'Our move. What do you think?' I asked. 'Napalm' she said.

by Michael S. Kaplan, published on 2005/08/03 10:20 -04:00, original URI: http://blogs.msdn.com/b/michkap/archive/2005/08/03/447149.aspx


(nothing technical here, at least not for computers -- if the MS thing doesn't interest you then you may want to skip this one)

I did lift and modify the title quote from the movie Barbarians at the Gate. George Roberts (played by Peter Dvorsky) is talking with Henry Kravis (well played by Jonathan Pryce) just after a meeting where they were stonewalled. The clock is ticking, and time is running out. So George asks the question and Henry makes clear that a slash and burn strategy is called for.

A great movie that I enjoy a lot, and a scene that has been running through my head a lot over the last few days, which have had some fairly huge distractions....

I had an unusual appointment with my neurologist on Monday (I think I had already mentioned that it was a fairly odd day, professionally). We were talking about recent declines in my MS that did not seem related to a specific clinical exacerbation. Now this is a disturbing trend, any way you look at it. If you want to reverse these things and not have them stay as permanent deficits, you have to act quickly.

But the options for acting are limited -- there are just not very many conventional treatments available, and as unconventional as some people believe me to be, I am about as likely to start the snake oil rounds as I am to sprout wings and fly to Guam. I certainly am not going to jump into the exciting world of stem cell research. There is just not a lot out there....

So my neurologist made a very responsible suggestion -- that it may be time to think about Novantrone.

Now Novantrone is pretty much the napalm of the MS world -- an antineoplastic agent (basically chemotherapy), and you can watch how much the official site for the drug tries to tap dance about how much milder the drug is when used for MS than for cancer (whoever decided it was okay to sell it under the same brand name rather than a different one was not thinking too clearly that day, if you ask me).

But even though it is the napalm treatment, it is pretty much one of the only treatment options that really exist for what they like to euphamstically call "worsening MS". It is the sort of thing I had already learned a lot about because I have a morbid fascination for such things. The party line about how it works is pretty harsh, even after the spin doctors have had their way with it:

Novantrone works differently from other MS drugs This difference provides hope for people who have experienced worsening symptoms of MS while getting other treatments.

Other drugs used to treat MS (like interferon) "moderate" the immune system. You can think of it as "calming down" certain immune cells, but not completely reducing their numbers.

Novantrone works by "suppressing" the immune system. The active substance in Novantrone (called mitoxantrone) affects DNA, a basic building block of all cells. You can think of Novantrone as killing certain cells in the immune system (called T cells, B cells, and macrophages). These are the cells thought to become abnormal and lead the attack on the myelin sheath—producing the brain or spinal lesions characteristic of MS.

You may hear the term chemotherapy associated with Novantrone. For some people, the word "chemotherapy" triggers scary images. However, the word simply means using chemicals to treat disease.

When used to fight cancer, chemotherapy drugs are given in doses that are strong enough to kill aggressively-growing tumor cells.

However, when Novantrone is used to treat MS the goal is to inactivate or destroy any immune cells that are "misguided." When Novantrone is prescribed by a doctor for MS, the recommended treatment schedule is far less intensive than for cancer. The overall dosage is given less frequently over a longer period of time.

Well, okay. But the list of side effects are the same, the worries about the potentially destructive effect on the heart is in there, the small (less than 1%) chance of getting leukemia is present, and the fact that the effects can still be a worry years after you have stopped the treatment is sobering. The Patient Information Leaflet goes into the amusing under any other circumstances things like blue-green urine and the whites of the eyes turning blue. Some of the other risks are also interesting....

But the fact that hits me hardest is not even one of the side effects -- it is that this drug has a lifetime maximum dosage of somewhere around 8-12 doses.

This is where that morbid fascination thing kicks in -- a drug with such long-term destructive potential that there is not just a daily or weekly maximum but an actual maximum over the period of a lifetime.

Wow. Or whatever the negative version of the word 'Wow' is.

Am I really doing that badly?

Of course that is the problem, and that is why it might be the right thing to try -- because I am not doing so badly that this would be a useless idea; it may well be the perfect time to knock this monkey off my back for a little, try to unseat the mostly unfettered ascendency of multiple sclerosis a bit.

The other problem is a psychological one -- when the MS was not affecting me as much, I was in denial and everyone would go on about how great my attitude was and what a great example I was setting (and everyone has a friend or relative who is doing worse than I am). But now that it is affecting me and I finally may be reaching a more real and healthy attitude, a lot of people don't know what to do with me and have trouble thinking of me as setting a great example for anybody.

I used to think that just about everything I ever needed to know I learned from the movie Apocalypse Now (yes, many will find that to be disturbing!), but this time Coppola failed me -- despite Robert Duvall's memorable Kilgore quote, I am not loving the smell of this napalm in the morning.

On the other hand, I am finding comfort in Captain Willard's (Martin Sheen's) words, modified for this situation. "I took the Novantrone consult. What the hell else was I going to do? But I really didn't know what I'd do when I found if it was right."

So we'll see what happens.

This post may not have been everyone's cup of tea, so I am sorry for that. But it is hard for me to completely separate the various pieces of my life since they are all me, in the end. One way or another I do have to sort it all out....


# McGurk on 3 Aug 2005 11:27 AM:

I heard on /. that MS was bad, but this is friggin outrageous!

# Michael S. Kaplan on 3 Aug 2005 12:02 PM:

Well, there is a certain acronymical ambiguity -- I work for MS, I have MS. I like MS, MS sucks, etc. :-)

# Michael Kohne on 3 Aug 2005 12:56 PM:

The lifetime max may not have to do with toxicity directly. My father was on a number of chemo drugs for lung cancer, and it turns out that for some drugs, EVERYONE who takes it eventually develops an allergic reaction to it. Once that happens, you can never take the drug again - you'll just go into shock.

# Michael S. Kaplan on 3 Aug 2005 2:22 PM:

Hi Michael --

Yes, that is a good point, and I know I am oversimplifying the issue. It's just I was ao moved by the idea (and they monitor specific effects to the heart to gate most of the decision making in this case)....

# winden on 3 Aug 2005 2:23 PM:

Michael, I'm pretty sure you already know but just in case... do you recognise that "think of Novantrone as killing certain cells in the immune system (called T cells, B cells, and macrophages)." is about the same as taking a dose of AIDS?

# Michael S. Kaplan on 3 Aug 2005 2:33 PM:

Hi Winden -- Yes, I have mentioned to people before that there are many autoimmune disorders that would 'benefit' from AIDS in the sense that an immune system that is not attacking you cannot harm you. The unfortunate side of that is that of course AIDS is a much more deadly disease than most of the ones that it would "cure". A lot of immunosupression stuff resembles AIDS (in fact, some of the opportunistic infections that most commonly affect people with AIDS were prior to AIDS seen mainly in cases of immunosupression).

# Chris on 4 Aug 2005 9:12 AM:

This was a great entry!

I take an immune-suppression drug myself. I'm on a lower dose than kidney transplant patients get, but it still gives me an excuse not to shake hands with sick people. :-)

# Michael S. Kaplan on 4 Aug 2005 1:57 PM:

Hey Chris --

I tell people to stay home when they are sick even now (http://blogs.msdn.com/michkap/archive/2005/03/12/394417.aspx) and certainly don't shake hands. :-)

# kurakuraninja on 9 Aug 2005 4:13 PM:

Some of you may recall my post about how the new MS drug Tysabri took my breath away with two reports...

referenced by

2008/07/20 You might have to poison me (now that I'm not doing it myself, I mean)

2007/10/30 If the Novantrone juice isn't worth the squeeze...

2007/01/24 Driving myself to a vacation from napalm

2006/08/05 Sometimes it pays to be on drugs

2005/08/16 It may make my brown eyes blue

2005/08/09 Tysabri still down for the count

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