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cytoxan therapy

Posted: Fri Apr 10, 2009 7:55 am
by MNManWithMS
I've been all fo the FDA-approved drug therapies and received no positive benefits. My neurologist mentioned Cytoxan and I really like the idea of that. He also wants me to use Copaxone with it.I'd be game, but I'll have to pay almost 2k a month for that. That's cost-prohibitive for us. I'd like to hear from people who've used Cytoxan alone or with another affordable drug.

Posted: Fri Apr 10, 2009 4:06 pm
by chrishasms
Did he mention Cytoxan or High Dose Cytoxan?

Posted: Fri Apr 10, 2009 4:26 pm
by MNManWithMS
I don't recall hearing 'high dose'.

Posted: Fri Apr 10, 2009 5:02 pm
by chrishasms
OK, this is for the High Dose Cyclophosphamide. This is the one that reboots the immune system completely, following up with Copaxone as a vaccine.

Regular Cytoxan is just a pulsed version done over time to suppress the immune system.

Did he mention rebooting, immune ablation, or just cytoxan?

Posted: Fri Apr 10, 2009 6:25 pm
by MNManWithMS
I was asking him about stem cell transplants and he said this was a safer way to sort of do the same thing. He wants both the Cytoxan and Copaxone. His nurse is starting to schedule an MRI and having someone call me to get a financial break on the Copaxone, then I'll schedulue with an oncologist.

Posted: Sat Apr 11, 2009 5:53 am
by Lyon
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Posted: Sat Apr 11, 2009 7:41 am
by chrishasms
I hear ya Bob. I'm trying to figure out which way his doctor is going here. I am trying to figure out if he's for the immune ablation but if the guy is looking at Cytoxan, with the Copaxone, maybe he is?

I've never heard of Copaxone with the pulsed version.

Posted: Sat Apr 11, 2009 7:43 am
by MNManWithMS
He's one of the top MS doctors in the state and I always see his interviews in the MS magazines and papers--his name is Dr. Gary Birnbaum and he only works with MS. I feel he is very up-to date on MS. He speaks at various events in the state and runs clinical trials.

Posted: Sat Apr 11, 2009 7:48 am
by patientx
chrishasms wrote:I hear ya Bob. I'm trying to figure out which way his doctor is going here. I am trying to figure out if he's for the immune ablation but if the guy is looking at Cytoxan, with the Copaxone, maybe he is?

I've never heard of Copaxone with the pulsed version.
I've heard of cases where the disease is aggressive, so doctors give someone a dose of chemo to stop any inflammation that's going on, then have the patient continue with a maintenance med (one of the CRABs). In this case, it's not the same as ablation, like with Revimmune.


So, I think you're right, Chris. It's important to find out if this is actually immune ablation, or a lighter dose of chemo.

Posted: Sat Apr 11, 2009 7:53 am
by Lyon
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Posted: Sat Apr 11, 2009 8:07 am
by chrishasms
Ok this guy seems pretty good.

Ask him if he means a pulsed version of Cytoxan, or immune ablation with it.

See the immune ablation is a stem cell transplant in effect without actually doing it. When your doc mentioned that it's why I wondered what form of Cytoxan he means. Pulsed isn't the same but the ablation is.

Posted: Sat Apr 11, 2009 8:39 am
by Lyon
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Posted: Sat Apr 11, 2009 8:54 am
by MNManWithMS
I'm excited to use both drugs and don't have any reservations about either drug. The Copaxone is just too expensive for me, so I was curious to hear if anyone's had experience using another therapy with the Cytoxan or just used Cytoxan by itself and what their experience has been. I've already decided that I would do both, if I could afford it.
I do appreciate the interest you two have shown. I must not have been very clear about the information I was interested in.

Posted: Sat Apr 11, 2009 9:29 am
by MNManWithMS
I was never offered different choices, so I'm comfortable taking whatever I can in that arena. I'll do some research on both once I ge on my treatment, though.

Posted: Sun Apr 12, 2009 10:29 am
by chrishasms
OK you need to call your neuro and ask him Monday if he wants to do Dr. Brodsky's High Dose Cytoxan protocol, or if he wants to do the pulsed version.

If he says the pulsed version, tell him you want to do Dr. Brodsky's method. Then see his response. I already feel fairly confident he is referring to his procedure already so then you just end up really smart looking.

Please let us know what he says.