During the middle of February, Susie and I traveled to MD Anderson for her cancer appointments. As I’ve mentioned in the past, we are alternating every two months between two neuro-oncologist (one in Houston and one in Austin). Her appointment in Houston went well. We learned her scans are stable, which means no growth/ no negative changes. Some topics we discussed included:
- Fatigue/ energy level improvement, most drugs are amphetamines.
- Possibility of getting off from anti-seizure meds, not recommended at this time.
- Cognitive skills improving, still has issues with word finding.
- Future lab research/ clinical trials, two mentioned for IDH1.
We also received results from Susie’s enhanced genetic testing of 400 additional oncology genes. Mutations of interest that came up are TET2 and ATRX. The more we discussed Glioblastoma Multiforme, it seems obvious that this type of cancer is constantly evolving and is multi-faceted. I feel attacking this cancer with a single chemotherapy may slow progression/ arrest it for a bit. Our neuro-oncologist agrees and mentioned that medical approaches are now starting to look at a combination of drugs (cocktail approach) for treatment trials. The challenge is getting drug companies to support such trials.
Of which, there is a new film that just came out called ‘Surviving Terminal Cancer‘, by film-maker Dominic Hill. It premiered recently in London and New York and is now available for free viewing. The film features 3 long-term brain tumor survivors (Ben Williams, Rich Gerber, and Anders Ferry), and multiple other commentators. You can watch the full-length film at the survivingterminalcancer.com website. My favorite quote from the film is ‘Carpet Bombing Brain Cancer’. Some items that jogged my mind were:
- Are Phase III trials really necessary when looking at terminal cancers like GBM?
- Are blind/ double-blind studies using a placebo ethical in cancer clinical trials?
- Where are the maintenance clinical trials, i.e. post first year of treatments?
Very interesting indeed. I only wish I had seen this film before going to Houston. I’ll need to look at the film again and do some more research before Susie’s April visit in Austin. For now, I will leave you with a couple of photos from our journey to see Gabriel at Cal Poly in San Luis Obispo.
On the 1,700 mile drive out to see Gabriel, we stopped and saw friends in Balmorhea, TX (Dave, Karen and Julia) and Los Angeles, CA (Will, Katherine and Isabella). It was a great journey. We got to spend some quality time with Gabriel and our friends Wendy and Frank, including a tour of campus and oysters at Morro Bay.
