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Pattern of Treatment.....

I am starting to notice a pattern of how I respond to my Novantrone treatments. It seems that I have had a similar reaction with each treatment and so I think maybe this is just how it is going to be for me. My treatments are once every three months. It seems to take about a week or so for my body to respond to the chemo (which is normal....the first 14 days or so your immune system is weakened, then rebuilds itself). After that week or so I then immediately seem to do really well. Better than I have done in a very long time (probably since before my diagnosis....or longer). This lasts for a couple of months and then about 4 weeks before my next dose is due it seems the chemo wears off.

When this happens it hits really fast and I seem to go downhill very quick. My headaches get worse, I tend to have problems with my eyes, my mind seems to race...I feel as if I am loosing my mind in some respects. It seems that my body just crashes all of a sudden. The first time this happened, you may remember, I ended up in the hospital for a while. This time my doctor jumped right in and started me on IVSM. Steroids suck! Let's face it, but they get me through. After about a week or so of my body just flat out crashing, my needing to be on IVSM and this time oral steroids....then I start to feel a bit better. This seems to buy me some time until my next dose of Novantrone.

This time around I have a new symptom....extreme dizziness. I can't turn my head at all (not even slightly) without feeling as if I am going to fall completely over. Oh, and to look up or down...forget about it. My vocal fatigue and low-grade hearing loss continues and tomorrow I start speech therapy. Fortunately the vocal/hearing problems seem to come and go. I notice that the more overall fatigue I have the worse these symptoms also are.

So, is my MS continuing to progress despite the treatment? Maybe. What I can say is that even if I have some progression, I also recognize that I am responding (even if not for the full three months) to this medication and that is something! Especially for someone like me who responded so adversely to the other medications available. For me I feel that two good months every three is better than no good months at all. That is something to be happy about! :)

I hope all of you are doing well. Please take care of yourself!



Well, that's a bummer...or at least kinda/sorta good?!? I'm with you about the Novantrone wearing's a downer after feeling so good for a bit, to return to feeling crappy again.

May time fly by so you can get the "juice" as soon as possible! LOL

Linda D. in Seattle

mdmhvonpa said...

You take care too ... we are praying for you.

Jaime said...


It does suck to have it wear off, but 2 good months is better than no good months. And, as much as I dislike the IVSM it does help buy time.


Jaime said...

Thanks for the kind words. I appreciate the thoughts and prayers and keep you and all of the MS bloggers in my thoughts and prayers as well. Take care of yourself. I hope you are well.


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my life with MS (among other things).

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