Tuesday, 28 November 2017

Levi's cocktail update & pretty good MRI at 8 months

Luckily my husband (who is MGMT methylated, wild type and has a multifocal tumor) got a quite promising MRI report today after a slight progression in late August following radiation therapy. We need to wait for the NO's opinion till 12/18 but it's clear for us that this is good news because the report contains words like regression (both in the thalamic and frontobasal areas), reduced T2 signaling, reduced edema. 

The only negative statement mentions increased rCBV at some parts of the frontobasal tumor. Good results were not so surprising since he is doing very well. He basically slept through the 2 months after radiation therapy but now he is is back to normal. His only deficiency is left-side peripheral vision loss due to surgery. 

Since my previous post we made some changes to his cocktail. Thanks to a nice blog member's guidance my husband started to take D,L methadone a month ago. He will reach the therapeutic dose (2 x 35 drops) soon. It didn't have enough time to make a difference yet so I chalk the fairly good MRI results up to the cocktail approach. I hope that the next MRI in late February / early March will be even better thanks to methadone. 

With mebendazole, we try to follow Care Oncology's protocol so after the 3 months course of mebendazole which he we'll complete within days we'll alternate it with minocycline (instead of doxycyclin). Somebody stated on a forum that mebendazole and minocycline do the same job. I suppose mebendazole isn't the strongest part of our cocktail considering its bioavailability and the fact that he takes way less than the dosage used in clinical trials. So maybe it would be wiser to choose minocycline on the long term. What do you think, dear fighters & relatives, should we pick the substitution alternative or should we favour minocycline? If so, which one would be better, 100 mg or 200 mg? I have concerns about putting all our eggs in one basket. Maybe if the current cocktail works we can keep up with it, otherwise what will we have left in case of a progression if we blow all our ammunition now?

Current cocktail:

- TMZ 280 mg (5th cycle completed)
Tried to increase it to 380 mg for one cycle but BP dropped to 40,000 so it turns out that he can tolerate only 280 mg.

Morning, on an empty stomach: 
1,5 g PSK mushroom
250 mg EGCG (500 mg on TMZ days + fresh green tea)
1000 mcg sulforaphane from dried broccoli sprouts (2000 mcg on TMZ days)
2000 mg Fish Oil
250 mg vitamine C
D,L methadone 25 drops 
0.5 liter of beetroot-carrot-apple-orange juice ( I don't really believe that it can help but at least it's delicious.) I used to make fresh pomegranate juice daily but then I read that it can increase the concentration of corticosteroids so we stopped it. 

After breakfast:
Curcumin 1000 mg
Fluoxetine 40 mg
Alfacalcidol 2.5 mcg 
Metformin 500 mg 

After lunch:
mebendazole 100 mg / minocycline 100 mg
methylprednisolone 16 mg (I hope it'll be reduced after the next meeting with the NO) 
cimetidine 2 x 200 mg 

During the afternoon & evening 

cimetidine 1 x 200 mg
silymarin 630 mg (I increase it on TMZ days to 850 mg but just like everybody else I'm just guessing with the dosage)
celebrex 400 mg
metformin 500 mg (1500 mg on TMZ days in total) 

DCA 500 mg x 2 + 500 mg B1, 2 weeks on, 1 week off

This means 15.6 mg/ kg. He was on 500 mg x 3 / 20.4 mg/ kg for several weeks, parallel with his Temodal cycle increased to 380 mg but it caused neuropathy in his hands and feets and balance issues so we decreased DCA to 15.6 mg/ kg and symptoms disappeared. I'm not sure if it was Temodal or DCA because both of them were decreased after these issues. Now, we try DCA without B1. We'll see...

After dinner:
Chloroquine (Delagil) 250 mg (Only every other day since he takes cimetidine.) 
Selenium 200 mcg
cup of tomato juice as Lycopene source

Before bedtime:
D,L methadone 25 drops 
melatonin 20 mg 
PSK 1.5 g
cimetidine 1 x 200 mg

- Omeprazole 40 mg x 2 (2 days before and 2 days after TMZ days) 


  1. hi Ildi,
    it is very good news!
    I am glad to hear this about your husband.
    hope your NO will approve your MRI Report.
    I am sending my husbands MRI every time to his neurosurgeon , who made his 2/3 surgery on mail ,uploaded on google drive , and he is express his opinion, allways.
    have a very good healing !

    1. Thank you Melinda, I also wish you all the best!

  2. Minocycline and mebendazole are quite different and have different mechanisms of action. Perhaps it was minocycline and doxycycline you read about being comparable?

    The mebendazole dose prescribed by Care Oncology is conservative. High doses of mebendazole are generally tolerated well. In clinical trials of mebendazole for brain tumors in combination with standard of care, mebendazole doses of 500 mg three times a day were indicated in the protocol, but I believe the doses were escalated even further. The tolerability of mebendazole at high doses is likely linked to its poor bioavailability. For its primary use as an agent against intestinal worms, bioavailability is not important, since the drug does not need to get into the bloodstream for that purpose.

    One of the potential uses of minocycline is that it targets tumor-associated macrophages and microglia. Unlike mebendazole it isn't very well tolerated at higher doses. I would try to keep it in the cocktail. Sometimes doses of 100 mg twice daily are used, but if that isn't tolerable you could stick with 50 mg twice daily.

  3. Hi, Stephen, I copy the exact line from the Macmillan Cancer Support thread that was written by a GBM patient who is working with Care Oncology: "There are four drugs given in total but you only ever take three at the same time as the doxy and vermox do the same job essentially."

    The reason why he doesn't take more mebendazole is that it's available in only 100 mg tablets, so it would be 15 tablets a day. I'm not able to find it on any reliable webshop in its 500 mg form. It's crazy expensive,too. Almost 100 USD for a monthly supply of 100 mg daily. But in this way, it might easily be a waste of money and effort.

    Conclusion: we'll add minocycline and keep mebendazole (which may or may not help ) at the same time. Thank you for your quick response!

    1. Are those prices for brand name Vermox? Mebendazole is off patent and should not be that expensive, if purchased as a generic.


  4. Yeah, we use Vermox. We don't have generic meds in my country.

    1. Lots of online suppliers can ship to other countries as long as you can provide a prescription.

  5. Did your husband Levi have any side effects from the Methadone?

    My mother tried it but it made her very nauseous.

    Any ways to overcome this?

  6. My husband's only issue was constipation but 2-3 tablespoons of olive oil solved the problem. He didn't experience nausea so far. The doctor who prescribed methadone recommended taking ondansetron daily in case of nausea.

    How long did it take for your mother to reach the therapeutic dose? I got the advice to increase it very slowly (6-7 weeks approximately) to avoid side effects.

  7. Hi Iidi,

    Thank you for providing this information. :)

    My mum never got passed 5mg (Tablet form - Brand name Physeptone. We were not able to get the racemic mix so not sure if its the same Methadone).

    Our advice was only to stay on it short term due to withdrawals. 5mg for 3 days then increase every 3 days by 5mg until we reach 20mg for chemo. However, do you have your dad on it consistently? Has he had any issues with withdrawal symptoms?

    1. Unless otherwise stated, methadone is in a racemic mix of both levo- and dextro- forms. This is also the case for the Physeptone brand.


      "Methadone is a racemic mixture and levo-methadone is the active isomer"

    2. Hi Jackie,

      I'm not familiar with the tablet form but my husband takes the liquid form daily, as long as his chemo treatment continues (which will be 2 years if he is lucky enough). So there are no withdrawal symptoms. The doctor said if he wants to stop it he needs to decrease it drop by drop, each day a bit less.

  8. hi Ildi,

    I see that you have not added Propranolol to the cocktail, although you planned it? Were there any reasons for this?

  9. Hi Semyon,

    the reason we gave up on propranolol is that my husband has low blood pressure. In the CUSP9v3 protocol there's another blood pressure medication, captopril and they suggest "Prior to the addition of captopril, suggested minimum arterial blood pressure (ABP) requirements are 120/80 mm Hg."
    Maybe we'll add it to Avastin in case of tumor progression but I try not to think of that at this moment. I wish all the best to your mother!

    1. Unfortunately, we unsuccessfully tried propranolol today. My mother had low blood pressure and after the medicine there was a strong weakness.
      We will have to cancel propranolol too. It's a pity, because the combination of VT-122 (Etodolac/Celecoxib + Proranolol) was very promising ((

      Maybe it can be something to replace propranolol with similar effects, but not so much effect on blood pressure?

    2. By the way, our doctor suggested replacing 60 mg / day of propranolol with 5 mg / day of bisoprolol. But it is not known whether Bisprolol will have similar properties for VT-122.

  10. Hi Stephen, please advise. My husband just had his first seizure at the 1 year mark from diagnosis. Is it safe to continue with chloroquine? The patient information leaflet says that "don't take it if you have epilepsy". He was prescribed sodium valproate 300 mg 3 times a day and its leaflet also states that: "don't combine it with chloroquine."

    1. Drugs.com interactions checker says:

      "MONITOR: Chloroquine may lower the convulsive threshold, which may antagonize the action of antiepileptic medications. Seizures have been rarely reported in patients on chloroquine therapy. The mechanism is unknown."

      This is the main reason I can think of not to combine, that chloroquine can contribute to seizure activity, but this seems to be rare.


  11. Thanks, we wanted to stop CQ anyway after a year. This will be in early June. Maybe it won't cause too much trouble if he continues to take it for a few more weeks.