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  • boray
    commented on 's reply
    Hi Harvey and all -- IOZK seems quite expensive (70k+ Euros) and albeit they claim to extend OS by 9 months on average, there is only type-5 evidence for this (to which they also admit). Also contacted Froceth in Lithuania but could not get a response.

    Can you also provide the details of the institution in Germany for the intratumoral injection of parvovirus and the Munich hospital that provides photodynamic therapy?

    Has anyone here had any experience with IOZK or Froceth? Would be really great to hear...

    Many thanks,

    BY

  • musella
    replied
    Originally posted by Harvey View Post
    Btw. such statements from the pathology regarding MGMT are unbelievable close minded.

    http://froceth.lt/en/medicinal-produ...immunotherapy/
    That happens a lot here in the USA for low grade glioma. But we can request it if they do not do it

    Leave a comment:


  • Harvey
    replied
    here a petition to Japanese „FDA“ to approve the therapy as soon as possible.

    If they approve it, the rest will follow more quickly (and the treatment will be available in Japan).

    Please sign, share and if possible donate

    There are some interesting comments at the petition (semi-insider Information) - you need to enable automatic translation!)

    https://www.change.org/p/%E5%8E%9A%E...81%95%E3%81%84

    Leave a comment:


  • Harvey
    replied
    https://www.change.org/p/%E5%8E%9A%E...81%95%E3%81%84

    Leave a comment:


  • Harvey
    replied
    Nobody can tell you what is the right option..especially if you don’t have recommendations from genetic analysis..

    Leave a comment:


  • Harvey
    replied
    The stakes are getting even higher if you don’t do anything..since we don’t know why some immunotherapies work on some people and on some not..I would recommend start with anything (which shouldn’t hurt you) - for example DC -vacc/ virotherapy.

    Leave a comment:


  • netopolis
    commented on 's reply
    You are absolutley right. I’m just too cautious to pick the right option. Maybe even obsessed because stakes are so high.

    Thanks Harvey!

  • Harvey
    replied
    If you are searching for proof with a certainty with 100% that something will work or won’t work you’re in the wrong business😊.

    the article I’ve sent you was the first one that popped out of google but I’m sure there are newer ones.

    But it doesn’t matter, you should concentrate on important things like getting the treatments.

    Leave a comment:


  • netopolis
    commented on 's reply
    Sorry if I sounded harsh and close-minded. I meant this:
    1. One problem of diagnosing glioma is that there is no liquid biopsy, though some methods are emerging recently but I'm not sure if they are yet used in clinical praxis.
    2. [Low sensitivity] They would need a method to extract only the tumor cells from blood. Which seems feasible but with limitations:
    ...application limits still exist, because the detection rate of CTCs is still low and was exclusively limited to high- grade gliomas...
    . which makes sense. lover grade glioma cells could also possibly be disseminated. There is a great difference in what we can do in labs to elucidate some phenomenom/mechanism and what is feasible/available as diagnostic technique in clinical praxis.
    3. [Low specificity] After such extraction quantifying PD-1 expression should be the easiest part but probably with one major caveat: PD-1 expression is variable inside tumor tissue like MGMT methylation can be so there should be a way to collect enough of tumor cells for analysis to be relevant.

    I'm not closed at all to idea that someone will come up with better technique than the theoretical one I described (there are probably very smart people working on it as I write this or even the possibility that good method exists now, but I'm having a hard time finding it, which is not unusual for me - I'm slow at such things ) but the paper you sent still isn't a proof such technique is available in clinical praxis or that it can be relevant enough.


    I went trough IOZK web page and they don't seem to claim they can detect PD-1 from brain tumor cells.

  • Harvey
    replied
    If I were you, I wouldn’t dismiss the Brain-Blood connection (PD-1) just because it’s beyond your understanding or imagination.

    Heres a basic article regarding CTCs & Glioma.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5342081/

    Leave a comment:


  • Harvey
    replied
    Virotherapy with Parvovirus is obtainable trough “patient named use” under German law. - no need to enroll in a trial. Cost may be a problem.

    Leave a comment:


  • Harvey
    replied
    Seems like the institution treating you isn’t one of the good ones. Who knows if you really have the correct pathological diagnosis.

    Maybe they purposely “lost it” because there is a high possibility of misdiagnosis and now you can’t double check them. Pitty. Did you consider your legal options?

    Btw. such statements from the pathology regarding MGMT are unbelievable close minded.

    Lithuanian clinic doesn’t do virotherapy. They do only DC Vaccination with allogeneic antigens. The company’s name is Froceth.

    http://froceth.lt/en/medicinal-produ...immunotherapy/

    Leave a comment:


  • netopolis
    commented on 's reply
    Thank you Harvey,

    I'm focusing on NW Bio because they had (and hopefully still have) compassionate use program, which I think is rare, especially for non-glioblastoma patients.

    The hospital never did MGMT methylation test because most (but not all !) IDH mutated low-grade gliomas usually have high MGMT promoter methylation so they don't test them. Unfortunately it's too late to do the test elsewhere because pathology department lost my tumor tissue.

    I'm dismissing IOZK for reasons I prefer not to disclose. Also, I couldn't find any research correlating circulating PD-1 with PD-1 expression in brain tumor tissue and I can't imagine how there could be such a correlation . If anyone knows better please correct me.

    1. I'm interested in Lithuanian clinic, do you know the name of the clinic or name of their virotherapy?
    2. Is this the therapy you are referring to https://academic.oup.com/neuro-oncol...6/vi10/5153816. If so do you have any knowledge if it can be obtained outside of clinical trials which are for glioblastoma only.
    3. I really like this suggestion. I haven't heard of the one in Munich but I remember some promising results from Japanese studies. I'll try to search for the name of the Munich hospital.

    I'm also considering enrolling in one of the current immunotherapy clinical trials in Germany but I need to have more of resectable tumor tissue to apply and neovascularization around new growth so they can be fairly confident it's not a pseudo-progression, this is another reason to wait couple of months (next MRI scheduled for mid February).

  • Harvey
    replied
    I can tell you what I would do if I would be on your place.
    Waiting for NW Bio doesn’t make sense (and it costs a huge amount of money), since you can recieve the vaccination in aprox 6 Months and immunotherapies usually need few months to really start working. Who knows what will happen in that time.

    are you mgmt methylated?

    Step 1.I would go to Lithuania or IOZK and recieve DC vaccination right away

    Step 2. I would go on to recieve neoadjuvant stereotactic Parvovirus (+Pembrolizumab depending on the pathological findings of PD-1, Mutational load, microsatelite instability. At IOZK they can analyze blood for the presence of PD-1, that means additional indication for Pembrolizumab!)

    Step 3. Tumor resection at Münich hospital with use of Photodynamic therapy for residual tumor. Sometimes they achieve excellent results.



    Leave a comment:


  • netopolis
    commented on 's reply
    Yes, a part of the tumor can be resected which is good for freezing tissue for dendritic vaccine production. Unfortunately the part that causes deficits can't be resected without making me hemiplegic.

    My neurosurgeon wants to wait few more months till I finish all the chemo cycles. I agree with him but I'm considering all the options proactively because so far SOC doesn't seem to work that well.

    One of 3 specialist I consulted still thinks there is a chance it may be pseudoprogression, he is the one with least experience, I hope he's right but doubt it because MRI spectroscopy shows metabolic signature of tumor tissue.
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