Sunday, May 22nd, 2016

Still around, no complaints or evidence of progressive disease.  I’m now a grandad three times over…2 year old Emily and 3 month old twins Jameson and Spencer.

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2 Responses to Sunday, May 22nd, 2016

  1. Ann M says:

    Enjoyed reading your journey again. I am Ann M on the list and unfortunately have been on and off years of chemo therapy as I have never been a surgical candidate for oligos.
    I have resumed chemo in 2015 for 7months; and again resumed in Aug 2016 and conitnutin.
    Thanks for sharing your story.
    By the way, you have done a fantastic story and website.

  2. John Rows says:

    A letter of hope to Glioblastoma Patients: 

    March 23, 2018

    The reason why I created this website is because my mother passed from cancer in 2009.  She had stage 4 lung cancer that spread to her brain, and GBM takes too many people. This website was the culmination of a lot of reading on brain tumors, upcoming treatments, medical journals and clinical trial descriptions that may hold a key or tangible foundational aspect to survivorship of Glioblastoma multiforme. I’m not a doctor, I am a results driven peer support advocate. I am not suggesting a specific treatment, I am indicating that storing tumors the conventional way eliminates a patient from certain treatment.

    In the US, Canada, and many parts of the world it is possible to preserve brain tumors; gliomas in liquid nitrogen (cryopreserved).

    There are several tumor lysate vaccines that are in the process of development, either in the form of clinical trial, or somewhere in the process of applying for Standard of Care. Tumor lysate vaccines have been proven effective in certain gene expressions, with around 80% of patients receiving some type of response, sometimes in the form of a complete response. These vaccines require fresh frozen tumor tissue for antigen preservation.

    The main reason why I created this website, the biggest takeaway, was to share with the world the importance of saving tumors through cryopreservation, to have an opportunity to decide if upcoming immunotherapy vaccine treatments is the right decision for them.

    Brain tumors (World Health Organization grade 3 or 4) in current hospital operating procedures are 99% of the time stored in paraffin wax, which allows a pathologist to view the cells under a microscope and to stain a slide to uncover which cells the tumor is composed of, what mutations are taking place, which cells are infiltrating the tumor, etc. This unfortunately ruins many of the antigens on the tumor cells, which are vital in creating some vaccines for glioblastoma. That is why it takes a certain amount of due diligence, convincing and determination in discussion with your neurooncologist. 

    A patient can contact a private biobank or arrange with their doctor to store the tumor with the hospital’s pathology department through cryopreservation. The tumor can then be released to the doctor and patient for vaccine creation. In at least 1 case I am aware of, unofficially 2-3 grams are required for vaccine creation.

    Generally, for any dendritic cell vaccine, the process involves mincing the tumor and mixing it with a special solution. During this time, your white blood cells from a blood draw are being developed into dendritic cells, which will be then introduced to the solution. There are several dendritic cell vaccines that are being developed, however to my knowledge they all require the tumor to be stored in the manner described above.

    I have invested time, money, and effort into storing tumors frozen for vaccine treatment in Glioblastoma and Anaplastic Astrocytoma patients. I am happy to share this information with people who thought to investigate their treatment options. Clinical testing is a huge need in medical advancement, and ethically, relaying this information is the right decision in my mind, weighing the pros and cons of allocating tumors directly into a patients personal care. This is a personal decision based on my time and effort into brain tumor treatment, and I am not directed to create this website by any organization or group that may have any aligned interests.

    There is at least 1 other treatment that does not require tumors to be stored frozen, and has had comparable results, albeit in an earlier Phase 1 trial. Tocagen is testing a therapy that creates an immunotherapeutic effect on the patient, with a handful of multiple Complete Responses. I do not have any copyright permission to discuss specifics, but information is available on their website and I would recommend visiting their webpage for any developments in their technology.

    Even preservation of frozen tumors, creating a vaccine, enrolling in a Tocagen trial, there will still be painful stories, ultimate sacrifices and unfair consequences. Storing tumors frozen will give a patient time to investigate if vaccine therapy works for them. Gene Expression is an initial indicator as to who will respond to vaccine mono-therapies. Various reports on current vaccine successes and limitations will be available for doctor referrals and patient advocate follow ups in future months and years. Initial indications speak to these gene expressions; Mesenchymal, Neural, Proneural, and Classical. In success and failure terms, these expressions divide patients into complete responders, partial responders, and non-responders.
    My advice to the world is to store tumors frozen with the hospital or private biobank, and learn about your tumors gene expression. In many scholarly articles it indicates it is the biggest prognostic factor.

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