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Laser ablation and biopsy showing glioblastoma

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  • Laser ablation and biopsy showing glioblastoma

    My husband was recently diagnosed with a grade 4 glioblastoma. Seizures were first indication and saw non enhancing mass in left temporal lobe. Recently the mass enhanced and was seen to grow a bit more. The surgeon suggested a laser ablation (due to being in left temporal lobe) and biopsy which went very well. Husband is doing well at this time and on Keppra plus dexamethasone (tapering down post surgery). We are looking into clinical trials and therapies. Doctors don't seem to think much of alternative medicines. But I have started giving him turmeric (with black pepper), black seed oil, two cloves of raw garlic (and lot more cooked) etc.
    I want to add Boswelia to this (is there an issue ?).

    The current proposal is temodar and radiation (simultaneously). We are seeing alternate opinions and options. Since it was laser ablation, it is likely that there are regions around that (only the enhancing area was ablated) has cells. After the diagnosis, we are wondering if we should also do surgical resection before therapy. But we are told it might reduce QOL. Any suggestions appreciated.

    We were also told that Optune could be available (either to try during or after radiation) as part of a clinical trial here. It does seem to reduce QOL a lot and I am worried if my husband may not be able to exercise and sleep well etc and that may negatively impact his recovery. Are there other trials we could participate or consider? We are hoping for more suggestions before starting. Methylation status is not known yet.
    iDH-1 is negative. No enough tissue was available after biopsy to try dendrite cell methods.

    Since it appears from literature that laser ablation opens blood brain barrier for a few weeks, we are wondering what else we could do quickly to utilize this opportunity.

    Husband is very healthy otherwise. I read about mushroom extract etc. and want to try more such products. Too many questions here.. But hoping to hear suggestions on this.

  • #2
    I like the idea of optune during (and after) radiation. It maintains the quality of life a lot longer than not using it. It is hard to get used to the first few weeks then isn't that bad. If used at 90% compliance or better, your chances of being in good shape 5 years from now are vastly increased if you use it.
    I am not a fan of alternative treatments either. Alternative basically means "hasn't been shown to help". Once a treatment is shown to help, it is no longer alternative


    • #3
      Thanks for the response. Alternate in this case was dietary changes to extremely low carb, using a list of things like cur cumin, pepper, boswellia etc as in Ben Williams case. But also we saw that Care Oncology had a list of 4 medications they help manage which is reasons to block cancer pathways. Do you know of people on this forum who may have benefitted from this? The meds include Metformin, Statins, Mebendazole, Doxycycline which are repurposed in combination being effective against glioblastoma.


      • #4
        Our patient navigation program recommends the Care oncology protocol when we can not get access to clinical trials or experimental treatments. Some patient do very well on it. We do not have enough patients on it for long enough to tell but will publish our results as soon as we do. I like it. Strangely I just posted an article on the website about Lyme disease, which may play a part in the development of Glioblastoma, and is treated using Doxycycline, which is part of the Care Oncology Protocol. That is very early data but very interesting to think about.


        • #5
          Does careOncology have to start alongside radiation/chemo or after? We asked out oncologist and he said generally try to avoid other meds.


          • #6
            Care Oncology is running a few trials, including looking at their cocktail during radiation. Contact them - it is worth paying the consultation fee to see what they think of that approach.