Change Of Plans
 

Well, it looks like there's not going to be a baclofen pump for me any time soon. Just got my latest MRI results and there's been a lot of progression despite Rebif and Tysabri. I'm starting my Novantrone work-up tomorrow.

The plan is to have my muga scan to get my heart approved, have a portacath inserted (bad IV history) and get going on Novantrone ASAP.

My neuro intends to do 5 infusions, 3 months apart and follow-up with Copaxone in the end. I hope this works to stop my progression for a while.

Sorry to hear about the progression, weeble. :(

Novantrone, eh? I have heard some people say that this has really helped them a lot during the process of taking it. I hope you are a candidate, and it works for you too.

Did you happen to mention Revimmune/HiCy to your neuro? I don't know if our medical system would pay to have the procedure in the US, but it seems like it might be a very good option for you . . .?

Cherie

sorry for the turn of events weeb.

i hope the new drug will benefit you and turn things around.
wishing you con't good healing thoughts and prayers.

blood work is all good, and passed my MUGA scan (heart study) today with flying colors. Now to wait for my portacath.

No Cherie, I'm not a good candidate for HYCY because I don't have much inflammatory activity (only 1 questionably enhancing lesion) on my MRI:Dunno:. Same as the ASCT in Ottawa. Not great success rates without the right looking MRI.

Wow, Weebs, navatrone..Yuck, Yuck. It has worked for some peeps, though, but please know that there are some bad side effects that go with it. It's one of those meds, that, you have to weigh the benefits against the possible dangers.

I hope it is the right decision for you, and my best wishes..:hug::hug::hug:

Thanks Sally. I've always been one to do my homework. I am very aware of the risk of opportunistic infection, heart failure, liver damage, leukemia, and lymphoma. Unfortunately, the problems I'm having with my brainstem lesions outweigh these risks. I certainly wish this could just all go away, but that's just not happening.

Thanks so much for all those :hug: I'll keep you posted as my chemo nears, probably near end of October.

Weeble,
I don't think there's one treatment that comes without a risk. Shoot. my daily meds. have written protocols with "mights", thay scared me to death first time I read them. We all know people that did Novantrone with great results, some who couldn't. Like everything in this carppy disease, you never know until you try. You gotta try. Good luck and Go-Girl.

Many people have had good results with Novantrone. Jim didn't but that was because it was so new there wasn't much information as far as side effects go. Just one to mention is UTI's. Jim was in kidney failure one month after his first infusion. It could have been avoided, we think, if they had noticed that the pain, swelling and fevers were from a UTI, not ms. He was being treated for a ms exacerbation when it should have been for a UTI. Just a heads up for you. Like Kicker said, all drugs have side effects.

I was all excited about the pump. Jim's spasms are terrible and he's mentioned the pump recently.

Good luck and let us know how you do. :hug: