Re-dosing

A board to discuss Revimmune as a potential therapy for multiple sclerosis

Re-dosing

Postby RedPenguins » Mon Mar 09, 2009 5:04 pm

Hi Everyone,

Well, it's a go. I'm on schedule to re-dose at the end of April. Still not 1000% positive of this choice - mainly b/c pulling it all together seems like much more of a hurdle this time. I may have to hire "help" to be with me. :(

I had a MRI on Friday. It did not show any enhancing lesions and the previous one from December was slightly smaller - so that was good news. Of course, it doesn't account for the problems I've been having. The steroids did seem to help quite a bit though. But glad they are over with now!! They make me way nutty.

Insurance has already approved the redosing. They certainly moved fast this time! they have openings in April - but in May they get busy again, so it looks like if I'm moving forward, it is April. I'm a little scared b/c I think the risks increase.

Still waiting to hear from Dr. Brodsky re: an appointment. But the plan was to see Brodsky and the neuros on the same trip as the treatment - as opposed to making an extra trip.

I did ask a bunch of questions that really are for the oncologists and not the neuros. Still waiting for answers on those.

Ho hum.

~Keri
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Postby chrishasms » Mon Mar 09, 2009 5:14 pm

Well that is the shits. Well, you will be the second person to re-dose and I am not 100% sure I won't be there again someday. We'll see what happens with PT and these other symptoms.

I've talked with Doc B through an email once and he said there is no more risk with the HiCy with more than one dosing so don't worry.
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Postby RedPenguins » Mon Mar 09, 2009 5:17 pm

Thanks, Chris.

I'm trying to think of this as positive - as we get to go back in and re-clean and get it ALL....leave no stone unturned, ya know?

Not thrilled about having to pause my life for 4 weeks again...don't know if my practice can withstand it. That is one major concern of mine. Also don't have enough caretakers available to me at this time...and I fear that this time the chemo will leave me flat on my back and I'll be so sick and by myself. That is not a lovely thought for me.

Oh, also sad b/c last time I knew a whole bunch of people going thru it at same time - and now? We don't hear of anyone....?? What gives?

I just don't know of many other options other than just sitting and waiting to see what happens. (Right now I am on Copaxone.) I could go back on Tysabri, but I think I was allergic to it - and the risk of the JC virus/PML is higher b/c I had chemotherapy. Interferons are not an option for me due to terrible depression. I suppose I could do the regular chemo options but they don't boast much of a result. Five relapses in one year...I just don't think sitting and just using copaxone is the answer....but no one has any other answers. I did ask the neuros about using a double-dose of copax, but when I asked in the past, they didn't think it would make much of a difference....so not sure anything has changed on that front.

~Keri
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Postby chrishasms » Mon Mar 09, 2009 7:01 pm

I know they are still putting people through there but they are not necessarily tech savy...I will call them tomorrow and see if they can suggest people come to this.
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Postby RedPenguins » Mon Mar 09, 2009 11:04 pm

Thanks, Chris.
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Postby patientx » Tue Mar 10, 2009 6:34 am

Keri,

When you say you might have to hire help and that you might have trouble rounding up caretakers, what type of help do you need when going through this? Is it round-the-clock care? And for how long?
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Postby barbbelle » Wed Mar 11, 2009 10:20 am

Keri~
Continue to think positively and know that I'm still prayin for you!! I mean it......This time you know what to expect and you will be ready for it. Yes, it may be tougher for you this time around, but you can definitely handle anything that is thrown at you! Can't your friends go this time? I had different shifts of people. I had one friend for the week in the hospital and one for the 2 weeks at the apartment. Then, kids and husband filled in between. BUT, I live 4 hrs away.......not on the other side of the country! Do you have anyone that you trust to run the business? I know that has to be a worry. I have emailed you multiple times and never heard from you, so I must have the wrong address for you. Sorry about that! When you find out the date in April, can you let us know? My reck is April 8. I will come see how you are if you are in yet! Hang in, girl!!!
Barb
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