| 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
Annie
ReplyDeleteMy son is taking both Cimetadine and omeprazole. These are different drugs with different actions when used in our GBM cocktail. They both reduce stomach acid production, thereby increasing the gastric pH, so similar effects via different mechanisms when dealing with stomach pH.
I believe both metformin and disulfiram are important additions to your cocktail.
Hydroxychloroquine has not been shown to have the same effect as chloroquine. As such, I do not believe it has benefit in GBM's. Steven will have more to say on this.
I do not believe you need the aspirin when on celebrex. Celebrex is a selective COX 2 inhibitor so it is less problematic for the GI lining. ASA Impacts both COX 2 and COX 1. COX 1 inhibition increases the chances of developing GI irritation and bleeding. ASA impact platelet aggregation so it wound be beneficial when on Tamoxifen to reduce the chance of developing blood clots and a subsequent pulmonary embolism, stroke or other embolus related problem.
Mike, just a few questions as we want to add a PPI to our cocktail. Does Jeremy take omeprazole to add to the DCA effect? Does if effect the absorption of other drugs and how much does he take?
ReplyDeleteLinda
ReplyDeleteHe is taking theomeprazole, a recent addition to his cocktail, in hopes that it will impact the extrusion pump and enhance the effects of DCA. He will remain on omeprazole, likely on some rotation schedule, once his TMZ is finished in December. Dose is 60 mg bid beginning 2 days prior to Temodar and ending one day after his round of Temodar. There is certaily the chance that omeprazole, especially in the dose he is being given, might impact absorption of other drugs. But I found no contraindication or warning combining omeprazole with any of the other meds he is on.
Mike, What do you think of Verapamil for an extrusion pump? Is omeprazole better?
ReplyDeleteI just sent you a private email encase you didn't see my question so if you're reading this you can ignore the email. Is Jeremy eating a normal diet, does he avoid meat or dairy. Since Anna's reply I'm now a little worried about IGF-1 in those foods.
Linda
ReplyDeleteJeremy is not using verapamil so I am not intimately familiar with it. I do believe that it is only minimally useful, potentially anyway, when discussing its use with TMZ. The use of omeprazole as an extrusion pump inhibitor is questionable. As I understand it, the question is how much omeprazole crosses the BBB. This is unknown. Of course Ben recommends it as part of the cocktail. Until recently Jeremy has not been using omeprazole because I did not feel there was strong enough evidence to add yet another drug for him to take.
Jeremy was originally on the ketogenic diet with the help of a nutritionist at the Barrow Neurological Institute. It was not something he could stick with. Steven has a good write up about protein intake, but having talked with two NO about this and my friend that has been prescribing the off label drugs, none of them feel there is much clinical evidence to support following a restricted diet. I am not sure how I feel personally. At this point Jeremy is not eating simple carbohydrates. He is eating complex carbohydrates and he is obtaining a fair amount of carbs from the consumption of pomegranate juice, and a variety of berries. Protein intake has not been adjusted.
Having said all this, we might be changing our approach. His MRI's show no evidence of GBM's, both in the resected area and the inoperable brain stem GBM. The more diffuse non enhancing tumor has responded extremely well, the substantial edema has resolved, the mass effect is gone, but some of the non enhancing tumor, much of which has resolved, remains and has been stable for a few months. We want to mix things up a little to see if we can obtain a better response. Thats why omeprazole was added. We will also increase disulfiram to 500 mg daily and adding copper in conjunction with the disulfiram on his TMZ days. We are considering increasing Sertraline to 100 mg daily, and I might be bumping up the DCA dose. Because adjusting protein intake is not a big deal, we will likely add that change as well.
With regards to DCA, and maybe this should be a separate topic, the authors of the article Metabolic Modulation of Glioblastoma with DCA beleive the delayed response to DCA is due to the time required to achieve consistent blood levels. This appears, at least based on the dosing schedule they used, to take about three months. I question the validity of the rotation schedule of DCA that some are using. I understand why its done but I worry about how this impacts the ability of DCA to function as intended. If you read the supplement to this article that Steven has posted, you will see that at lower dose of 6.25 mg/kg bid did not result in peripheral neuropathy. No mention of the use of thiamine or other supplement to reduce the incidence of side effects was mentioned. A second thought I have is if thiamine reduces the incidence of side effects, does it also reduce the effectiveness of the DCA. Put another way, is the incidence of DCA induced side effects less when taken with thiamine, because the DCA is rendered less effective in the presence of thiamine? I have never seen this addressed. If we do not obtain the response in the non enhancing tumor with the aforementioned changes, then we might reduce the DCA dose to 6.25 mg/kg bid without thiamine.
Ok, that's it for my not so random, random musings for the day.
Mike
Mike, I just red through your comment. My brother was on omeprazole, cimetidine ,dca for a while. We added disulfiram then hand tremors started. We stopped it and those resolved. We added it again and those showed up again and now he still has them. He also has some other symptoms. His speach is slower can't find words. I am suspecting that this is from vit b1 deficiency. The dosages he was on were like Jerremys more or less. Possible that omeprazole caused that he did not absorb vit b1. He did take regular vit b1 but no benfontiamine. Now I am afraid to give him any of the drugs listed above. I hope that the symptoms will resolve.
DeleteAnna
DeleteIs the omeprazole taken daily or only on TMZ days? Same question with the disulfiram. What dose of Omeprazole and disulfiram is being used?
Thanks Mike, I haven't read Stephen's info about protein intake but will today. Next MRI we will be 4months on DCA at 20mg per kilo. Hopefully we'll see some reduction. Interesting thought about Thiamine, we are currently taking 500mg of thiamine, 250mg benfotiamine and B12 and haven't had any issues but i'll adjust thiamine to 250mg as I think that is what Jeremy takes and will follow your lead .
ReplyDeleteThank you Mike, and others for your input. I've made some modifications due to input from the NO's Pharmacist and have removed:
ReplyDeleteBoswelia (Pharmacist who works w/ NO said no): Multiple drug interactions with drug metabolism in the liver.
GLA: The common source of GLA, the borage plant (Borago officinalis), is considered carcinogenic in its herbal leaf form. It contains pyrrolizidine alkaloids that have been found to produce hepatic carcinomas
Celebrex (removed anyway pre-surgery, Pharm said not to take) No clinical evidence for cancer prevention in gliomas. Risk outweighs benefit: increased cardiovascular risk considering patient had recent stroke. Also increased risk for gastrointestinal bleeding. Also, drug interaction with chloroquine in which clearance of celebrex may be affected. Thus, potentially higher drug levels of celebrex and increased toxicity.
Milk Thistle (Pharmacist said no, if taking Depakote) No clinically significant drug interactions with Temodar. However can effect clearance of depakote (affects glucuronidated medications)
Also - we had to stop Verapamil as Dad's pulse dropped pretty low. Has anyone else run into this and do you have any advice or suggested alternatives?
NO is OK with adding Metformin and Disulfram so for that I am happy
Thanks
Annie
Annie,
ReplyDeleteHow low did your dad's pulse drop to? Did Verapamil cause any other side effects?
40s. It's usually 55 ish anyway but it got to the low 40s so we stopped. It's now in the mid 60s which is great for dad. No other side effects.
DeleteThanks Annie, we had the same issue
ReplyDelete