Saturday, 7 January 2017

dendridic vaccine plus virus

Dear all,
we are planning on getting the vaccine with Van Gool for my 17-year old pretty soon. I know he is using  Newcastle virus with it, but I wonder if this would be the most effective/aggressive option. I have seen mixed reports on its efficacy, so I wonder if tetanus shot or Hilton would be a better option to add to the vaccine. From what I read, tetanus seems a lot more effective. As much as I trust Van Gool's expertise, I still can't fully put my faith into any one treatment if there is a possibility of something working better. I am sure Van Gool would insist on his approach, but I wonder if this is because he truly believes it is better tan others ( such as tetanus) or because this is the only protocol they use at the moment. Would anyone have an opinion on that? Thanks!
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19 comments:

  1. Guy7 January 2017 at 12:52

    We haven't had much luck with this approach to dendretic to the point where we stopped. Feel free to email me we can discuss our experience.guybrand@me.com

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  2. Olga7 January 2017 at 15:56

    thanks, e-mailing you now!

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  3. SVG8 January 2017 at 00:28

    Because IOZK is providing personalized medicine on an individualized basis, one can re-discuss without any hesitation the Tetanus injection. Tetanus injections can easily be added. Of note, the NDV working mechanism is much more than the tetanus. 1/ NDV directly targets tumor cells thereby inducing a/ immunogenic cell death and b/ the expression of an extra tumor-located antigen. 2/ Besides, NDV is a toll-like receptor trigger in the vaccine to fully activate the dendritic cells, which this is a licensed medicinal production process. 3/ Finally NDV will "trigger" the body upon infusion. The effect of tetanus injections is only the latter. Again, one can re-discuss this with Van Gool as he aims to find for each patient the best way forward.

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    1. Olga9 January 2017 at 13:17

      Thanks! I had no idea this was the difference, so thanks for this very clear explanation.I will speak with Van Gool when we get there - I just want to be as aggressive as possible!

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  4. BrainButton9 January 2017 at 09:57

    Olga do you have fresh tumor tissue frozen?
    I am confused with all immunotheraphy treatments.
    Is Toca 5 available outside of clinical trial?
    In light of last case report from P.Roth with Nivolumab with 2 y survival after progression and trial with checkpoint inhibitors in mouse with 100% survival rate - which approach is superior? Vaccination or checkpoint inhibitors? Or both, together?

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    1. Stephen W9 January 2017 at 12:55

      In mice they are more effective together (vaccine + PD-1 inhibitor). Trials testing the combination are starting to recruit, but there is currently no human safety or efficacy data. And there is a new trial set to open in April of this year at UCLA to test the combination for recurrent GBM.

      https://clinicaltrials.gov/ct2/show/NCT03014804

      I'm not sure what the part about "autologous lung tumor vaccine" is about in the trial description, as the majority of GBM patients don't have lung tumors with which to make an autologous (which means "from the same patient") lung tumor vaccine. That is probably a mistake, but the phrase shows up numerous times in the trial description, which is confusing.

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    2. Stephen W9 January 2017 at 13:06

      Just emailed Dr. Cloughesy at UCLA to confirm whether this was a mistake or mix up in the description. Will report back here once I learn more.

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    3. Stephen W9 January 2017 at 13:16

      The references to an "autologous lung tumor vaccine" was indeed a mistake and corrections are being made to the trial description.

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    4. Olga9 January 2017 at 13:20

      Thank you so much, Stephen! Yes, we have the frozen tissue ( long and frustrating story, of course, of how we got it from our hospital). Supposedly, it was saved in the proper fashion for this.

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    5. Unknown14 January 2017 at 20:52

      Thank you Stephen W

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    6. JuhaH4 June 2017 at 04:33

      Olga/Stephen,
      Do you know if it's possible to manufacture autologous vaccine out of antigens presented in blood serum? In case of brain tumour, are there any antigens in blood serum ? I found this one publication, but still not sure if this is the case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3927555/

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  5. Anonymous13 January 2017 at 00:56

    I have been treated by IOZK and Prof Van Gool for 1 year since being diagnosed in August 2015(GBM4). The treatment style is very person centred in addition to being it seems to me at the cutting edge of where cancer treatment will inevitably end up. I put my current good health down to a very good surgeon, the excellent advice and knowledge gathering on this site and my treatment at IOZK. Most importantly for me I feel that I am an equal partner in my treatment and that is very empowering. The very best of luck for your son and maybe we will see you in the waiting room! Mark kinghorn

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    1. Olga13 January 2017 at 19:55

      Thank you! That makes me feel a lot better. We will be there the week of the 23rd, so we might see you!

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    2. Olga14 January 2017 at 18:54

      Alice, I wonder if you could tell me what you did between vaccine treatments - we are really struggling with all the decisions that need to be make. Did you continue with chemo? If you could maybe e-mail me at olgaph15@hotmail.com, I would really appreciate it!

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    3. Anne Marie15 January 2017 at 07:51

      Hi Mark
      I'm glad to hear you are doing well and your point about being an equal partner is particularly encouraging for us to hear. If I remember correctly you are in the UK? I was just wondering how you managed the travel to Germany - did you need any special insurance or confirmation you were fit to fly?
      thanks and best wishes for continued good health
      Anne Marie

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  6. Anonymous17 January 2017 at 04:46

    Hi, I was given the all clear to fly by my UK oncologist about 4 months into my treatment in Germany. until that point I travelled by train. I have no special insurance....I have no travel insurance! Mark (Alice is my daughter who did all the research to get to this site and created my treatment plan that includes IOZK). Mark

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  7. Unknown2 February 2017 at 12:26

    I just want to second Mark's comments and say that the IOZK have been a fantastic clinic for my Mum who has also been receiving treatment there (for GBM) for over a year now. Mum was unable to complete more than 4 months of chemo due to low neutrophils and has not been on Temodar since May 2016. I would also put my Mum's good health down to her neurosurgeons and to the incredible doctors at the IOZK and the cutting edge treatment they provide.

    I wish your son the best Olga and your husband too, Anne and am happy to answer any questions if I can.

    Best wishes to all,

    Alison

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    1. Olga2 February 2017 at 19:15

      Thank you, Alison! We just came back from IOZK and I completely see what you mean - I was impressed with the doctors and their treatment - a huge step above from what we are getting in the US!

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