starting this week, few questions...

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

starting this week, few questions...

Postby jackson233 » Sun Oct 03, 2010 3:25 pm

Hi everyone,

I am starting therapy in the coming weeks and had a few simple questions about the therapy. I understand that my 'infusions' will take place over a 7-8 day period during which I will be an inpatient at the hospital... how is the drug administered? Obviously intervenously, but central line pick or large arm vein? Also, in the late 80's patients where catheterized to ensure that their bladders were completed void of urine during treatment, is this still the case? Also, any advice on dental care during/after treatment? I understand that dental hygiene is very important for cancer patients receiving chemo and can be a source of infection.

Thanks for any insight you can share!
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Postby Axiom » Tue Oct 05, 2010 10:46 am

I thought I read that revimmune treatment had been stopped at JH, and I haven't seen any info about the study at Rush for ages, is that still ongoing?

So I guess combined with how quiet this section of the board has been, I didn't realize revimmune treatment was even currently available anywhere.

7-8 days for the chemo phase is longer than I'm familiar with, and I'm sure standard protocol varies by location, but I'll try to share what I know about how things were done at JH and hope that helps.

Hickman line for meds, no bladder catheter unless necessary otherwise or at the patients' request, and super soft toothbrushes for dental care.

Good luck with your treatment!
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thanks Axiom!

Postby jackson233 » Tue Oct 05, 2010 1:21 pm

I'm actually having the treatment in Toronto by a neurologist who had training at JH. It's a last ditch effort to halt my progression.

Thanks for the info... I think my infusions are stretched over 6 days but I am an inpatient for 8 days (lab work etc?). I have read surprisingly good things about the 'Hickman'. At first the thought scared the hell out of me (I had spent my career pulling them out of dead people and always thought, jesus I hope I never need one of those!), but now I realize it is probably a blessing. Glad they aren't likely to do a urinary catheter!
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Postby criptastic » Thu Oct 07, 2010 6:45 am

I am in the process of being scheduled for a reboot as well. My protocol will be the typical Hopkins one, although trips in for labs won't be daily and I may be allowed to do my own Neupogen injections at home!



Best of luck to you, Jackson!
Last edited by criptastic on Wed Oct 20, 2010 8:38 am, edited 1 time in total.
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thanks

Postby jackson233 » Thu Oct 07, 2010 6:56 am

Thanks Cript, best of luck to you too! My protocol will be 5-6 days of infusions in hospital and then monthly boosters as an outpatient, which brings up a new question from me...

Are they likely to leave my Hickman Catheter in for my monthly boosters?
Fame has sent a number of celebrities off the deep end, and in the case of Michael Jackson, to the kiddy pool. <br /><div><br /></div><div>Bill Maher</div>
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Postby criptastic » Thu Oct 07, 2010 11:54 am

Well, it doesn't sound like you're getting the revimmune protocol because there are no monthly boosters with that. You must be doing a modified cytoxan treatment regimen.

As for the Hickman, I have no idea. I have a medi-port, implanted, so will use that. They were all very excited to see my port yesterday. LOL

Crip
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not sure...

Postby jackson233 » Thu Oct 07, 2010 12:04 pm

Not sure exactly what it is but was told it is a high-dose cyclophosphamide (a la John Hopkins influence) and the monthly boosters are something they recently added to the protocol? Oh well, just starting to get anxious I guess.

How do you like the medi-port Crip, is it uncomfortable?
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Postby criptastic » Thu Oct 07, 2010 12:21 pm

Mediport is good. I've had it since 2001. Again, good luck and keep us (ME) posted. We seem to be the only active posters here for a good while!

Crip
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