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Diagnosed Nov 26, 2019 - Grade IV Glioblastoma

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  • Diagnosed Nov 26, 2019 - Grade IV Glioblastoma

    My mother was recently diagnosed with Grade IV Glioblastoma very recently. She went to the ER with a horrible headache, and a scan revealed she had a major brain hemorrhage. She was rushed to St. Luke's hospital in Milwaukee and after about 4-5 CT scans and an MRI they finally did surgery (24hrs+ later) to remove the mass and relieve the pressure on her brain. It's only Dec 9th now, but she has recovered amazingly well. She can walk and talk and just about everything fairly normally, but I know there is a long road ahead. She'd had aneurysm surgery just over a year ago, where they put coils in the aneurysm, and everything was looking great. She had a follow-up CT scan for that condition just 2 months prior and there was no sign of cancer at that point. So this thing came on very fast. Also, one of her brothers died of brain cancer in 2007. So I am aware of the prognosis and that we need to act fast with any treatment.

    We have our first post-op meeting with the team of oncologists at St. Luke's tomorrow morning. What questions should I be asking? I have been reading up on this as much as I can but it's overwhelming. I guess I should ask if it's "methylated"? And I think that answer is important because some meds work better or less-well when the tumor is "methylated". Is that correct?

    My mom is very eager to try the latest and greatest treatments, whatever that may be. And it sounds like there are a lot of promising developments ... but nothing sure-fire yet. At this point, with this high-grade of a glioblastoma, what is her best bet? Should we even bother with the standard awful treatments of chemo and radiation? Doesn't that make you horribly sick? Should we just jump straight to a clinical trial with a virus immunotherapy type thing? Or fly to Lithuania as one poster suggested? Or Japan?

    Sorry, my mind is all over the place with this. Where do we start? What questions should I ask these doctors tomorrow? Where is the best place for a second opinion? I'm thinking Northwestern University in Chicago, as that's where I live.

    Thank you for any comments.


  • #2
    The standard is worth trying if she has mgmt methylated and you consider optune as part of the standard. Some doctors do consider optune as standard treatment and others don’t.
    If mgmt is unmethylated I would jump into a clinical trial.
    Another option is an immunotherapy trial like the survaxm trial
    Any of the other vaccine or viral trials are worthwhile. We don’t know which is best yet


    • #3
      After our first post-op conference with the doctors we now know that here is methylated, which I understand makes it more likely to respond to the standard radiation/chemo treatment. I'm looking into available clinical trials now. Can you tell me the difference between immunotherapy vs viral vs vaccine theraphy? I soft of thought those were all the same thing.


      • #4
        They are all types of immunotherapy
        look at the recent videos in our library. Click on interact then video library.


        • #5
          They did let me know that mine was methylated on that first pst op visit and I got a high five for that. It does predict a better response to the chemo/radiation Standard of care. I was not offered any trials at that visit. I will be using optune! I had found that myself and was going to ask about it but they beat me to it. As for side effects to the chemo/radiation...It's only been a week but I'm not having any. Not everyone does. I too am open to immunotherapy and am eagerly and diligently looking into trials. In 5 more weeks I'll be on my rest period and hopefully have more information about things that can be an add on to the optune and the second phase of TMZ. Pleas keep me in your loop and let me know about your mother's decisions along her journey.


          • #6
            The survaxm trial is no longer recruiting and phase 2 has ended. Final results are due in May, 2020.


            • #7
              I talked to the doctor running the trial on Friday. He said it will open very soon.


              • #8
                My mother will be starting radiation and chemo therapy next week. And will do the Optune therapy immediately after. To my surprise she is fine with shaving her head every three days and is getting fitted for a wig today! I will keep my eye on that survaxm trial. One prominent doc also said that pretty much all of the immunotherapy trials are closing down now because in the larger testing groups (later phases) they just aren't seeing any benefit over the current standard of care. As she put it, 20 years of research down the drain. One hopeful thing she pointed out is that my mom's cancer is 61% methylated which she said was very high, indicating her tumor should respond to radiation pretty well. So here's fingers crossed...


                • #9
                  Methylated mgmt tumors respond better to temodar
                  That is good for your mom.

                  I think the immunotherapy trials are failing because the designs of the trials are wrong they are interpreting the results wrong and they are not using them in the right ways.
                  for example the tocagen trial failed after great early results. Turns out the patients in this trial stopped the 5 fc at the first sign of progression which resulted in patients stopping too soon. They averaged 2 rounds of 5fc.
                  however the way most immunotherapy work caused swelling and changes on the mri that looks like early progression. I know of a few long term survivors from the early trial who had what looked like progression early but it was pseudprogression and they continued the 5fc
                  perhaps if the patients in the current trial were allowed to continue until second progression it would have worked

                  another example is the ict107 trial. Overall it did not change median survival because only 25% of the patients did well. But for those 25% it worked miracles. But since the median didn’t move it was deemed a failure and discarded.


                  • #10
                    I'm sure anyone with a glioblastoma would take that 25% chance! If a person wanted to try a drug like ict107 that had been used in a "failed" trial - is it possible? I'm just curious how this sort of thing works. Since my mom is going ahead with the normal standard of care treatment, I'm trying to get ahead and learn about the possibilities after that is over...


                    • #11
                      ict107 was sold to another company - I asked if they will be trying another trial and they said they are considering it but for now it is not possible to ge - it is not being manufacturered and they do not have any of it.

                      The best part about it is there were no side effects and if it were approved you could basically add it to anything else you want to try so there is no opportunity lost. I actually had a private meeting with the fda to ask oif they could approve it based on the data presented from the trial and they said no, They want another trial.