Dr. Tavakoli did say today that my condition is so rare that there is no good data for treatment, survival rates, or...anything. As my sister Kathy said yesterday, I've always been special! I like to think of myself as the albino tiger of the oncology dept at Kaiser.
Karunadevi and Julie came with me today. I will be getting Cisplatinum, a 'radio sensitizer'. Meaning that its primary function is to enhance the effectiveness of the radiation. I forgot to ask how long it takes to administer (could be anywhere between 1 & 8 hours.)
He is not concerned about herbs or acupuncture - just advised caution in making sure there is nothing in the herbs that causes blood thinning.
A couple of things about chemotherapy side effects (will copy this to treatment section too)
- Staying hydrated is most important - not just with water, which can strain kidneys. Need electrolytes. Need to find way to do this without sugar. Found this recipe on http://lowcarbdiets.about.com: Just mix together: 1 cup (8 oz) water (not carbonated), 2 Tablespoons lemon juice, small pinch of salt, flavoring and sweetener to taste.
- Need to keep a thermometer on hand. If temperature is > 100.4 for 2 hours, OR if 101 even once, need to go to emergency room.
- My hair will fall out after a couple of weeks. I will cut it very short before I start.
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