Someone other than Chris

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

Postby cheerleader » Wed Dec 03, 2008 1:24 pm

mommasan wrote:One more thought. Even healthy people have mylein-reactive t-cells. But their blood brain barrier is not breached due to MS. Ours is. So, even if we retain a modest level of autoimmunity, we can have damage. Hopefully someone with more of a scientific brain cam chime in on this.

Sandy


Sandy...you're right about the blood brain barrier. There are many researchers and scientists working on this right now. Professor Kenneth Smith of Kings College in London, Dr. Berislav Zlokovic of the University of Rochester and Dr. Endemann of the Canadian Institute of Health Research in Montreal are all looking at the cerebral endothelium (the molecular lining of the blood vessels), and how shifts in nitric oxide and free radicals can lead to a breech in the BBB and neurodegenerative disease. Molecular medicine is on the way, (but until then, we can do alot to help heal the endothelium. I've written about it in pdf form on the regimen section, based on current research.)

My heart goes out to all of you who have received the revimmune treatment as you wait for results. Johns Hopkins is an amazing place, and I know you are all in the best hands. Hang in there, and thank you all for sharing your experiences with the rest of us-
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Wed Dec 03, 2008 2:35 pm

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Last edited by Lyon on Sun May 08, 2011 7:19 pm, edited 1 time in total.
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Postby patientx » Wed Dec 03, 2008 6:26 pm

One more thought. Even healthy people have mylein-reactive t-cells. But their blood brain barrier is not breached due to MS. Ours is. So, even if we retain a modest level of autoimmunity, we can have damage. Hopefully someone with more of a scientific brain cam chime in on this.


If I'm not mistaken, the mechanism of Tysabri is to prevent white blood cells from infiltrating the blood brain barrier. So, it would seem a breakdown of the BBB is involved somehow.
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Postby RedPenguins » Thu Dec 04, 2008 2:18 am

Yes, it's totally done to body weight....in which case, I should have been given a few barrels full of the stuff! 8O Although, I really had NO effect from the chemo - NONE. Didn't get sick for a moment of the treatment. I was up and walking around the hospital (okay, in wheelchair due to MS stuff) right after the IV was finished. In fact, I'd often have to bug the nurses to come in and take off the finished bag - as you couldn't walk around the hospital with that still hanging on the IV pole.

BEFORE I CONTINUE - I'm not saying ANY of this to "brag" - in fact - it more freaks me out that somehow I didn't get the right dosage as my experience with the tx seems so unusual.

On Night 3 of the chemo - I even tempted fate purposely trying to have a reaction - we went to the fast food place in the hospital and ordered the greasiest, nastiest food. Even that didn't make me sick!

I thought the entire time that they didn't give me the right dosage - and even joked with the nurses a few times that maybe they left a digit off the number and mixed the juice according to the wrong number. Add to that that my numbers dropped slowly and never hit zero. I also raised somewhat quickly and they sent me home when I was at about 5,000 WBC. At that point, I ended up leaving in a shorter amount of time than any other of the previous 25 people who had the treatment (at least that is what I was told).

No one had any explanation as to why the chemo didn't even phase me on a miniscule level. The nurses were very shocked. We all sat in my room and chatted. One day, my friends and I popped some popcorn and watched a movie on the computer! When I was released from the hospital and back at the apartment, my apartment was the hangout for the other caregivers that were staying in the building (Chris S.' friend Val hung out with us, as did another wife of a person receiving tx). They sat and did their nails and drank wine. It was like a party every night.

I have often said that if my hair hadn't fallen out - I would NOT believe that it was chemo at all.

I am trying not to be nervous....but it's hard....although, it just gives me all the more reason to get off my behind and live life a little more since I can.

*I should also mention that I am a BIG baby (or have the penchant to be a big baby) and so everyone who knew me expected that it would be a horrendous experience for all of us....and it wasn't. The only thought the nurses came up with was that I had a positive attitude! Now that is funny. :lol:

So - time will tell for all of us. I am in agreement with Chris - it was worth everything (for me it was the financial hit - not so much the physical)....and would do it again in a heart beat. However, as long as my hands don't go numb too much, I will keep my fingers crossed that none of us will need this again.

~Keri
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