Image by sparrowsfall via Flickr
At the dosage I was prescribed Novantrone, I thankfully did not suffer the classic chemotherapy side effects. I kept all my hair and had no problems with nausea. Novantrone was dispensed as an IV drip, once every three months. It only took a few hours to administer, so I would get the treatment in the morning and go to work in the afternoon.
One interesting characteristic of Novantrone is its deep blue color. When I was about halfway through with my first infusion of the stuff, I needed to use the restroom. Imagine my surprise just prior to flushing when I looked down into the bowl, and instead of the customary yellow color I saw a toilet bowl that appeared as if it had Sani-Flush cleaner in it. I laughed out loud. People outside the restroom probably wondered about me.
I don’t want to compare what I am going through to what cancer patients experience. But, I knew I was in the big leagues when the person to my left was talking to the person to my right about where exactly they stood in the complex process of getting their affairs in order, and they were speaking about this as casually as one would talk to a friend about whether he had filed his tax return yet, or whether he was the type of person who would procrastinate until April 15th. Could the cancer patients tell that I was not one of them because of my rosy red cheeks and full head of hair (well except for that thinning area on the very top)? In later years, when I entered the infusion room in my scooter or wheelchair, did the cancer patients wonder if I had that all too common “leg cancer”, and were they then secretly but errantly thankful that their cancer was not as advanced as mine?
Although I had very few noticeable side effects from Novantrone, I did not take it without some risk. Too much Novantrone affects your heart's ability to pump blood. So everyone has a maximum lifetime dosage of Novantrone that they can take. When I was taking Novantrone the protocol required a full cardiac checkup before starting on the treatment. Today you need a full cardiac checkup before each infusion. I don’t mean to scare anyone away. If you need Novantrone to slow down your worsening MS, I think it is a very reasonable risk to take.
|(Photo credit: Wikipedia)|
A few months after learning I had MS, almost midway through my year of Novantrone treatments, I felt the need to get a second opinion about my diagnosis and treatment. I met a friend whose doctor in Boston was a world renowned MS expert. I was able to get a few minutes one day with the guru himself. He confirmed my diagnosis of Primary Progressive Multiple Sclerosis, and suggested that I try his drug of choice called Copaxone. Both Novantrone and Copaxone were being trialed as possible treatments for PPMS. Both trials eventually failed, as have all PPMS trials to date.
Copaxone is administered by the patient as a self injection, once per day. So while I was still getting Novantrone treatments I added this second very powerful and very expensive (but covered by insurance) treatment regimen. There were two other injectable drugs available at the time. The advantage of Copaxone over these drugs was that it did not have any flu-like side effects, as the other two options did. The drawback with Copaxone was that it required a daily injection, whereas the other two drugs were an every-other-day injection and a once-a-week injection.
|(Photo credit: Wikipedia)|