Sunday 5 November 2017

Immunotherapy at IOZK Cologne

Hello all,

My 38 year old brother has been diagnosed with a Glioblastoma six weeks ago. Since then he has had total surgical resection and is currently finishing his second week of temodar and radiation. He has also added quite an extensive amount of additional medication as a cocktail approach (I am sure that he will write a more detailed post about the drugs he is taking, when he finds the time). We have found the information in this blog to be extremely helpful. Thanks a lot to Stephen and all of you participating in this great resource.

Right now we are thinking about additional options for the time after his chemo/radiation phase. One thing that we are quite interested in is immunotherapy. Unfortunately my brother’s resected tumor tissue hasn’t been frozen but conserved in paraffin so that options are somewhat limited. We have contacted IOZK in cologne and they have said that they could produce a vaccine without the tumor tissue, using only a blood sample. Cologne is not too far from where we live.

I have read various comments, in this blog, about the IOZK clinic and I know that some of you have been, or have had family members being treated there. I would be very grateful if you could tell me about your experience with the clinic and whether you would recommend giving it a try.

Thanks!


Phil
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18 comments:

  1. Matjaz6 November 2017 at 23:27

    Hello Phil,

    you can see all the posts on this blog if you click on IOZK_clinic label (http://btcocktails.blogspot.si/search/label/IOZK_clinic).

    I think mrs. Alison Farmer's relative is being treated there and if I remember correctly they were very satisfied with IOZK.

    Did you maybe also consider other additional options, like adding CCNU to TMZ? There is also a trial opened in France, *similar* to Toca511 which had some pretty nice results so far. I don't know inclusion criteria or if entering such trial would exclude you from other future trials, but it may be worth checking.

    Do you have any pathology results?

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  2. Phil7 November 2017 at 12:15

    Hello Matjaz,

    thanks for your answer. I saw the comments about IOZK in the blog, but I was hoping for some further information.

    The tumor is IDH1 mutated. The NO proposed CCNU to TMZ, had the tumor been MGMT methylated, but unfortunatly it turned out to be MGMT non methylated.
    The trial in france seems to be for patients showing an unequivocal progression after at least the first line standard of care, at least 3 months after the completion of radiotherapy, but we will keep it in mind.



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  3. Matjaz8 November 2017 at 01:21

    I don't know if there is anyone on this blog besides Alison's mother being treated at IOZK and probably she doesn't read it that often.

    I'm just brainstorming here...maybe check BGB-290 (PARP inhibitor), which may work for IDH1 mutated and MGMT unmethylated in combination with chemo - but I think trials are unfortunately only in USA.

    It has also been mentioned here that IDH1 mutated gliomas have higher immunesupression due to overproduction of 2-HG. Maybe if you decide to go with IOZK immunotherapy, you could also try signing up for mutant IDH1 inhibitor trials. But I don't know if that would be allowed while being in a trial.

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    1. Stephen W8 November 2017 at 09:47

      Combining immune therapy with a mutant IDH1 inhibitor would be very interesting. The problem is I very much doubt any clinical trial would allow simultanous treatment with experimental immunotherapy. Once approved, the mutant IDH inhibitors could then be used outside of trials. Enasidenib is approved (mut IDH2 inhibitor), but ivosidenib (mut IDH1 inhibitor) and other inhibitors are not yet approved.

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    2. Phil8 November 2017 at 12:08

      Thanks for the input! I have had a look at the trials but inclusion criteria is either no previous treatment for GB except surgery or progressive disease at least two months after first line treatment. Since he is currently being treated with radio/chemo, this excludes him.
      Anyway I am interested in the idea and will be sure to follow up on new information concerning BGB-290, ivosidenib and possible other IDH1 inhibitors.

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    3. SVG11 November 2017 at 06:02

      IOZK can treat patients on an individual basis outside clinical trial. This is called "individueller Heilversuch". So such combination is perfect possible and should be discussed there. The challenge might be to get the drugs there.

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  4. Matjaz9 November 2017 at 02:47

    Interesting read on this topic:

    IDH mutational status and the immune system in gliomas: a tale of two tumors?
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5669623/

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  5. Phil9 November 2017 at 12:42

    Indeed, very interesting!

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    1. SVG11 November 2017 at 06:15

      One element that is completely forgotten in the paper from Choi et al, is that the efficacy of checkpoint blockers is only there if there is an existing immune response against the tumor. In most brain tumors, and maybe (or not ?) even more in IDH mutants, there is NO spontaneous antitumoral immune response present. That is one of the reasons why the studies with the checkpoint blockers (they call that immunotherapy but is is just immunomodulation) were dissapointing. So in order to obtain the maximal effects from checkpoint blockers, one should first induce with active vaccination strategies such immune response, and then further modulate (strengthen) their effector arm by modulation of the tumor microenvironment. In this regard, not only checkpoint blockers are important. The paper mentions also myeloid derived suppressor cells and regulatory T cells. On a per patient basis, all these elements should be looked for in the design of the optimal effective multimodal immunotherapy strategy. This is certainly a focus of attention at IOZK.

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  6. JuhaH11 November 2017 at 22:03

    Hello SVG,

    I understand that IOZK treats patients on individual basis, but do you have any published data on treatment efficacy?

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  7. Phil12 November 2017 at 02:29

    Thanks for your reply, SVG. My brother is going to have an appointment at IOZK soon. We are looking forward to discussing possible treatment options.

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  8. JuhaH14 November 2017 at 22:13

    SVG:... and also, have you seen difference in response rates between IDH1mut/non-mut ?

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  9. Unknown17 November 2017 at 09:42

    hey phil, my brother is currently doing treatment there and the doctors, nurses & staff - in particular dr. van gool - have been amazing. van gool gets back to me straight away! and they've already said if the immunotherapy doesn't work for my brother, they have other options. they seem to keep up to date with what's going on. but van gool as a doctor is fantastic. he's very thorough. but our experience with IOZK has been great. very supportive of almost everything you do - even outside of their treatments. hope this helps! giulia

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  10. Phil17 November 2017 at 11:20

    Hey Giulia,

    Thanks for your kind reply. That sounds very promising. I wish your brother all the best for his treatment! My brother has had a meeting at IOZK and had a very good impression, too.

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    1. Unknown18 November 2017 at 08:52

      Thanks Phil! I wish you all the best for your brother too. Also if your brother needs anyone to speak to, my uncles great. He survived a GB 20 years ago and he's still going strong! A real inspiration! All the best!

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  11. Phil19 November 2017 at 10:48

    Impressive! All the best to you, too!

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  12. JuhaH28 November 2017 at 10:57

    Some discussion on German clinics here: https://www.inspire.com/groups/american-brain-tumor-association/discussion/gbm-choose-between-iozk-and-prof-nessulhut-clinic-in-germany/

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