Wednesday, 27 January 2016

45 YO daughter diagnosed with Glioblastoma

My daughter Debra was diagnosed with glioblastoma on December 19. The tumor was completely removed and she has regained all movement on her right side. About 2 years ago she was diagnosed with a very rare appendix cancer, which has not returned. The brain cancer is separate & considered unrelated. Debra is in her 5th day of radiation and chemo of TMZ. She lives in Boise, Idaho and getting her treatments at the MISTI.

My other daughter, Brenda, an RN and myself have thoroughly studied the available information on the drug cocktail approach to care. We are trying to put together a basic list of supplements for Debra to take. Both her radiologist oncologist and Neuro Oncologist seem to be supportive of  supplements, with some restrictions. One thing that was mentioned was not to take any anti-oxidants during radiation because they could counteract the radiation. I was just wondering what you have heard and any suggestions you have on the supplements during and after radiation.

We are gathering all of the records to be sent to UCSF for their opinion and to see if she is a candidate for a clinical trial for newly diagnosed patients.
I have been viewing this blog for the last few weeks and now am ready to reach out.


  1. Ben Williams has written extensively on the "antioxidants during chemo/radiation" controversy.

    My own feeling is that certain antioxidants could counteract radiation (vitamin C, vitamin E), but most of them probably not.

    Have a look at the Radiation page on Astroctoma Options. Some of these things (like pterostilbene) are antioxidants but seem to make radiation more effective, at least in preclinical mouse models.

    I also keep an up-to-date, but highly selected, list of currently recruiting trials for GBM at Astrocytoma Options.

    She is younger than the average GBM patient. Was her tumor checked for the IDH1 mutation? On the pathology report it would say "IDH1 R132H" positive or negative.

    Note these trials, currently recruiting (CMV-directed dendritic cell vaccine) (ICT-107, has a placebo control arm)

    Any of these would be worth pursuing, if she meets the eligibility criteria, and if not too late to join already.

    Do you have a connection to SF (I'm there right now)?

  2. Stephen, I'm not sure they have an actual contact with SF. I know that they have a long list of records which need to be sent and then will most likely make an appointment. Are you there as a patient or medical professional?

  3. Linda and Stephen, That is exactly how it works. You submit the records to the department and they pick the doctor they think most appropriate for the case.