Wednesday, 16 September 2020

Urgent help needed - Butterfly Glioblastoma

September 12, 2020

Hi Stephen & All,

Seeking your help relating to my Mothers Brain Tumor treatment, please help with the treatments, procedures and medicines. We are in India and we have very limited access to new and emerging treatments and hardly in trails for Glioblastoma.

My mother (Age in 60's) diagnosed with Brain Tumor on April 2020, had first surgery in last week of April 2020, didn't receive any biopsy report till July and no other(Radiation & Chemo) treatment due to COVID lock down in India, July biopsy report after first surgery just mentioned possible high grade glioma, She recovered well after first surgery but in July she started having seizures and MRI in July showed recurrence and she had second surgery in first week of August but this time shes having issues after surgery due CSF leak and till now we trying to get it fixed before going for radiation, in the mean time we are looking for options we have to stop tumor growth, I think we are getting late in radiation treatment, I think if we can start chemo before radiation it may help.

As per her CT scan today her tumor is growing very fast.

Biopsy details from last month below

On IHC - The tumor cells are positive for GFAP, IDH-1 and p53, Ki67 index very high (30%).

Impression - Histological features are suggestive of  Glioblastoma, IDH-1 mutant, WHO grade IV, Corpus callosum.

August MRI - Recurrent parietal butterfly Glioma.

Please help.

Thank you


1 comment:

  1. I'm sorry for this situation, and especially not being able to get treatments due to COVID lockdown. This is the first time I've heard of a glioblastoma patient not getting treatment for that reason, and it isn't right.

    Yes I think given the speed of growth, you should try to get her a round of chemo even if she isn't ready for radiation. Chemo might not be as effective as the combination of radiation + chemo, but at least it is something and is better than nothing.

    I'm not sure about the availability of drugs in India, but either temozolomide (the standard GBM drug) or lomustine (CCNU) can be effective in this type of tumor (IDH1-mutant glioma).

    Just so you are aware, Ben Williams (see the book Surviving Terminal Cancer) also had a IDH1-mutant glioblastoma with lots of residual tumor left after surgery. He had radiation plus chemo (CCNU and BCNU as this was back in the 1990s before temozolomide was approved). He combined chemo with other drugs and found his tumor was highly responsive to the chemo - complete response.

    We will never know for sure but perhaps one of the drugs he was taking, such as verapamil, in addition to the chemo was a factor in his response. It was due to Ben's story and inspiration that this blog exists.

    Unlike some types of tumors that are resistant to chemo, the most proven treatments for this type of high grade IDH-mutant tumor are conventional radiation and chemo. They typically have lower immune activity than non-IDH mutant GBM and might not be as responsive to immune therapies such as checkpoint inhibitors. I hope you find some of this info helpful.