Hi again all
It is also worth looking into Boswellia Serrata (Frankincense) to help with brain swelling/weaning off dex. There are many links to research, below just one. As I feel one should with all supplements, we ran Boswellia past my husband's oncologist, and the hospital pharmacy staff - they are fine with it.
It has never occurred to me to buy a supplement, since curcumin is in Turmeric powder (ie the ground turmeric root) and you can buy that anywhere - careful though, as it stains a nice yellow on worktops, fingers and clothing! Piperine is in black pepper (fresh ground) so just add a good sprinkling to the powder, mix with a good oil (it's a great opportunity to have some of those oils like flax or olive which are not ...
Hi all. My husband's been having ground turmeric powder mixed with black pepper and flax oil since he came home from surgery. No side effects whatsoever .... and to find out more about the reasons why it's effective, you might want to have a look at Dr David Servan-Schreiber's book "Anti-cancer - a new way of life" for more info and inspiration.
Hello all! In our part of the UK Avastin is not approved for GBMs but I have read through all the posts in this thread (my new hobby!) and am interested to hear about the over-medication issue. My husband has recently been put on Keppra ... started off 500 mg per day, now on 750 mg per day, the idea being to settle on a dose of 1000 mg per day in a few weeks time. He seems more tired and bleary=eyed already...
There is a trial here for recurring GBM when treatment has already taken place:
Immunotherapy using a poliovirus vaccine:http://clinicaltrials.gov/ct2/show/NCT01491893
And heat shock protein vaccine:
I am not sure what phase these two trials are at - probably just Phase 1/2 :-( but if anyone has more info, or even first hand experience of vaccine trials I'd be interested...
A great question RobinMB - I will make sure I follow this one! (Though I know that trials in the UK and Europe won't be the same as those in the US and elsewhere). I have asked my husband's oncologist of course, she said 'nothing available at the moment'. I will just ask the tumour to take a back seat then, while a trial for a treatment that WORKS comes along :-D
Pseudoprogression is the appearance of something on an MRI scan or CT scan which looks like it COULD be tumour progression, but it not - I don't know whether that 'something' in itself could cause symtpoms. It's so hard not being able to see whats' going on......!
Hi there and so sorry to hear about your diagnosis. The procedure at my husband's cancer treatment centre (an excellent facility but not a specialist brain tumour centre) is do diagnostic scans pre-surgery (obviously!), immediately post-surgery, and then not till the 6 cycles of adjuvant Temodar taken place. There are 'planning' scans done as part of the radiotherapy and mask preparation, but these are not for diagno...
Hi Sarah & everyone. I am so sorry to hear this and from your later posts it sounds like things are improving. My husband had one grand mal seizure the day before his GBM surgery back in November and was not put on anti-seizure meds because it was felt that the 'reason' for the seizure - the tumour - had been removed. Then just last week, out of the blue,he had a partial seizure - spasms and shaking but no ...
Hello there. My husband had his craniotomy (for GBM) in Nov 12, and he was recovering well and off the post-surgery steroids..... but within days of starting the Temo + radio, his symptoms returned, and so he was given 8mg of steroids - they worked! but we tapered that dose down to around 5mg/4mg during radiotherapy and now he's on just 0.5 mg daily. Yes, he experiences symptoms (mobility problems in his case) b...
Husband has completed 6 week Temodar + radiotherapy
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