Looking for a free-thinking Neuro Oncologist in the UK for a second opinion. Any suggestions?

Hi there

Can anyone recommend a good private (or even better NHS) neuro-oncologist or oncologist in the UK who is willing to think outside the box and support the cocktail approach? If I find the right person I might transfer my treatment over to them, so ideally they would be Leeds-based. My current oncologist in Leeds (where I live) is unfortunately not very helpful and doesn't support the cocktail approach at all. I want to try thyroid hormone T4 suppression with methimazole and cytomel (synthetic T3 hormone) alongside radiotherapy (although it is probably too late for that now, as I resume this afternoon) and other treatments. 

As a bit of background I am a 29 year old male, first diagnosed in June 2015 with a grade 2 diffuse astrocytoma. I was encouraged to do a year of Temzolomide chemotherapy to shrink the tumour and then hopefully they could operate. However since August of this year a scan indicated that the tumour had changed and become more aggressive. They recommended radiotherapy but during this the tumour became more aggressive and I was getting terrible headaches and vomiting. They ordered an emergency MRI scan to see what was happening and I was told that I needed emergency surgery to relieve pressure and try and debulk the tumour. A biopsy following surgery showed that my tumour has become a grade 4 Glioblastoma Multiforme. My current plan is to finish off the last ten days of the radiotherapy beginning today, and will then pursue some kind of chemo - either more Temozolomide or PCV. I want a second opinion because more Temozolomide doesn't seem to be an approach supported by the evidence. 

Any suggestions gratefully received!

Many thanks

Liam Raftery

First MRI. Tmz or avastin?

Hi, all!
I need advise about what to do...
First mri of my husband Vadym is 1 month afret radiotherapy with chemo.
Ans about this mri there are different opinions of NO.
First opinion is there are radiation gliosis and we have to start our first cours of TMZ. ( neurosurgeons).
Second opinion is tumor is growing and we have to start avastin 5 mg/kg per day,  and after 4 injections we have to repead mri ( experianced NO).

We have no analisys of tumor ( methylation).
We were going to make first cours of tmz and after go to Germany for immunotherapy and so on.
May i ask about opinions about our situation?
Tania.

Chemo-Radiotherapy failed: Recurrence

All -

Mom's tumor has recurred in multiple areas in the operating bed right in the middle of first round of chemo and radiation. We had started her cocktail as well. Doctors have stopped chemo and radiation, calling it failure.

I need to decide on the next possible treatment option. We are still waiting for her genetic report. But this news is a huge setback as it does not leave time for us to try various things over a longer period of time. Surgery will not be feasible. I believe doctors will be cooperative in letting us avail of other treatments on compassionate use basis as well. But something probably needs to work more immediately now.

Please advise what options we should be pursuing here in US or in Germany.

best,
Jinesh