Contributors

18 August - Clomipramine my best hope?

Whilst waiting for the car to arrive to take me to Carlisle I was leafing through the Radio Times and noticed something that got my interest. On Tuesday 23 August at 8pm on BBC Radio 4 there will be a programme with the title: Treating Tumours: Old Drug, New Tricks.

According to the programme synopsis: Ten years ago, researchers discovered that the out-of-fashion antidepressant drug clomipramine has apparently remarkable anti-tumour properties. What's more the treatment costs pennies, not hundreds or thousands of pounds. Yet these scientists have struggled to find anyone to back their research.

Obviously I haven't heard the programme yet, but a quick bit of Googling on my smartphone turned up enough information to get quite excited. The Canceractive web page on using Clomipramine to treat brain tumours suggests this drug has very positive benefits in treating the aggressive glioblastoma multiforme tumour that the doctors claim I have. Of all the alternative therapies I've read about or people have told me about, Clomipramine seems to offer the best chance of beating the tumour and extending my life.
  • It kills brain tumour cells whilst sparing normal brain tissue.
  • It is an old drug so a lot is already known about its side effects: which are mostly minor - sleepiness and a dry mouth, though there is an increased risk of seizures.
  • It is compatible with the Temozolomide chemotherapy drug that I have just started taking and can increase its effectiveness.
  • Patients who have taken Clomipramine have survived for five years whereas the usual survival rate for people with glioblastoma multiforme is only a few months.
I think I should be taking this! However Clomipramine is only available on prescription in the UK, where it is used to treat OCD sufferers and by vets to treat badly behaved dogs. So I can't nip down to Boots and buy some tablets but I could try obsessively and compulsively barking at the postman and go to the vet.

Whilst I was at Carlisle today I mentioned the Radio 4 programme to the radiologists, who all duly made a note of it. I then asked if I could see the consultant doctor to discuss the possibility of trying this drug. So we'll see what he says.

12 comments:

  1. Also known as Anafranil. Can be had from online pharmacies. Don't know how diligent your Customs agents are but I've regularly ordered certain drugs online and they got into either the U.S. or Costa Rica, no problem.

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  2. Our Customs people rip open every kit or package of radio parts I buy from the USA so they can charge tax on it, to my annoyance, though nothing I buy from China or Hong Kong on eBay ever gets looked at.

    I guess there'll be a way, even if it means Olga taking a trip to Kiev.

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  3. If your consultant or GP won't prescribe, you could try a private GP. It shouldn't cost much, but they can be more understanding.

    Good luck with it.

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  4. Go for Clomipramine!

    "I could try obsessively and compulsively barking at the postman and go to the vet"
    Ah ah... great.

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  5. Julian, I heard this radio story yesterday and thought of you. This therapy is in early trials but may be something that you would like to know more about.

    Take care-

    http://minnesota.publicradio.org/display/web/2011/08/17/brain-cancer-treatment-shows-promise/

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  6. Julian, if your Doctors stick to their oath of above all do no harm i can see no reason for them denying you this drug. Its side effects are well known so they should have no problem with that. Given your circumstances I would find it hard to believe that anyone would deny you this.
    My best wishes go out to you on beating the 'bugger'.
    73's
    Andy
    GJ7RWT

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  7. I don't know if you've seen it, but there was an English documentary on TV here a couple of weeks ago about our body clocks. There's actually mounting evidence that some cancer treatments are more effective if they're administered at the right time of day for your body to make the best use of them.

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  8. Hi

    My Dad was diagnosed with a GBM 4 braintumor 2 years ago, we didnt get the opportunity for surgery or get as far as radio/chemotherapy - the local hospital hadnt really seen a brain tumor and reacted very slowly (time is of the essence with GBM)

    By the time we'd convinced his GP to give him Clomipramine it was way too late. My personal research showed it was very worth a shot - the worst that can happen is you dont feel depressed! Get hold of some ASAP by whatever means you can

    Good luck with your treatment and i hope everything goes well

    Best Wishes

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  9. Hi there, I just came across your blog.

    Are you taking Clomipramine yet?

    My Mum was diagnosed with inoperable brain cancer (as a result of the metastasis of aggressive breast cancer a year earlier) in two places. She had radiotherapy and chemo but they told her they couldn't operate and she apparently had about six months (or so they told my Dad).

    This was quite a few years ago, at least 6 as she didn't think she'd make it to 50 and now she's 54 years old.

    She has been taking Clomipramine after finding out about it via the samantha dickson tumour trust (http://braintumourtrust.co.uk/wp/wp-content/uploads/2011/11/Clomipramine.pdf) and miraculously both tumours have totally disappeared!

    My Mum will probably take the tablets for the rest of her life which isn't ideal as they make her horrendously sleepy and she suffers from residual memory loss and due to the damage the tumours caused but she is still here so we're all very pleased with that.

    If you haven't started taking them already (sorry, haven't read the rest of your blog) then I'd highly recommend you do.

    Feel free to contact me if you want any more info.

    Best wishes

    Tara

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    Replies
    1. What dosage is your Mother taking, my Wife has brain mets and is taking 20 mg daily.
      John Kappes

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    2. I can't answer for Tara, but I am taking 200mg of clomipramine daily.

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  10. Hi Tara.

    Thank you very much for your email. Yes, I have been taking clomipramine more or less since I started the radiotherapy and have continued on the maintenance dose of 150mg ever since.

    I do feel a bit lethargic sometimes and have some problems with dizziness and trembling hands but on the plus side I sleep better than I have for years! Some days the side effects are not so bad as others and could be down to the temozolomide chemotherapy so I am hopeful that once that is over and I'm only taking clomipramine my body will adapt or we will find something to mitigate the remaining symptoms.

    Olga and I are enormously cheered to learn of your Mum's experience. Thank you very much for posting your comment. I hope you and your Mum have a great New Year.

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