic. Dad holds steady at a 3 of 5 for strength on his right side. His thinking is sharper - my husband noticed that Dad doesn't pause as long while speaking, he used to really grasp for words and now he gets them out (or tries) faster. Dad told me that his brain is working better. No pain, no seizures.
Now for the concerns... Dad said he's hearing things. I'm not sure if he's hearing voices or just that what he does hear echoes. Does anyone else have this experience? I'm not sure if the cocktail could cause it, or radiation(?) I hope I'm not making him schizophrenic. Also he has been nauseous lately - which is new for us. The only recent changes to the cocktail were the additions of Reishi mushroom, Prozac, and I also got a new script for Plaquenil (he was taking pills that had expired in 2010). I'm on safari as we speak ;-)
Thanks all.
Annie
_______________________________
Backstory: Diagnosed August 25th, scheduled for awake craniotomy Sept 17th, was ready with the 'donuts' marked on head, IV going, then Dr. came and told us the MRI showed the tumor had quadrupled and surgery was really not an option. EEG was borderline to begin with. We were sent home devastated. The very next day dad had a severe decline - our worst day yet. Dry heaves, pain that would not cease with oxycodone every 2 hours, complete loss of use of right side. Upped the dex one time (10mg) and thankfully recovered. Started chemo/radiation three days later. Were told to try Avastin or to wait for a 'rainy day' as Dad has not declined while on treatment. So far we wait. I can be persuaded to start if anyone has a strong case for it.
Ahmad's chemo cocktail
Hello Stephen and everyone..
I am sharing Ahmad's chemo cocktail..
Ahmad dx 12 October 2014..we had a recurrence and another surgery last June..
Finished radiation 19 August and started CCNU with a cocktail following Ben William's footsteps.
Drugs:
1.Ccnu
2.Tamoxifen 220 mg/day
3.Chloroquine phosphate 250 mg/day
4.Verapamil 480 mg/day bracketting CCNU
5.Prozac 20 mg/day
6.Lansoprasol, esomeprasole, omeprazole: alternatevely 1 each month..(protocol suggested by Anders: each week begins by high dose then standard then a day off)
7.Aspirin 200 mg/day
8.Accutane (still we did not start it) 120 mg/day 2 weeks on and 1 off except chemo weeks.
Supplements:
Milk thistle 900mg/day
Mushroom PSK 3g/day
Curcumin longvida 3600 mg/day
Omega 3 fish oil 3g/day
Pterostilbene 300 mg/day
Broccoli 1000 mg/day
Boswellia 1200mg/day
Green tea 4g/day
Selenium 200 mg/day
Genistein 5g/day
Garlic 6mg/day
Vitamin D3 2mcg/day
Vitamin C 2000 mg/day
Ahmad is following a ketogenic diet
Ahmad did not have any side effects..except recently when we introduced Prozac..I have the feeling this medication is making restless..and very nervous..I am not sure..
I need feedback from those taking Prozac (fluoxetine)..is this dose 20mg enough? And will the side effects reduce with time? I am also worried when using with verapamil..should I reduce the verapamil to 280 mg??
We will start Accutane after next round of CCNU..
God bless u all..and help us in our battle.
I am sharing Ahmad's chemo cocktail..
Ahmad dx 12 October 2014..we had a recurrence and another surgery last June..
Finished radiation 19 August and started CCNU with a cocktail following Ben William's footsteps.
Drugs:
1.Ccnu
2.Tamoxifen 220 mg/day
3.Chloroquine phosphate 250 mg/day
4.Verapamil 480 mg/day bracketting CCNU
5.Prozac 20 mg/day
6.Lansoprasol, esomeprasole, omeprazole: alternatevely 1 each month..(protocol suggested by Anders: each week begins by high dose then standard then a day off)
7.Aspirin 200 mg/day
8.Accutane (still we did not start it) 120 mg/day 2 weeks on and 1 off except chemo weeks.
Supplements:
Milk thistle 900mg/day
Mushroom PSK 3g/day
Curcumin longvida 3600 mg/day
Omega 3 fish oil 3g/day
Pterostilbene 300 mg/day
Broccoli 1000 mg/day
Boswellia 1200mg/day
Green tea 4g/day
Selenium 200 mg/day
Genistein 5g/day
Garlic 6mg/day
Vitamin D3 2mcg/day
Vitamin C 2000 mg/day
Ahmad is following a ketogenic diet
Ahmad did not have any side effects..except recently when we introduced Prozac..I have the feeling this medication is making restless..and very nervous..I am not sure..
I need feedback from those taking Prozac (fluoxetine)..is this dose 20mg enough? And will the side effects reduce with time? I am also worried when using with verapamil..should I reduce the verapamil to 280 mg??
We will start Accutane after next round of CCNU..
God bless u all..and help us in our battle.
Friday, 9 October 2015
CBD
hello everybody,
I read that many of you have cannabis oil in your cocktail.
Is CBD without THC also effective? dont quite understand the posts I read about it..
My dad takes CBD drops.
Thanks
kind regards,
Lycka
I read that many of you have cannabis oil in your cocktail.
Is CBD without THC also effective? dont quite understand the posts I read about it..
My dad takes CBD drops.
Thanks
kind regards,
Lycka
Thursday, 8 October 2015
DCVax
Dear friends,
If the DCVax is available at presentation, would this be a favoured option (in addition to standard chemoradiotherapy). Some are suggesting waiting until relapse, though I don't see the point of waiting.
Thanks for your thoughts
Matthew.
If the DCVax is available at presentation, would this be a favoured option (in addition to standard chemoradiotherapy). Some are suggesting waiting until relapse, though I don't see the point of waiting.
Thanks for your thoughts
Matthew.
Giant cell gbm
Can someone explain to me what giant cell gbm is ? does this have a better prognosis then regular gbm?
Wednesday, 7 October 2015
cusp 9 protocol,
Hi all,
1....artesunate 50 mg p.o. twice daily
2....aprepitant 80 mg p.o. twice daily
3....sertraline 50 mg p.o. twice daily
4....captopril 50 mg p.o. twice daily
5....auranofin 3 mg p.o. twice daily
6....nelfinavir 1250 mg p.o. twice daily
7....temozolomide 25 mg/M 2 p.o. twice daily
8....disulfiram 250 mg p.o. twice daily
9....copper (cupric) gluconate 2 mg p.o. twice daily
10...ketoconazole 200 mg p.o. twice daily
This was the original CUSP9 version (2013). They are now on version 3.
ritonavir replaces nelfinavir
celecoxib is in, copper gluconate is out
itraconazole replaces ketoconazole
minocycline is in, artesunate is out
The third CUSP9 paper should be published fairly soon.
Stephen,
we could use this info?
Melinda.
Befungin some Russian Chaga extract
There is someting called Befungin which is and extract of Chaga, tree funges. I am not sure if it would work for Brain tumors.
Tuesday, 6 October 2015
Ukrain
http://www.fonteine.com/ukrain.html
Opinions about ukrain ? Seems to be effective in brain tumors.
Opinions about ukrain ? Seems to be effective in brain tumors.
Cocktail Supplements when Pregnant
My wife has a Grade 3 anaplastic astrocytoma. We had just started on the cocktail approach when we realised that she was pregnant!
So my question is whether anybody has been in a similar situation or come across any information/research on whether cocktail supplements/drugs are fine to have during pregnancy?
We will probably err on the side of caution and not having anything during the first trimester, but if there is reasonable evidence that particular supplements/drugs are OK for pregnancy, we are hoping to restart at least a few of these supplements after the first trimester.
Here is the list of supplements/drugs that my wife had started having. I have bucketed it up into “Unsure” and “Probably OK” (self-explanatory).
Unsure
· Reishi· Maitake
· Turkey Tail
· Shiitake
· Curcumin
· Zinc
· Selenium
· Green tea – I think high quantities is not recommended because of caffeine content
Probably OK:
· Vitamin D3 (part of pregnancy multivitamins)· Fish oil (part of pregnancy multivitamins)
In Australia, there is a Therapeutic Goods Administration guide to drugs for pregnancy, but the guide doesn’t really contain the natural supplements and drugs.
Any guidance or help would be much appreciated!
P.S. It doesn’t help that most of the packaging has generic statements such as “If you are pregnant, we advise you consult your doctor before taking this supplement”…
Monday, 5 October 2015
FDA approves Optune for NEWLY DIAGNOSED glioblastoma
Al already sent this out on the news blast and I just did an update on Astrocytoma Options, but here it is again:
FDA Approves Optune in Combination with Temozolomide for theTreatment of Newly Diagnosed Glioblastoma
First therapy to be approved for newly diagnosed GBM since TMZ was approved on March 15, 2005.
FDA Approves Optune in Combination with Temozolomide for theTreatment of Newly Diagnosed Glioblastoma
First therapy to be approved for newly diagnosed GBM since TMZ was approved on March 15, 2005.
DNX-2401 virotherapy plus PD1 antibody trial
Many of you probably already saw this on Al's news blast, but I wanted to post it here too: a new phase 2 trial will be testing DNAtrix's DNX-2401 virotherapy with Merck's PD-1 antibody pembrolizumab (Keytruda).
http://www.businesswire.com/news/home/20151001005478/en/Merck-DNAtrix-Announce-Phase-2-Immuno-Oncology-Collaboration#.VhMY6vlVikp
This will be the second trial to combine a PD-1 antibody with a second immunotherapy (the other is Duke's trial combining their CMV-targeted dendritic cell vaccine with nivolumab, plus pre-conditioning of the vaccination site with tetanus/diptheria toxoid.
https://www.clinicaltrials.gov/ct2/show/NCT02529072
These are just the sorts of combinations we need!
http://www.businesswire.com/news/home/20151001005478/en/Merck-DNAtrix-Announce-Phase-2-Immuno-Oncology-Collaboration#.VhMY6vlVikp
This will be the second trial to combine a PD-1 antibody with a second immunotherapy (the other is Duke's trial combining their CMV-targeted dendritic cell vaccine with nivolumab, plus pre-conditioning of the vaccination site with tetanus/diptheria toxoid.
https://www.clinicaltrials.gov/ct2/show/NCT02529072
These are just the sorts of combinations we need!
Omeprazole blocking absorption of other drugs?
Hi -
Our primary Dr. (not NO) told me to stop giving dad Omeprazole as it blocks the absorption of our other medications and supplements. Does anyone know if this is true? The only conflicts I've seen online are the absorption of calcium, magnesium, and vitamin C. We now give Dad Ranitidine, but I want to add the Omeprazole and Priolsec back in assuming they aren't negating any other supplements or meds. He was taking 60mg twice a day of Omeprazole.
Thanks much.
Annie
Our primary Dr. (not NO) told me to stop giving dad Omeprazole as it blocks the absorption of our other medications and supplements. Does anyone know if this is true? The only conflicts I've seen online are the absorption of calcium, magnesium, and vitamin C. We now give Dad Ranitidine, but I want to add the Omeprazole and Priolsec back in assuming they aren't negating any other supplements or meds. He was taking 60mg twice a day of Omeprazole.
Thanks much.
Annie
Sunday, 4 October 2015
Metformin and temozolomide act synergistically
Metformin and temozolomide act synergistically to inhibit growth of glioma cells and glioma stem cells in vitro and in vivo (click on this link)
Unfortunately this was another flank-injected, non-orthotopic mouse model, and used an overly high metformin dose of 400 mg/kg mouse body weight. The mice were immunodeficient SCID mice. Still, most of us here are using metformin anyway, so this is additional encouragement. See especially figure 7A on page 10.
Unfortunately this was another flank-injected, non-orthotopic mouse model, and used an overly high metformin dose of 400 mg/kg mouse body weight. The mice were immunodeficient SCID mice. Still, most of us here are using metformin anyway, so this is additional encouragement. See especially figure 7A on page 10.
Saturday, 3 October 2015
Pao Pereira, some extract but I'm not sure if it would work for Glioblastoma
Here is some extract. The study was for pancreatic cancer but I wondered if it can be of any value for Glioblastoma
Magnetic field therapy?
Apologies - this is not specific to cocktails, but I consider this audience the most educated on GBM and would like your opinions. Has anyone looked into magnetic field therapy? I was reading in the Alternative Medicine Definitive Guide to Cancer about Dr. Philpott and magnetic field therapies. I can't find much out there confirming benefit and the anecdote in the book was brief and vague, but wanted to run it by you all in case someone has experience with it. Here are a few links:
http://drjockers.com/bio-magnetic-therapy/
http://www.azunimags.com/about_dr_philpott.html
I am considering the hat as it looks similar to the Novocure but of course much cheaper.
Thanks all.
Annie
http://drjockers.com/bio-magnetic-therapy/
http://www.azunimags.com/about_dr_philpott.html
I am considering the hat as it looks similar to the Novocure but of course much cheaper.
Thanks all.
Annie
Friday, 2 October 2015
I assume you can't buy that minerval anywhere
http://www.lipopharma.com/index.php/en/products/minerval
Thursday, 1 October 2015
Killer Cocktail Fights Brain Cancer
Steven
Ok, I admit the title of this post lacks specificity, but I took it from the title of the article.
Are you aware of any additional research with the combination? Looks very interesting.
http://www.sciencedaily.com/releases/2013/11/131125121143.htm
Ok, I admit the title of this post lacks specificity, but I took it from the title of the article.
Are you aware of any additional research with the combination? Looks very interesting.
http://www.sciencedaily.com/releases/2013/11/131125121143.htm
Need your advice -- regrowth
Hi all,
Today's MRI finally showed the reason why I almost lost my ability to walk or use hands. Surprise! Regrowth is here at the original site (brain stem). The MRI done just three weeks ago showed almost no tumor left, but I kept declining. My symptoms are quite different from the ones I had in February, but now it does not matter.
I need your advice about what to do next. On Monday they are having a consilium but I think they will just put me on Avastin, which I hesitate to do at the moment. We also discussed Optune but my NO thinks that a) It might not help, giving the location of the tumor and b) Our insurance will not pay for it. I, too, am not really ready to shave my head just yet :)
We called to Duke and MD Anderson right away, but they all want me to come over to discuss options.
Are there any trials or other options you would recommend?
Thank you.
Today's MRI finally showed the reason why I almost lost my ability to walk or use hands. Surprise! Regrowth is here at the original site (brain stem). The MRI done just three weeks ago showed almost no tumor left, but I kept declining. My symptoms are quite different from the ones I had in February, but now it does not matter.
I need your advice about what to do next. On Monday they are having a consilium but I think they will just put me on Avastin, which I hesitate to do at the moment. We also discussed Optune but my NO thinks that a) It might not help, giving the location of the tumor and b) Our insurance will not pay for it. I, too, am not really ready to shave my head just yet :)
We called to Duke and MD Anderson right away, but they all want me to come over to discuss options.
Are there any trials or other options you would recommend?
Thank you.
Gliomas, Allergies, Immune System
Here a fascinating study comparing the relationship between gliomas, allergies, and the immune system.
http://journals.lww.com/oncology-times/Fulltext/2015/10100/Evidence_of_Immune_Function_Changes_Years_Before.9.aspx
Grace and Peace,
Danny
http://journals.lww.com/oncology-times/Fulltext/2015/10100/Evidence_of_Immune_Function_Changes_Years_Before.9.aspx
Grace and Peace,
Danny