Tuesday, 23 August 2016

SMPF Therapy V Novocure.

Any thoughts on which may be more effective?
I know Novocure has had more trials and data but as it needs to be used for
such a large part of the day on a shaved scalp my daughter isn't keen.
The small amount of information I have on SMPF, which is carried out in Bangalore seems quite promising.

29 comments:

  1. For those of you who had never heard of this therapy before (as I had not), here is a link:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2919998/

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  2. The main problem with basing treatment decisions on case reports is publication bias: if 100 people try a therapy and only one person benefits, guess which person's story is going to be published! That is the value of clinical trials, that everyone's "story" is included, not just those that benefit.

    Of course I would like to believe that this is a legitimate therapy for brain tumors. There is a second case reported in the news here:

    http://pharmabiz.com/NewsDetails.aspx?aid=69495&sid=2

    The skeptical side of me wants to see somebody eliminate the possibility of pseudo-progression in the first case. That is one reason many trials for recurrent glioma don't allow patients who have progressed within 3 months of completing radiation - the possibility that the "progression" is actually pseudo-progression. The patient's PET scan revealed a "hypometabolic lesion", which you would not expect in a progressive tumor.

    I don't exclude that this could be a valid therapy. It's just sometimes really difficult to separate the wheat from the chaff with all the alternative treatments out there.

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    1. I have to admit this story reported in the news sounds impressive. A 55 year old GBM patient still alive at 3 years with SPMF therapy being the only treatment reported following GBM recurrence post standard treatments. That does not happen every day.

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    2. I have been emailing a man whose son was diagnosed with DIPG in 2012. He followed the SOC and was lucky enough to get cocktail drugs from diagnosis.
      He also went to India for SMPF therapy in 2013 and 2014. Now aged 18/19yrs he is still currently doing well.
      The therapy is carried out by a company call Science Beyond Frontiers.

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    3. Joanne, I have been emailing with the same man. :)
      We are now decided to go there. Even I spoke with Dr. Vasishta on the phone. I was kind of hesitant to go there as there are bad references on mouthshut.com. But after further emails, calls and investigation we will give it a try.
      I may then report here about our experience.

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    4. Hana,
      I am trying to get scans etc sent to SBF and hope we can sort out going there soon.
      Which country are you travelling there from?

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    5. We are from Slovakia. And you?

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    6. You lucky, direct flight there ;)

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    7. Yes there are direct flights, which is good as my daughter is not able to walk unaided due to recurrence in Cerebellum. I'm hoping NO says she's still fit to fly.
      Who are you taking? Are they mobile?

      Who are you taking for treatment?

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    8. Can I ask how you got to speak to Mr Vasishta?

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    9. Hi Joanna. Am taking my husband who is 35. We do not have kids. Our oncologist refused to sing Fit to Fly. Will see if neurologist will. If not, based on fear, should we still try to get my husband there? Oncologist said that for people with progressive brain cancer it is risk. Heck, then all with recurence cannot fly?
      I asked SBF centre in email based on advice from Dave (that man we emailed with) whether I can speak with doctor. Then he called me.

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    10. And please let me know if your doctor says your doctor can fly.
      Right now my husband can walk. He has recurrence in many places, biggest one in right temporal lobe.

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    11. No the NO won't do a fit to fly letter. My daughters mobility and balance is very poor now. NO said her recurrence is diffuse, in the cerebellum, extends to brain stem. He is saying nothing they can do. I am deciding if Avastin would be a good route now? I'm also trying to get as many drugs as I can from to follow the CUSP9 trial at home.

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    12. I am sorry to hear that Joanne. We will see on Monday whether we get FTF letter. Oncologist did not want to issue that and refered us to neurologist anyway. We will see on Monday.

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  3. This is their website
    http://sbfhealthcare.com/
    They use SPMF for Osteoarthritis, Degenerative Disc Disease and Cancer but none of those provided links work. All their testimonials are for osteoarthritis. Most of the newspaper articles under 'Media' are also for osteoarthritis. There are 2 articles about brain cancer from 2011 which reports improved quality of life for brain tumour patients and 2013 where Dr Vasishta had BT patients treated with SMPF come together for 'Brain Tumour Day' doesn't say how many patients attended but claims that BT patients have survived for periods exceeding 3 years . This site has details for international patients.

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  4. US patent: https://www.google.ie/patents/US20100197993
    publications: http://sbfhealthcare.org/research/

    news:

    http://www.thejsho.com/pdf/Quantum.pdf
    - before it was called QMR therapy
    http://www.dnaindia.com/bangalore/report-how-an-eight-year-old-boy-vanquished-cancer-in-brain-1245442
    - 8 year old boy with brain stem glioma helped

    http://www.dtnext.in/Lifestyle/Wellbeing/2016/08/17234230/Centre-for-painless-arthritis-and-cancer-therapy-in.vpf
    - short news article

    http://pharmabiz.com/NewsDetails.aspx?aid=69495&sid=2
    - 55 years old with glioblastoma named Bhagavathi Perumal helped

    http://dnasyndication.com/dna/dna_english_news_and_features/SPMF-a-new-way-to-beat-brain-tumour/DNBAN68599
    - 14-years old Rohan Ganesh helped

    http://www.cytotrontreatment.com/news.htm
    - Parthasarthy Rengarajan with glioblastoma helped

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  5. Steohen W, see:

    https://www.inspire.com/Knersus/journal/information-and-hope-for-brain-cancer-patients/?group_id=200054

    Regards

    Dave

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    Replies
    1. Glad to see your son is doing so well Dave, fantastic!

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    2. Dear Stephen,
      Please give me access to Brain tumour library.Regards.Jai

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    3. Jai,
      I'll need your email address to share the library with you. My email is found on the User Information page of the blog (see tabs for pages at the top of the blog).

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  6. We are here in Bangalore. Arrived on Monday.
    My husband had MRI on tuesday (there was significant edema - so we flew with it, but thankfully nothing happened)
    He will get 2h long treatment, not 1h because the tumor got bigger. I hope they will help him. We will also stay in Ayurvedic centre (Art of Living) with wonderful gardens, special meals, peaceful place.

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  7. Hi All,
    small update: husband's treatment should end on 12th October and probably next day he will have another MRI. I hope that finally tumor starts shrinking. He is on 12mg dexamethasone, diuretics (to give us some time till treatment starts to work). Can walk and move with fingers on his left arm.

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    Replies
    1. Thanks for the update - I'm very interested in hearing how your husband fared and (of course) we hope for the best.

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  8. I will be watching for your next post as well. Best of luck.

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  9. Dear folks,
    IT WORKED :)
    MRI result is very good, smaller size, contrast much smaller, just great.
    Getting back to you with details and images later. Let us fly home, settle down.
    But, I reccomend all to contact SBF healtcare, fly to India and treat your cancers.
    They saved my husband in a last second. (My love to all who did not manage to travel in India in time.)

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    Replies
    1. So glad to hear SMPF therapy has worked for your husband.
      I so wish I had been able to get my daughter there. I still feel I've failed her for not ignoring the hospital.

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  10. Joanne,
    you have not failed.
    Am thankful my husband could walk and could take him to India.
    You did everything possible.

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