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Friday 18 November 2016

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
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11 comments:

  1. Shatteredmom18 November 2016 at 15:16

    Hi Liam, we have found our GP to be extremely helpful. My husband is on a couple of additional drugs because of his support. I went with the evidence, he reviews and gave us the prescriptions with his full support. He even fought our corner with the oncologist. Worth a try as it would be as close to home support as you could get. There is a group in London that prescribe the cocktail, can't recall the name of the top of my head, but happy to look it up if you like. Good luck with your fight fellow warrior. Hannah

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    1. Unknown20 November 2016 at 12:22

      Many thanks for your reply Hannah! I will book an appointment with my GP asap and see if they are able to help. Is your GP happy to prescribe a drug like Metformin, even if your husband doesn't have diabetes? Please could you pass me the contact details of the group in London that prescribe the cocktail? Thanks again! Liam

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    2. Hannah22 November 2016 at 02:40

      Hi Liam, Yes, our GP has been very accommodating. The Care Oncology Clinic is the place I was searching my memory for. Thankfully others have managed to post in the interim. Have you asked for the pathology report for your GBM? If you have a good idea of the genetic make up, you can try to tailor your cocktail even more accurately or get onto trials that are specific. Good luck with your fight. Stay strong.

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    3. Unknown22 November 2016 at 03:59

      Thanks Hannah! Yes I have all my pathology information and aim to tailor my cocktail accordingly, fingers crossed. Good luck in your fight also! Best wishes. Liam

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  2. Matthew Evans18 November 2016 at 17:09

    Dear Liam
    I am in London.
    Try this group:

    http://careoncologyclinic.com

    All the very best and all my best wishes
    Matt

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    1. Unknown20 November 2016 at 12:23

      Many thanks Matt! I have emailed them and will try calling them during the week if they don't get back to me. Cheers again. Liam

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    2. Anne Marie21 November 2016 at 11:35

      Hi Liam
      we have had the same experience with oncologist - it's Stupp or nothing. We use the care oncology clinic and our wonderful GP is happy to prescribe metformin and the other meds they recommend.

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    3. Unknown22 November 2016 at 01:59

      Thanks for your reply Anne Marie! I'm glad to hear you have found a way of obtaining the drugs you need. I have contacted the Care Oncology Clinic and am waiting to hear back from them. Just wondering what you mean by "it's Stupp or nothing?" Many thanks! Liam

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    4. Stephen W22 November 2016 at 06:45

      "Stupp" simply refers here to the standard of care (radiation + daily temozolomide, followed by 6-12 months of 5/23 temozolomide, named after Roger Stupp, the clinician who led the pivotal phase 3 trial that established this regimen.

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  3. SVG18 November 2016 at 22:24

    In Germany, a lot attention is given to methadon in these days, to add to Temozolomide.
    Temozolomide is active when MGMT is methylated. Do you have this data analyzed on your tumor ?
    Immunotherapy immediately after radiotherapy eventually in combination with maintenance temozolomide is also to be considered.
    Good luck !

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    1. Unknown20 November 2016 at 12:31

      Thanks SVG! I believe I have MGMT methylation in my tumor, following pathology testing. Is this Stefaan Van Gool from the IOZK in Cologne? If so do you mind if I email you with a few questions to your iozk email address? We have had some previous contact re. possible immunotherapy. Many thanks again! Liam

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