Saturday, 12 September 2015
Fluoxetine, another MGMT inhibitor?
Important new study here which I will summarize on Astrocytoma Options when I have the chance. Looks like we might be able to add fluoxetine (Prozac) to the list of agents (along with Keppra and disulfiram) that potentially inhibit MGMT activity in brain tumors and sensitize those tumors with unmethylated/active MGMT to TMZ/CCNU/BCNU. The main limitations of this study are that the tumor cells were injected into the mouse flank (not into the brain), the drug was injected intraperitoneally (not given orally), and the mice were nude (immunodeficient) mice, so potential effects of fluoxetine on the immune response were not taken into account.
Friday, 11 September 2015
Metformin for Low Grade Maintenance or Not?
I have residual, yet stable low grade oligodendroglioma. I'm trying to decide whether Metformin is worth taking or whether it could potentially contribute to a resistant mutation in the future. I've looked for some research but can't find any. Anyone have a theory on this?
Thursday, 10 September 2015
Mailing meds
I was trying to mail cimetidine and tons of other supplements to Poland because some are not available there and customs got it. I have no idea if it is legal to mail cimetidine or not. They want proof of purchase for each supplement translated into Polish and signed It will take me days to translate all the invoices from amazon. $500 in supplements and my brother is waiting for it for days already. :(
MRI results
This is the third MRI in a row that showed shrinkage. At some angles the tumor is not visible at all, at some barely visible. My NO said that if he did not know where to look, he would not have seen it.
I truly believe that the cocktail approach works (together with DCA and marijuana oil). I still haven't told the doctor about all these meds I take. Maybe next time :)
Thank you Stephen, Mike, Anna and everyone else who does their research and helps with advice. I feel like I am going the right way.
Wednesday, 9 September 2015
Surgery.. what to do
Dad got a 3rd opinion on surgery today. First two surgeons said no. Surgery is however an option with Dr. Silbergeld at UW (Seattle) but requires that Dad be awake, and that he name items on a powerpoint during the procedure. Dad was at about 61% ability to name the objects in our EGG yesterday and the cutoff for the Dr. to schedule the procedure is 60%. This is not an obvious - yes, you should proceed with surgery decision. There is risk involved. There are three spots where tumor is present in his brain and this was the only section that was deemed operable, but again is in the speech part of his brain. It is possible to make it worse, or to get in there, find that dad can't communicate well enough, and have to shut the whole thing down without any tumor resected. Does anyone have experience with surgery in this area of the brain or with Dr. Silbergeld? Dr. Berger is booked through the end of October and I don't believe we can wait that long. BTW we had stopped Celebrex, Aspirin and Fish Oil in anticipation of a possible surgery.
Monday, 7 September 2015
MJ's in peace
Hi all,
As of Sept 4, we decided to stop all treatments for Minjung. The scan showed that her tumor has grown substantially over the last few weeks, which explains various symptoms that developed recently. We were considering whether or not to pursue chemo+cocktail treatment immediately, but all of the oncologists we met told us that with her physical condition, she won't be able to tolerate a single round of temodar and that it will only increase her pain. The doctor told us that we could put her to sleep until she passes, so she wouldn't feel the pain and suffering at least. Her family decided that it is the best they can do for MJ at this point and agreed to his offer... and I respect their decision.
Here are some of the things that I would do differently if I could go back in time. Hopefully, it will help anyone who is in similar situation in devising their treatment plan. Her tumor is located at brain stem, which originally made it inoperable. Our initial plan was to implant shunt and start with RT+chemo protocol as soon as possible. However, we had to wait 3 months because the bleeding at her tumor wouldn't stop, which made shunt placement impossible. I kept thinking over and over that if we could start chemo and radiation right away without considering shunt option, we could have had a better chance. During that 3 month period, her condition became worse and her tumor grew... at that point, we literally begged our neurosurgeon to do the surgery because normally, neurosurgeons choses not to operate in situations like this.
Also, if your situation prevents you from doing RT+chemo simultaneously, may be doing radiation first isn't the best move, especially when your best bet is the cocktail approach. Radiation did not stop her tumor at all; instead, it grew. And by the time radiation was over, her symptoms became worse and we did not even have a shot at battling this evil disease with cocktail approach.
I still firmly believe that cocktail approach can produce miracle. Furthermore, GBM patients should try everything to increase their chance of beating this disease at every aspect of life; maintaining positive attitude, exercise, eating healthy food, laughter, releasing suppressed emotions, etc.
I also want to thank Stephen for creating this discussion venue and for helping us out with invaluable advice and information.
Please do not give up your hope.
My prayers are with all of you and your loved ones.
Sincerely,
Hyunsun
As of Sept 4, we decided to stop all treatments for Minjung. The scan showed that her tumor has grown substantially over the last few weeks, which explains various symptoms that developed recently. We were considering whether or not to pursue chemo+cocktail treatment immediately, but all of the oncologists we met told us that with her physical condition, she won't be able to tolerate a single round of temodar and that it will only increase her pain. The doctor told us that we could put her to sleep until she passes, so she wouldn't feel the pain and suffering at least. Her family decided that it is the best they can do for MJ at this point and agreed to his offer... and I respect their decision.
Here are some of the things that I would do differently if I could go back in time. Hopefully, it will help anyone who is in similar situation in devising their treatment plan. Her tumor is located at brain stem, which originally made it inoperable. Our initial plan was to implant shunt and start with RT+chemo protocol as soon as possible. However, we had to wait 3 months because the bleeding at her tumor wouldn't stop, which made shunt placement impossible. I kept thinking over and over that if we could start chemo and radiation right away without considering shunt option, we could have had a better chance. During that 3 month period, her condition became worse and her tumor grew... at that point, we literally begged our neurosurgeon to do the surgery because normally, neurosurgeons choses not to operate in situations like this.
Also, if your situation prevents you from doing RT+chemo simultaneously, may be doing radiation first isn't the best move, especially when your best bet is the cocktail approach. Radiation did not stop her tumor at all; instead, it grew. And by the time radiation was over, her symptoms became worse and we did not even have a shot at battling this evil disease with cocktail approach.
I still firmly believe that cocktail approach can produce miracle. Furthermore, GBM patients should try everything to increase their chance of beating this disease at every aspect of life; maintaining positive attitude, exercise, eating healthy food, laughter, releasing suppressed emotions, etc.
I also want to thank Stephen for creating this discussion venue and for helping us out with invaluable advice and information.
Please do not give up your hope.
My prayers are with all of you and your loved ones.
Sincerely,
Hyunsun
Sunday, 6 September 2015
Brain tumour diet
Just wondering what sort of diet is everyone doing? I have my hubby (Alan) on a low carb diet, that includes meat(grass fed) and cheese. I thought that was good then Anna mentioned IGF-1 that is connected to some cancers . Yikes!!
Updated 10/6/15 Cocktail: 63 y/o male with GBM
All - here is the updated list as of 10/6/15. I've ordered stronger Reishi mushroom capsules so that will cut our pills down by 5 a day. We're on day 14 and so far he's doing well. Blood work showed some elevated liver values but nothing concerning and no need to add the Avastin yet. His speech has improved and walking is a little better, but he shows signs of 'chemo brain' and issues with short term memory and fatigue.
| Drug | Dosage | Qty | When |
| Pterostilbene | 100mg | 2 tabs | 7:30 AM |
| Keppra | 500mg | 1 tab | 7:30 AM |
| Dexamethasone | 4mg | 2 tabs | 7:30 AM |
| Metformin | 500mg | 1 tab | 7:30 AM |
| Selenium | 200mcg | 1 tab | 7:30 AM |
| Verapamil | 180mg | 1 tab | 7:30 AM |
| Depakote | 500mg | 1 tab | 7:30 AM |
| Green Tea Extract | 500mg | 3 tabs | 7:30 AM |
| Ranitidine | 150mg | 1 tab | 7:30 AM |
| Reishi | 500mg | 6 tabs | 7:30 AM |
| Quercetin | 500mg | 3 tabs | 7:30 AM |
| Reservatrol | 125mg | 1 tab | 7:30 AM |
| Omeprazole | 20mg | 1 tab | 7:30 AM |
| Disulfiram | 250mg | 1 tab | NOON |
| Copper | 2mg | 3 tabs | NOON |
| Coriolus Versicolor (PSK) | 600mg | 2 tabs | NOON |
| Tumeric (NRF2) | 600mg | 2 tabs | NOON |
| Curcumin | 750mg | 1 tab | NOON |
| Celebrex | 200mg | 1 tab | NOON |
| Chloroquinine (Plaquenil) | 200mg | 1 tab | NOON |
| Pterostilbene | 100mg | 2 tabs | NOON |
| Pterostilbene | 50mg | 1 tab | NOON |
| Multi Vitamin | 1 tab | NOON | |
| Sulfamethoxazole | 1 tab | M/W/F NOON | |
| Vitamin D3 | 5000 IU | 1 tab | NOON |
| Green Tea Extract | 500mg | 3 tabs | NOON |
| Lycopene | 10mg | 1 tab | NOON |
| Maitake | 1000mg | 2 tabs | 5:00 PM |
| Reishi | 500mg | 4 tabs | 5:00 PM |
| Green Tea Extract | 500mg | 2 tabs | 5:00 PM |
| Coriolus Versicolor (PSK) | 600mg | 3 tabs | 5:00 PM |
| Keppra | 500mg | 1 tab | 5:00 PM |
| Dexamethasone | 4mg | 2 tabs | 5:00 PM |
| Depakote | 500mg | 1 tab | 5:00 PM |
| Metformin | 500mg | 1 tab | 5:00 PM |
| Ranitidine | 150mg | 1 tab | 5:00 PM |
| Fluoxetine | 20mg | 1 tab | 5:00 PM |
| Stool Softener | 100mg | 1 tab | 5:00 PM |
| Melatonin | 10mg | 2 tabs | 7:00 PM |
| Zofran | 8mg | 1 tab | 7:00 PM |
| Viagra | .25 tab | 7:30 PM | |
| Temodar | 140mg | 1 tab | 8:00 PM |
| Temodar | 20mg | 1 tab | 8:00 PM |
Questions:
1. Verapamil - I asked our primary Dr. for more, and told her that I want a total of 480 or 600mg per day. She instead upped us from 120mg to an extended release 180mg. Does anyone know if Rich/Ben took extended release or shorter acting Verapamil? Does anyone else take the extended release?
1. Verapamil - I asked our primary Dr. for more, and told her that I want a total of 480 or 600mg per day. She instead upped us from 120mg to an extended release 180mg. Does anyone know if Rich/Ben took extended release or shorter acting Verapamil? Does anyone else take the extended release?
Thanks.
Annie
Saturday, 5 September 2015
Can we do anything with 1-octanol
There is something like 1-octanol and supposedly in combination with temozolomide it had some positive results on mice but I don't know how would you deliver it. Maybe sniffing.
Here is some article about it.
http://www.sciencedaily.com/releases/2015/07/150727130818.htm
Here is some article about it.
http://www.sciencedaily.com/releases/2015/07/150727130818.htm
scL-TMZ or scL-P53. Anyone using or know anything about this?
Hi -
Been reading about scL-P53 on PubMed and it appears to be more effective than TMZ. Asked our NO about it and was told all TMZ is the same. Does anyone have any experience with the scL-TMZ? I can't find out if it's available or just in trials. Here are the links:
http://www.ncbi.nlm.nih.gov/pubmed/?term=scL-p53
http://www.ncbi.nlm.nih.gov/m/ pubmed/26325605/?i=1&from= glioblastoma
Thanks.
Annie
Been reading about scL-P53 on PubMed and it appears to be more effective than TMZ. Asked our NO about it and was told all TMZ is the same. Does anyone have any experience with the scL-TMZ? I can't find out if it's available or just in trials. Here are the links:
http://www.ncbi.nlm.nih.gov/pubmed/?term=scL-p53
http://www.ncbi.nlm.nih.gov/m/
Thanks.
Annie
CLA administration significantly reduces angiogenesis in the cerebellum.
CLA is found in cheese and dairy products especially grass fed produce. Link for study with rats and CLA.
http://www.ncbi.nlm.nih.gov/pubmed/18456247
http://www.ncbi.nlm.nih.gov/pubmed/18456247
Friday, 4 September 2015
Metformin influences progression in diabetic glioblastoma patients
Study abstract here
I haven't read it yet, but already uploaded it to the Brain Tumor Library (Folder 1 human studies -> metformin)
From the abstract: "Interestingly, diabetic patients with metformin therapy demonstrated prolonged progression-free intervals."
I will probably summarize the findings on Astrocytoma Options soon.
I haven't read it yet, but already uploaded it to the Brain Tumor Library (Folder 1 human studies -> metformin)
From the abstract: "Interestingly, diabetic patients with metformin therapy demonstrated prolonged progression-free intervals."
I will probably summarize the findings on Astrocytoma Options soon.
Artesunate
Hi,
does anyone know how to best get hold of artesunate? And is it only available as an infusion, or also as tablets?
I have come across this website: http://www.hepalin.com/ but would like to know if there are also other providers of this drug.
Best,
Lars
does anyone know how to best get hold of artesunate? And is it only available as an infusion, or also as tablets?
I have come across this website: http://www.hepalin.com/ but would like to know if there are also other providers of this drug.
Best,
Lars
Thursday, 3 September 2015
TMZ and antibiotics
Has anyone been put on antibiotics prophetically along with TMZ? I am not referring to Minocycline or similar antibiotic used off label, but rather as prophylaxis against infection. If so, what dosing schedule are you on?
And what with those apricot seeds?
So anybody knows what's going on with those apricot seeds? Are those of any value or not? The study on it was stopped or something like that?
Prolonged blocking of Ezh2 could lead to tumor progression
EDIT: I just edited the post title, to reflect what the article really says, and avoid spreading false information. Thanks Stephen!
---------------------------------------
Just found this study.
Article
---------------------------------------
Just found this study.
Article
Wednesday, 2 September 2015
Minocycline and autophagy
Steven
I was looking over the article you posted regarding minocycline and autophagy. Are the levels of minocycline discussed in this article clinically achievable? If they are, then we have another variable in the equation regarding when to use chloroquine. The other variable being zinc. If minocycline levels discussed in this article are clinically achievable, then how chloroquine is utilized might need reexamination to optimize the possible benefits of chloroquine, zinc and minocycline.
I was looking over the article you posted regarding minocycline and autophagy. Are the levels of minocycline discussed in this article clinically achievable? If they are, then we have another variable in the equation regarding when to use chloroquine. The other variable being zinc. If minocycline levels discussed in this article are clinically achievable, then how chloroquine is utilized might need reexamination to optimize the possible benefits of chloroquine, zinc and minocycline.
References document in Brain Tumor Library
I've created a document in the Brain Tumor Library simply called References. This is a selected list of the most relevant studies relating to the drugs and supplements we discuss on this blog. Clicking on the [PDF] link will take you to the folder in the Library where the study is kept.
This list could be especially helpful to show to doctors and oncologists who need some convincing that there is valid scientific rationale for these drugs that you may be requesting prescriptions for.
This list could be especially helpful to show to doctors and oncologists who need some convincing that there is valid scientific rationale for these drugs that you may be requesting prescriptions for.
What about statins?
So my brothers tumor has high PKB/AKT . As far as I understood Ben states in his pdf that lovastatin can suppress the PKB/AKT. I noticed that somebody in this group is using statin but not with the temozolomide but with another chemo agent. What do you think about adding it to the mix? My brother does have a high cholesterol.
Tuesday, 1 September 2015
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