Friday, 9 June 2017

suspected progression/leptomeningial disease

Dear all,
Just after NED MRI end of March, the third dendritic vaccine/Keytruda/vesanoid my son was hospitalized and the MRI shows  possible progression. Is it at all possible this could be pseudo progression? We know how hopeless leptomeningial disease is, but does anyone know of any trials? Any ideas are greatly appreciated.


  1. There is a research for that cases. For example "A preliminary quantitative proteomic analysis of glioblastoma pseudoprogression" ( says that if you have CDH2 less than normal, than you've got more chances to catch pseudoprogression on MRI.

    I think we had fallen into that case with my wife Daria (she got white spots in the bed of resected tumor after 3 months from resection but they are "cold" and dark on perfusion MRI).

  2. The iRANO criteria, published in 2015 by Okada et al, help a lot in understanding immune-mediated pseudoprogression versus real progression. The paper also provides a flow chart to help decision-making. This paper is free accessible.

  3. I am so sorry to hear this. I was impressed by your treatment plan.
    Is he declining? Maybe Optune or perillyl alcohol?

    1. no so much - he is very alert ( just got 1560 on his SAT!) , just dizzy and some backpain. we looked into Optune, but it is out due to the location of the tumor. Now they are saying just spine radiation and perhaps some clinical trials.

    2. perillyl alcohol, you are right, didnt think of it! thanks! Do you have an idea where we might get it ( US or Europe?) Thanks!

    3. Hi Olga
      so sorry to hear. I think you have been to IOZK? - I believe they can offer it there.
      best of luck
      Anne Marie