Hi Everyone,
Just wanted to post an update from my Dad and I since a fair bit has happened the past couple of months since he finished the 6 rounds of TMZ (in Jan this year). So in June (14 months post diagnosis) Dad’s MRI showed regrowth approx 40mm wide in a region deeper and close to the original GBM site. He had a 2nd resection at the end of July using 5-ALA and the surgeons have told us they managed to get 95% out, the last bit was attached to a blood supply so they didn't want to risk removing it. He is doing well and thankfully hasn't had any effects from the surgery other than being a bit tired. The team looking after him have recommended him going back on the TMZ as he seemed to do well while he was on it, which they will start at the end of this month providing his scar has healed well.
Since my last post we added Cimetidine and I have recently managed to get Dad to up the Chloroquine to half a table per day (but he is still worried about the potential seizure risk). I am working on him to take the full 250mg per day. I am concerned that since we have had regrowth the tumour that is still there is becoming resistant to our efforts both in terms of the TMZ and all the additional prescription/supplements we have been taking and wondering if we should be increasing/changing the cocktail. We welcome any thoughts on going back to TMZ and what more we can do.
Thanks,
Sam
(Link to our previous posts)
Updated list of what Dad is taking (TMZ etc will be added from end of Aug):
Prescription by special request:
Celebrex (Pfizer 100mg capsule) 1x morning
Chloroquine (Avloclor - Alliance Pharma 250mg tablet) 1/2 tablet every day in morning (available off prescription), GP recommended dosage as higher could cause fitting.Cholecalciferol 800IU (Fultium D3 - MA Hodder Internis, equiv. to 20 micrograms Vitamin D), 1x capsule in morning (available off prescription under other brands)Levetiracetam (Keppra 500mg tablet) 1x morning and 1x evening.
Additional Supplements:
Cannabinoids (CBD Brothers CBD Oil Blue Edition) 4x drops under tongue 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
Cruciferous Vegetable Extract (LifeExtension 400mg capsule )1x morning and 1x evening
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
Cimetidine 200mg tablet from Jan 2017 1x morning and 1x evening
Melotonin (Eurovital 10mg tablet) 2x evening
Was there any genetic testing on the tumor resected in July? MGMT methylation status? EGFR status?
ReplyDeleteNot yet, Dad will ask when he sees the oncologist this coming Wednesday. Will post here when we find out.
ReplyDeleteWe didn't get any useful information from the oncologist, in the UK they don't do many of the tests as standard. They just said histology was the same as before - which I guess just means it is GBM.
ReplyDeleteThat might depend on the hospital. I've seen several pathology reports from the UK where MGMT methylation and EGFR amplification were tested.
DeleteThese reports were produced at University College London Hospitals (Sebastian Brandner neuropathologist) and King's College Hospital.
Make sure you request copies of all reports, if you haven't already. And if they really didn't do this testing, maybe ask if it could be sent to London for testing there.
Hi Sam, my sister is just starting on this journey and I've been doing a lot of research and trying to learn from others who have had good success. Just so you know it's not my own experience. You may want to check if any of the supplements have magnesium stearate in them which inhibits absorption. Also, some of the supplements can be useful at higher doses. For instance, Boswellia was shown in labs to have a beneficial effect at 3600 or 4200mg/day. And curcumin 8gr/day, heated in oil or ghee with pepper.
ReplyDeleteOther supplements my sister is trying is Black seed oil (nigella sativa) 2 teaspoon 2x/day with 1 teaspoon manuka honey before breakfast
2 cloves raw garlic/day. Chop, leave it for 10 minutes then use it in salad, guacamole, or some other food.
PSK - Turkey Tail
6 grams/day - 4 capsules/ 3x/day (Breakfast, Lunch, Dinner)
or
3 gram per day plus 1 Tab. tincture (2 capsules 3x/day)
Best of luck!
Thanks for your comments guys. Stephen I will talk to my Dad and see what more we can find out. Tomatodance, we are already taking PSK (the Orivida product in our list). But I have just found a more potent boswellia online which will bring him up to the equivalent of 3500mg per day which I will get him next.
ReplyDelete