Wednesday, 9 March 2016

Request for information on CUSP9v3




Hello to everybody!

First of all I want to say thank you to Stephen for accepting me on this blog, It is a very helpful source of information and I deeply hope to find a right way to cover for my sister.

Here you can find a brief clinical story of Lorena:
 https://drive.google.com/file/d/0B0UTvidNw_AwOVQ4eXFVUVIyTWM/view?usp=sharing

Within few days she will undergo a magnetic resonance, to confirm or to retract the result of the previous MRI done on January. The medical result has shown the presence of an extended edema and other distinguish hallmark of glioblastoma. But Dr. Milanesi, her radiotherapist, supports the possibility that the edema may ensue from the toxicity of the CyberKnife procedure undergone in November.

Today we succeed in getting in contact with Dr. Marc Eric Halatsch who suggests to treat Lorena the use of CUSP9v3 therapy which can be administered by any licensed physician.

Do someone have undergone on this kind of procedure?
Thank you in advance
 Simone

7 comments:

  1. This paper has some details about the drugs used in that study:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3720600/

    Even if it could be administered, physicians might be reluctant.
    Have you inquired about clinical trial options?

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  2. Where is your sister located? There are some doctors here in NYC and Vermont that may be willing to prescribe the protocol.

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    1. Shoot, I wouldn't know where you would find someone that would be willing to prescribe it but ask D. Halatsch if he can get you in touch with someone currently doing it perhaps?

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    2. Hi Simone,
      There are several authors listed on the publication above that are located in Italy:
      Francesco Cappello - University of Palermo, Palermo, Italy
      Daniele Focosi - University of Pisa, Pisa, Italy
      Iacopo Sardi - Meyer Children's Hospital, Firenze, Italy

      It looks like there are few clinical trials in Italy, but there a handful look interesting:
      https://clinicaltrials.gov/ct2/show/NCT02343406
      https://clinicaltrials.gov/ct2/show/NCT01975701
      https://clinicaltrials.gov/ct2/show/NCT01421524

      There is some good supportive data for ABT-414. If travel is possible, there are much better options in Germany. Hope this helps.

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  3. Hi Logan, can you suggest the names of few doctors who are NY based and who might be willing to prescribe this protocol? Thanks

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    1. Noha, apologies for the late reply. I didn't realize that you replied. I don't have anyone yet but I'm hoping that I will this week. I'll let you know once I find out?

      I just uploaded version 4 of the protocol to the shared drive if you want to see it.

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