Dec 04, 2011 - 1:34 pm
My sister got diagnosed with a grade 3 anaplastic astrocytoma July 2011. I still want to scream and throw up when I write these words. Cancer stole our happiness. We are sometimes happy but never again that perfect innocent happiness that I knew and cherish so much.
She already had 2 surgeries, completed the radiation treatment and is now on the Temodar (even thought she has an unfavorable MGMT mutation and idh1, but the neuro-oncologists just do not have anything else to offer her -opinion from Hopkins, Duke, and MD anderson). The second surgery was to drain a huge cyst that formed in her brain after the radiation. She developed extreme vertigo and was bed bound for a while. It destroyed her physically and emotionally. But since then, the vertigo resolved. She started to go out again with her friends to eat sushi, wear her high heels. My husband and I took her to the Canyons, Utah where I skied and she wrote her novel and worked on her PhD thesis by the fireplace in our hotel. It was snowing and the xmas decorations were pretty with twinkling lights.
I am not comfortable with the wait and see approach.
Our next MRI is december 14th. And while I hope it shows that the tumor is in remission, I know that these tumors come back years later (except for a few cases, documented as anomalies in the literature). First I researched vaccines and realized that I missed the window where the tumor lysate is converted into a vaccine right after the surgery (UCLA, miami). Then I researched the generic vaccines (not made from the tumor but from the common peptides): the one ones out there are for the GBMs or for children or for the grade 2. My sister grade 3 was eliminated not because there is no benefit but because she does not fit the experiment requirements.
So then I turned to the world of oncolytic virus. I guess I naturally turn to immunology (vaccine, viruses) because they make sense to me; and I view chemotherapy as a toxic substance that is a substitution for a real cure, like chicory instead of coffee. Well none of the oncolytic virus showed any real curable levels. The ones that I am interested in, the New Castle disease or the VSV are not ready. When I emailed the leader researcher on the VSV oncolytic virus he said that the road block was a financial one. They were still trigging to raise money for a clinical trial no matter how many mice he cured of their glioma. So cures are not found or they are delayed because of financial reasons. MADDENING.
Finally I turned to three interesting substances:
DCA- University of Alberta. I waiting their results. The clinical trial is closed. If the results are promising, it would be great. DCA is a cheap cheap substance and would be easily produced.
Melatonin: ahhhh these Italian studies in the literature, so small in numbers but so compelling. My sister is on 15mg per night per my recommendation.
POLY-ICLC: I finally got in touch with Oncovir. It looks like I have to work really heard to get these injections part of my sister's regimen. POLY-ICLC has been used in healthy volunteers and Phase 1 has shown that it is a safe drug. In a small study, grade 3s lived an average of 6.5 years. (better than the 3 years average).
So my sister and I have settled in a routine. The holidays will be joyful (but not perfectly happy, I was listening to some carols and tears started to go down my cheeks as I realized again that my darling sister has brain cancer). We will get the xmas tree and we will toast to the new year and say that these dark times will pass, that the tumor will disappear and never never come back. And we will believe every word of it.
My love to you all