Wednesday, August 19, 2009

My MS Story Chapter 4 – My Secret Life as a Pin Cushion

_iv drip
Image by sparrowsfall via Flickr
“What did I learn today? Today I learned that everybody at the infusion center getting exotic chemotherapy drugs pushed into their veins does not necessarily have cancer.” Mitch, circa 2001

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.

A snowmobile tour at Yellowstone National Park
(Photo credit: Wikipedia)
My reaction to the first three doses was very mild. It did not affect my daily activities at all. In fact, after my second treatment I went on a 225 mile snowmobile ride the very next day (I really miss snowmobiling by the way). However, after the fourth treatment I did feel quite fatigued for a number of days. I never took a fifth dose because my physician and I concluded that the disease was progressing in such a manner that the Novantrone was probably not having any positive effect on me. Such was my first attempt at controlling multiple sclerosis. It was quite disappointing that our aggressive gamble at slowing down this disease before it ever really got going was a complete failure. I had been very optimistic that this approach was going to pay off. We had played our trump card early in the game. We had shot our silver bullet and had missed the target.

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.

Injections are one of many ways to administer ...
(Photo credit: Wikipedia)
So I got my Copaxone kit including pre-filled syringes and autoinjector device that did the dirty work for you. I loaded the syringe into the autoinjector, selected a spot on my thigh, and pushed the button. I must tell you that all the literature that I read and patient reports that I had received on the internet made Copaxone sound like a piece of cake compared to the other two injectable drugs. I was sorely, emphasis on the word sorely, disappointed. It felt like a giant bee sting. The injection site was often bruised any number of colors for a few days. Frankly, I felt betrayed by the medical community and by my fellow MSers. Either nobody had mentioned the discomfort that came with the shots or I was wearing rose colored glasses when researching Copaxone. I’ve learned since that this is a hit or miss thing. Many folks feel very little discomfort and a few of us feel significant discomfort (I’ve been hanging around doctors too much- referring to pain as discomfort). I built a detailed spreadsheet for tracking my infusions, with date, location on my body where I injected, and how the injection felt. Despite the pain associated with Copaxone injections, I was again optimistic that this treatment would slow down the stubborn disease.

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  1. Hi,
    My husband has secondary progressive MS.
    Thanks for your blog, thanks for writing about this, thanks for sharing your day to day experience.

  2. Elisabelle,

    I wish your husband the best luck with his SPMS. SPMS and PPMS are pretty damn similar, they just start from different places.

    I'm glad you like the blog.

  3. Thank you so much for your courage and honesty. We just learned that a relative has MS most likely primary progressive. Reading your blogs has been very helpful for us to learn more about this disease. Best of luck and thank you again so much for your insights and for sharing your experiences....

  4. Anonymous,

    Thanks so much. I sometimes worry that my frank accounting of my disease progression might be a bit much for someone just diagnosed. But I think I would have wanted this kind of info when I was a newbie.

  5. Hi Mitch,
    thank you very much for this website! May I ask - just out of curiosity - if you ever tried Low Dose Naltrexone? I myself (also PPMS) haven't and so can't recommend but am thinking about it.
    All the best,

  6. Anne,

    I tried LDN for about a month. If anything, it seemed to hurt slightly rather than help. I place LDN in the category of relatively weak but low risk treatments. If I were you I would not expect major improvements from it, but I'd give it a try. It is cheap and harmless. Good luck.