Novantrone experiences

[llama]

Hi, new hear, have been a reader for seven years. Just started Novantrone two months ago, scheduled for steriods this week and third Novantrone by months end. Anyone used Novantrone, what can I expect? I've done very well with MS and Betaseron for the past eleven years, just seems to be worsening as of late. Neuro likes to be proactive, feels that cure is ten years away. Thoughts and comments are appreciated.:)

[Lazarus]

I'm in the same posision as you. I'll be interested to see what people say.

I didn't check to see if all the archives came through the recent crash intact. If they did, there would be tons of posts on people's experiences with novantrone.

[jendie]

I'm one of the people who has taken Novantrone and I didn't see any of the old stuff in the "archives" link, just new posts.

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I started N in July of '03. I was going downhill pretty rapidly and could barely walk a quarter mile without having to rest for at least an hour afterwards. My youngest child was 2 years old and the MS specialist had me in the clinical trial that paired Novantrone with Dexrazoxane, which is a heart protectant.

Once I got over the nausea from the chemo, I started noticing some improvements in my mobility and cognition. The first round the benefits didn't even last the full month before my next infusion. I got what they called rapid induction - I got an infusion once a month for the first 3 infusions after that started getting them every 3 months.

I have heard that some people noticed improvement after their 3rd infusion, but I didn't really notice lasting improvement until after #5. I dropped out of the trial after #8 because I moved to the high plains of northeast Colorado in 2005.

Since being out here I've received one more infusion, but that was without the benefit of dex. It's been 16 months since I got #9 and I'm feeling like another infusion wouldn't be a bad idea, I just don't have a way to get to the neuro's office or the hospital that has the infusion center.

I've wondered about Tysabri, but I haven't discussed it with my dr.

This is just my experience.

[beans27]

I had 7 infusions and it was a wonder drug for me. My MS has been quiet since dose #3. I haven't needed IVSM for a flare since 2/04.

I was flaring every 4-6 weeks requiring IVSM. I started on N and saw starting seeing some improvement after the 2nd dose, and even more after the 3rd.

I got 1g IVSM with each infusion of N.

[frame]

steroids did nothing for me, even the iv ones, so my neuro put me on novantrone
a nurse told me theres a lifetime limit of 12 doses or something, so i skipped my 3rd
then i see a ms specialist and told me the 3rd one is the moneymaker. anyway, stock up on campbells chicken noodle soup :)

[Tylerhenry]

Hello,

Since April of 03 I have had eleven infusions of Novantrone (Mitoxantrone to us Canadians). I also noticed improvement after the firs few doses. I had been on Rebif with seemingly constant rounds of Prednisone but I kept getting worse until I started the chemo.

I have been pretty stable since I started N. I think I have two or three doses left. There is a mg limit (144 i think) based on your height and weight. Your doc will figure it all out. I am a rarity in my ms clinic because, out of all the people on N, I get the sickest of all. Yeehaw! usually I am pretty ill for a week after. Even throwing up sometimes. However, I recently discovered that being very well hydrated before hand (like start drinking a lot of water the day before or so) makes a huge differentce. My last infusion went the smoothest so far. Just when I'm getting to the end! :(

Since I was feeling well I have been spacing out the distence between infusions. The longest gap was six months. It all depends on how you feel. And don't let anyone tell you how you feel! You will know if it is making a difference.

Good luck!
:)
Tyler

[elizabeth]

Hi, Llama! Welcome to posting (versus lurking, I suppose?)!

I wish you good luck with the Novantrone. I think the real key is to pay close attention to how you feel, and as TylerHenry notes, don't let anyone tell you how you feel. You will know.

I decided, after a LOT of thought and consideration, to save mitoxantrone for later, even though my MS has really been kicking me HARD for several years. I have a history with a congenital heart defect, and even though there's no clear link between the drug's side effect profile and my particular problem, my neuro, electrophysiologist, cardiologist and I basically decided that I am not at the point that I need to pull out the "biggest gun" in the MS arsenal, yet.

(To be really honest, I am not sure how much worse things would have to get to be there, but that's a whole 'nother discussion, as they say!)

Really, mitoxantrone is like any other drug -- pay attention to how you feel; make sure you are taking good care of yourself; and if you are having good results, enjoy them. If you are not having good results, or if you have harsh side effects, I think you talk to your doctor. If you have a good result with hard side effects, you can work on the side effects to some extent. If you aren't getting a good result, well, it's not the right drug for everyone.

By now, you probably have some idea whether you are being helped??? I sure hope you start feeling some effect of the treatment, or at least can notice that you are not worsening anymore by now. I think, based on what I have seen from most posts from users, that people feel effects in the first several treatments, so I would imagine that you might know soon.

I will hope for the best for you, and I hope you will let us know how things go, especially so that those of us who are "fence sitters" (like me!) will have good information upon which to choose what to do when trying to decide when to jump in and try it. The best of everything to you, and welcome to the once-again-new-board.

:)

[llama]

Thanks for all the positive thoughts and comments. Feeling better from the steriods this week and getting ready for Novantrone #3. Haven't had any bad reactions yet and trust me I monitor myself very closely. Learned to listen to my body years ago. Hope everyone else is doing well and look forward to hearing more.