Novantrone doesn't work for everyone

by Michael S. Kaplan, published on 2006/01/24 03:01 -05:00, original URI: http://blogs.msdn.com/b/michkap/archive/2006/01/24/516670.aspx


(Nothing technical in this post, sorry!)

I have been getting some interesting email and other communication from people since I have talked about taking Novantrone.

Now many of those people who think me being positive about it is misleading and evil. I won't post any of the ruder mails that fall into THAT category, but I'll post the most recent one from that fourth category:

I read your concerns about Novantrone.  You are right to be worried about this drug.  My daughter took Novantrone and ended up losing her once healthy heart.  Her doctor failed to monitor her properly and the drug destroyed her heart.  Doctors gave up on her and said that she would die because no one would give her a heart transplant because of her MS.  For weeks she lay clinging to life until one very special hospital in North Carolina gave her heart transplant over a year ago.

Her life has changed dramatically since the heart transplant.  Currently, she takes numerous anti-rejection pills; she currently is fighting an episode of rejection.

Novantrone is too deadly for MS patients.  It never helped her MS at all.

I really do not think MS patients understand how deadly this drug is. . . for more deadly that MS.  Novantrone kills!

Think about what happened to my daughter before taking Novantrone.  MS is bad; however, there is hope with MS.  Novantrone kills.

My heart definitely goes out to this woman's daughter, and I hope she is able to recover after the transplant.

Let me state for the record that I am not a doctor or a lawyer, but if a neurologist prescribed Novantrone and was not doing regular echocardiograms then someone should probably be seeing a lawyer, I know I would. Though of course it was less than a year ago that the recommendtions for regular echocardiograms were put in (and many insurance companies probably would have refused to pay for this "un-necessary test" before the change -- there is lots of evil to go around here)

But beyond that, I would not want anyone to read about my experiences and decide that they want to take Novantrone for their MS just because of my attitude or results. Because even if the doctors behave responsibly, it is a poison. That's its point. And if I had another, better choide, you can bet your ass I'd be taking it.

I am actually reminded of a scene from the movie The Paper that I saw again a few days ago on TV:

Vitor Truro: Now don't overreact. If we go after it early, before it metastasizes to a bone, the majority of these prostate cancer cases are beatable.
Robert Duvall: Go after it how?
Vitor Truro: Irridation therapy.
Robert Duvall: That's fantastic. That's wonderful. Because... as it turns out, that's exactly the portion of my anatomy I'd like to see exposed to radiation.
Vitor Truro: You'll have to take an hour or two off work for each treatment. We should start right away. How's next monday?
Robert Duvall: To burn a hole in my ass? Sounds good. That way I still have the weekend.
<frustrated pause>
Robert Duvall: Could you possibly be any more humourless about this?
Vitor Truro: I don't believe so. No.

Now we can laugh if Emo jokes about he bought his girlfriend something crazy and expensive that she didn't even need (he signed her up for radiation therapy). But we know that it is serious stuff, deep down. And Novantrone is a chemotherapy drug, and the only good thing that can be said about such a poison is that sometimes it brings a very targetted form of deadly to the mix.

They did change the labelling last year for a reason. And I don't plan to ignore that fact. I mean, I've been lucky so far. But if I get an echocardiogram that tells me anything even remotely negative, then I won't be in for that next infusion. My LVEF is about 75% right now, and if it starts going down I am not going to wait for it to go below 50% before I say farewell to the blue stuff. If you know what I mean. I may need that "good heart" later!

And my doctor knows that (I have made it very clear but I think she knew anyway, she knows me in serious situations like this one).

And if the Novantrone doesn't work out, I'll be sure to mention that too -- I am not shilling for the drug company on this one.

But for now (two doses in) things are still going okay (and it does appear to have helped with some transient symptoms). I'll stick with it until that changes or the course ends....


# Zach Glazer on 24 Jan 2006 2:26 PM:

Glad to hear that things are going well. Just curious if you knew that NBC announced that it is cancelling the West Wing.

# Michael S. Kaplan on 24 Jan 2006 2:28 PM:

Yeah, I heard. Sad, but the show has been going downhill P.S. (Post Sorkin!). :-(

# Serge Wautier on 28 Jan 2006 4:19 AM:

> (Nothing technical in this post, sorry!)

Michael, I might understand some people are not interested in your non technical posts hence appreciate you telling it.
But that's no reason to be sorry about such posts!

# Michael S. Kaplan on 28 Jan 2006 1:14 PM:

Just being self conscious about pointing out health issues in a technical blog, that's all. :-)

Marie Arnold on 26 Oct 2007 7:00 PM:

My husband was on Novantrone from 2002 to 2004. I do not remember him having any echocardiograms, only blood tests. He was just diagnosed with congestive heart failure and had an ejection fracture of 10%. He may need a defibrulator implant.  Novantrone didn't help the MS symptoms much either.  It isn't worth the risk.

debbie klompmaker on 20 Jan 2008 10:45 AM:

i still think its worth a try

Michael S. Kaplan on 20 Jan 2008 7:34 PM:

I tend to agree, though care must definitely be taken!

Donna R. on 18 Jul 2008 9:41 PM:

Michael,

I'm curious about how you are doing now, 2 years later?  My neuro just recommended Novantrone and I'm trying to find more real people who have had it.  I hope you are well.


referenced by

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

2006/02/17 What's the latest on the MS front?

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