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GBM 4

Sharron
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This is the very simplified version : My husband collapsed last Sept 15 after a seizure and many months of migraines.  He was taken into hospital to which he then had a biopsyand and diagnosed with GBM Grade 4. Due to the location of the tumour we were told surgery was not an option, he was given intense Radiotherapy with combined Chemo and at that point we were told the tumour had not shrunk but neither grown, therefore he was to under take another round of chemo taking us to March this year.  The last scan showed his tumour had started to progress and had become immune to this type of chemo.  His Oncologist suggested trying PCV but also said 'the results are not great and this is the time, we suggest you contact relatives you haven't seen for a long time' ,and we were told '' surgery was not an option '. 

We all know the NHS has financial restraints , but we could not just sit back and wait for this to happen, (I need to point our we are far from wealthy), we starting investigating via the private route with the hope of being told ' this drug would help your husband' and  the intention would be we would then look to source the treatment outside of the EU at hopefully a reasonable cost.

Our private investigations took us to Harley Street and we were shocked to be told that surgery was possible !!!!, and may be even able to get the tumour completely out !!!! the surgery cost was far better than we expected and we are fund raising to raise the amount.  The after care suggestion was Avastin and its here we are hitting scary numbers, approx £6k a month. 

1.Can anyone help direct us to who can offer privately Avastin, so we can make contact ? I am sure you understand cost is an issue and a very big concern.  We have not been married a year yet and I have no intention of loosing him x

2. Immunotherapy we were told was approx £150k but a great option, anoyone found it cheaper ? Is immunotherapy an after treatment rather during surgery ?

3. Also now Surgery is an option, what does anyone know about Gliadel Wafers ? Cost and success ?

I am knew to forums, so hope this all makes sense

Thanks for any help you can offer

Sharron

 

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    Hello Sharron,

    Thanks for sharing your story. I just wanted to let you know that I have asked our cancer nurses to comment on your post and they will respond to your message very soon.

    I hope you will also hear from some of our members who have had experience of private treatment. They may be able to advise you and share their story with you. 

    Best wishes,

    Lucie, Cancer Chat Moderator

  • Hello Sharron

    What a difficult time you have been going through.  Often there are no clear cut answers in situations like your husband’s, but I hope the following information helps to shed some light on some of the issues you have raised.

    Sometimes there can be differences of opinion between doctors about whether a specific treatment option is likely to be helpful.  To get some clarity it would be good to ask the doctor who has said that they would be happy to try surgery what the best and worst outcome are likely to be, taking into account your husband’s specific circumstances and how likely they think it is that they will be able to get a good result.

    As far as I can find out, Avastin doesn’t have a license in Europe for the treatment of brain tumours.  Drugs need to be given a licence by the European Drugs Agency before they can be prescribed for a particular condition.  They make their decisions based on the strength of evidence from clinical trials rather than cost effectiveness.  Although the Food and Drug Administration in the USA think there might be enough evidence of effect to approve its use for brain tumours in the USA, in Europe it is believed that the evidence for using Avastin in brain tumours isn’t clear enough.  There is more information about this on the Brain Tumour Charity’s website here     

    Once a drug receives a license, it then gets assessed by NICE in the UK who look at how much of a difference it makes to survival to decide which conditions it should be routinely prescribed for on the NHS

    Because Avastin isn’t licensed for treating brain tumours, many doctors would not be prepared to prescribe it in the UK for a brain tumour either privately or on the NHS.  However some might be prepared to, and could get access to is as it is available in the UK for other conditions. 

    I understand from your post that the Harley Street doctor you saw would be prepared to prescribe it.  The cost of it will be set by the drug company so I don’t think trying other private consultants in the UK would reduce costs much for you.  Any variation in price is likely to be based on differing charges for care during treatment with it, rather than the cost of the drug itself.

    There are immunotherapies that are looking like they might show promise in brain tumours, but as far as I know they are still in trials at the moment as the doctors don’t yet know if they are effective.  So it may not be possible to get these outside of a trial.  It might be helpful to ask your husband’s doctor if there are any suitable trials he could get on. Usually these therapies would be given after surgery rather than during it.  There is a summary of the research that is going on in Brain tumours here

    Gliadel wafers have shown some impact on newly diagnosed brain tumours after initial surgery to remove them and in this situation are approved by NICE.  They are licensed for use in recurrent glioma after surgery but the evidence of their effectiveness in this situation is less clear.  However, it is believed that they may help some patients live a little longer.  I am afraid I have been unable to find out the cost of these.

    I hope that this has been helpful

    Martin

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    Hi Sharron, I'm new to this site and this is my first post so hope it makes sense..... Firstly I'd like to say I'm so sorry you and your husband are going through this horrible diagnosis - I really feel your pain, as me and my husband to be (in 11 days time) are in exactly the same place :-( Dale was diagnosed in May this year with Grade 4 GBM following a one off seizure - 6 days after his 55th birthday. We were originally told they would remove the tumour but then the day before surgery, following an MRI, they decided not to operate as the tumour had gone down into the brain. He has since had 6 weeks of radiotherapy and chemo (150g daily Temozolomide) and is now on 300g per day of the same chemo for 5 days each month. From what I've read this is a standard treatment plan and like you we are pinning our hopes on it but I am fearful of the future. We are considering asking for a second opinion tbh - I keep wondering why they couldn't do a partial removal of what tumour was there before it went deeper and at least give the radiotherapy and chemo less to attack!!! We were told there is no evidence that size of tumour matters to the outcome of treatment but now I am constantly wondering if this is actually the case!!! I would love to hear how you're getting on and if you've had surgery or not. we're planning on waiting till the 6 sessions of chemo is complete in March next year unless something becomes too good to refuse in the meantime. I hope your husband is currently well and you are both coping - life is a roller coaster of emotions for us but we are strong and love each other to bits which helps. Take Care - Gill xx
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    hi sharron    ,how are things there with your husband ?.

  • Offline in reply to Gillyb

    hi gillyb,    my dads gb  has been de bulked, and had radiotherapy and on chemo pills now till jan,  hes doing well at the moment. but we are told, that this type of brain tumour in  not survivable. and in time all  eventually pass.

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