By Michelle LaBrosse, PMP
For those of you who may have been following my blog posts regarding my mom’s recovery from brain cancer, I’m sorry to report that one of the by products of brain cancer led to her demise. She suffered her final seizure on February 7 that rendered her essentially brain dead and she passed away six days later. Seizures from brain cancer are not caused for the same reasons as seizures from epilepsy. And they are not necessarily something that will happen to everyone – unless they have brain surgery. The one drug that may have been able to have stopped the seizures due to the glutamate reaction was not approved for brain cancer and I could not get any of her physicians to take a chance on it. My mom led an exbuerant, and inspiring life filled with laughter and love. We held a celebration of her life last weekend. Here is the link to her tribute video my friend Jody Kasch helped create.
Lessons Learned – here are my take aways from my foray into brain cancer land with my Mom.
1. Get to the Bruzynski Clinic at the first diagnosis of brain cancer. The sooner you get these folks involved in cancer recovery, the better chance of success.
2. Do not do a brain biopsy for a diffuse glioma – this caused far more problems than it solved. The neurosurgeon was quite persuasive in his pitch on why we should do a very invasive biopsy saying “I certify neurosurgeons in NY and I would not certify a neurosurgeon who would not do a biopsy for brain cancer.” Well then of course most neurosurgeons in NY certified by him would take the same position.
3. Give up sugar, adopt a ketogenic diet, avoid as many environmental toxins as possible, stay away from cholesterol lowering drugs that impact your liver, and do the tumeric root and mushroom capsules daily. I did a blog post on what I learned about recovering from brain cancer here.
4. Always have hope you will recover – my Mom did the best when she was hopeful. Only hang around with people who also believe you can recover.
5. If a drug has been shown to work for a co-morbiity factor (the seizures), find a doctor who will prescribe it. Here is a copy of the peer review paper that shows how the drug sulfasalazine, approved for Chron’s disease, can suppress seizures from brain tumors. glutamate-release-by-primary-brain-tumors-induces-epileptic-activity
6. People who develop brain cancer need strong caring advocates as they develop deficits due to their condition. Simple things like feeding themselves becomes very difficult and even if they look like they can still feed themselves, start making them very small simple meals throughout the day that are easy to eat to insure they are getting adequate nutrition. They also may lose “executive functioning” gradually over time – this requires care and finesse to gradually take over without being intrusive.
7. Enjoy your life and the people in it while you are healthy. Go for it.