Traditional Treatments - Summary

KK's traditional, western-medical treatments began at UMass Medical University Campus where she was diagnosed with a Glioblastoma Multiforme Grade IV brain tumor in her left temporal lobe. The tumor was 5-5.5cm in diameter. She had a resection to remove as much of the tumor as the neurosurgeon felt they could. They placed a VP shunt to relieve the hydrocephalus during a follow-up surgery. The shunt clogged and failed three times resulting in three more surgeries. Things did not go well after surgery #5. Since I had already been in communication with Dana Farber Cancer Institute, I asked UMass to get her there as soon as possible. They performed a sixth surgery to place an external shunt and prepare KK to be life-flighted to Children's Hospital.

The neurosurgeon at Children's Hospital deemed it possible to remove more of the tumor. This decision allowed KK to be a part of a phase 1 clinical trial (AdV-tk) where they injected a modified adenovirus into the tumor bed. This was followed by 14 days of antiviral meds. After the Adenoviral Vector trial surgery, KK had a very high temp and tachycardia that had a team of doctors and nurses filling her room in the PICU (it took me 18 months to realize that the fever and tachycardia were caused by the adenovirus). KK continued to have trouble with hydrocephalus resulting in two more surgeries at Children's Hospital.

KK then received the Standard of Care at Dana Farber Cancer Institute and Brigham and Women's Hospital. The SoC included 7 weeks of Radiation Therapy alongside a low dose of Temozolomide (oral chemotherapy). KK was prescribed a low dose of Dexamethasone (steroids) to reduce the swelling that is caused by the radiation burns. KK hated the way she felt on steroids (I also hated the way she felt on steroids) and she asked the neuro-oncologist if she could stop taking them before radiation was finished. He gave us permission to wean her off the steroids. She did start exhibiting symptoms of swelling, but she told the doctors that she would rather throw up than take steroids again. Radiation was followed by 28-day cycles that included 5 days of a higher dose of Temozolomide and 23 days off. During these cycles, KK also received infusions of Avastin every 2 weeks. In addition, they gave her antibiotics to prevent pneumonia (though KK didn't last long on these).

After 5 months, the tumor began infiltrating KK's occipital lobe and her team basically said that it was pointless to continue the above treatments since they failed. We regrouped a week after the MRI and her team presented the possibility of going to St. Jude's (Tennessee) or Memorial Sloan Kettering (New York) for clinical trials that were very similar to what we had already done. I asked for an alternative approach instead: IV Vitamin C along with a metronomic (low) dose of chemotherapy. The team agreed to do this and suggested a metronomic antiangiogenic protocol (a combination of five drugs given at a low dose that block cancer blood vessel growth) that they have used. I ended up choosing just one of the five drugs, Cyclophosphamide, which she takes orally each morning.

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