Coley's Toxins Weeks 1 & 2

We had heard and read much about Coley's Toxins and its potential side effects, and now I was to experience it. We want to share my experience with others: how Coley's Toxins actually makes one feel - both immediately during and after treatment. The past two weeks have been like a long experiment. We recorded every sensation I felt during and after the Coley's treatment. Constant temperature, oxygen, pulse and blood pressure measurements gave us more clues on how to ameliorate the side effects.

I am following MBVax's protocol (www.mbvax.com), which calls for intravenous administration and dose escalation to achieve fevers between 102.5-106F. The frequency of administration is five times for the first 6 weeks, then three times a week for 3 weeks, then two times a week for 6 months or more. I am aiming to do Coley's for a total of six months for maximum effectiveness.

During the first two weeks of Coley's Toxins treatment, I have been receiving intravenous infusions on Mon, Wed and Fri.

(a vial of Coley's Toxins - red because of the Serratia marcescens bacteria)

Prewarming

One of the common side effects of Coley's Toxins is chills and shakes. A way to minimize the shakes and chills is to prewarm the patient before the infusion of Coley's Toxins. This raises the body temperature so the body does not need to shake and generate chills to warm the body up as it responds to the Coley's.

Every time before the administration of Coley's, I lie in bed with blankets over me, and a full-body heat pad underneath. I only turn on the heat pad if I don't feel warm enough. After a few times of Coley's, we realized that it is best *not* to sweat before I reach a temperature above 102.5F. Somehow the sweat drains energy from me, making it difficult for me to hit the high temperatures.

Chills

Of the six times that I've had Coley's so far, I have not experienced any shakes. This may be because I am prewarmed, so the body does not need to shake to raise the temperature. I have felt chills though. It feels like a cool breeze along my back. Sometimes it is on one side of my back, going from the top to bottom, or sometimes it goes from left to right, and sometimes it radiates from the center of the back outwards.

Once I feel a chill, I immediately turn on the full-body heat pad. The warmth minimizes the chills. I usually feel 5-10 chills before it stops.

Sometimes during the chills, my bones feel achy.

Fever

Once the chills stop, my temperature starts to climb. During this time, I feel hot and fatigued. Usually the volume of my voice decreases, and I feel like keeping my eyes closed. I try to stay warm but not to a point where I am sweating.

I also keep on sipping electrolytes. MBVax recommends making your own electrolytes with sugar, salt and water, as the store bought ones have too much sugar. The amount of electrolyte I need seems to correlate with how much I've sweat.

I have felt headaches during the fever phase. Usually it's only on one side of the head - a dull headache. It usually goes away by the end of the fever and after I take more oral electrolytes.

Flush phase

It's been quite consistent that when I feel I cannot take the heat anymore and throw away the blankets, that is usually when my temperature starts to decrease. I also feel much warmer and start to sweat more.

After the fever

When my temperature drops to 100-101, I usually feel well enough to eat dinner with a good appetite (see picture below - my dinner after the fever). I don't eat during the fever, so I skip lunch. I am usually a bit fatigued, and my bones feel achy and tired.

The next day I usually feel 100% back to normal. A few times I felt flushed and hot, but that only lasted about 10 mins or so.

An interesting thing is that if I get Coley's on Friday, I feel totally fine on Saturday, but I start to feel a bit fatigued and my bones ache a bit on Sunday.