Monday, 14 November 2016

Advice for making most of last rounds of TMZ? (14/11/2016)

Hi Everyone,

Just wanted to update you on our progress and get some advice or recommendations (here is our intro to group post). Dad will be starting his 4th round of chemo this week, with 2 rounds left after that. We have had a letter stating the MRI results from September, the first one since before the start of chemoradiation in July. It says there is residual tumour at the site of original surgery (he had total resection at the time), plus a new nodule in the region of the parahippocampus (this looks to me to be deeper and therefore less like to be operable if it becomes more of a problem). Dad is still 100% and apart from some tiredness and a bit of weight loss he hasn’t had any other noticeable symptoms. 

Below is what he is taking at the moment. I have tried to add to the cocktail each round. I was a bit reluctant to add more considering this is a fair amount of tablets, but with the MRI result I wanted to make sure we are targeting the tumour from as many angles as possible (in red are things we have added to or have changed).

Prescription 6 months of Adjuvant Chemo therapy following Radiotherapy (to-date 4 out of 6 completed):
Temozolomide (Temodal - Merck Sharp & Dohme 350mg capsule, BMI based dosage) morning for 5 consecutive days every month following Radiotherapy
Ondansetron(Milpharm 8mg tablet) anti sick taken morning for 5 consecutive days every month with Temodal

Ongoing Prescription by special request:
Celebrex (Pfizer 100mg capsule)    1x morning
Chloroquine (Avloclor - Alliance Pharma 250mg tablet) 1/2 tablet twice a week in morning (available off prescription)
Cholecalciferol 800IU (Fultium D3 - MA Hodder Internis, equiv. to 20 micrograms Vitamin D),  1x capsule in morning (available off prescription under other brands)

Ongoing Additional Supplements:
Cannabinoids (CBD Brothers CBD Oil Blue Edition) 3x drop morning and evening
Mycelium Extract psp50 (ORIVeDA 350mg capsule) 3x morning and 3x evening
Fish Oil (Omega 3 - Solgar 950mg capsule) 1x morning and 1x evening
Berberine (Swanson 400mg capsule)     1x morning and 1x evening
Boswellia (Solgar 420mg capsule) 1x morning and 1x evening
Ashwagandha (Solgar 400mg capsule)   1x morning and 1x evening
Milk Thistle Fruits (Silamarie - Bio-Health 450mg capsule) 1x morning and 1x evening
Sulforapahne (Greenwoods 400 mcg capsule) 1x morning and 1x evenin
Optimised Curcumin Extract (LONGVIDA RD 500mg capsule) 1x morning
Mega Green Tea Extract  (LifeExtension 725mg capsule)1x morning
Optimized Resveratrol (LifeExtension 250mg capsule) 1x morning
Zinc (Solgar 50mg tablet) 1x morning
Selenium (Solgar 200mcg tablet) 1x morning
Senna (Senokot - Reckitt Benckiser, 154mg tablet), 1-2 as required, evening, taken only to offset Anti-Sick tablet (Ondansetron) constipation.
Melotonin (Eurovital 10mg tablet) 1x evening

We would welcome any suggestions of anything we should be adding or removing from our list. Things I am considering adding are:  Sildenafil (viagra), Disulfiram (Antabuse), Tagamet (cimetidine), DCA (dichloroacetate). Most of these we would have to try and get the GP to prescribe or find alternative ways of getting hold of.

If anyone has recommendations of what we should be doing or discussing with oncologist post chemo that would be welcome too.



Update (03/05/2017):  we added cimetidine Jan 2017, Dad has finished 6 months of  Temozolomide and is no longer taking Ondansetron or Senna.


  1. Looks good, although many of the doses seem to be on the low side.

    The lowest dose of Celebrex I've seen used in GBM studies is 200 mg once daily.

    Clinical trials of chloroquine for GBM have used 150 mg daily (the equivalent of 250 mg chloroquine phosphate daily).

    Recommended therapuetic doses of vitamin D3, especially for people in northern climates, are in the 5000- 10000 IU range.

    I'm not sure about the UK, but cimetidine in north america can be purchased over the counter. DCA can also be purchased without prescription (

  2. Hi Everyone,

    Thanks Stephen for your comment. We really appreciate the support you and everyone on this site give us and it is very useful reading everyones experiences and research. In response Stephen, to your comment about low doses, Dad prefers it that way as he is slightly worried about overloading and is already taking quite a lot of tablets everyday. We have just managed to get hold of some cimetidine and are now adding that in.

    Dad had another MRI just before Christmas, we haven't had official results yet, but at the last appointment, the oncologist briefly compared to the previous scan and there was no obvious change. Dad will have his last chemo round (6 of 6) next month and it sounds like there will be no further treatment, just scans every three months for the next year. We are wondering how long people continue on the cocktail regime past chemo, if there has not been recurrence? I am thinking we should try and maintain our current cocktail regime for at least 6 months, perhaps the next 1 or 2 years. Then after that if there is no change perhaps reduce the regime down to something considered as a maintenance regime.

    Best wishes to all,