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ThisIsMS.com :: View topic - rebooting at JHH
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rebooting at JHH
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Post new topic   Reply to topic    ThisIsMS.com Forum Index -> Revimmune (cyclophosphamide or cytoxan)
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chrishasms
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Joined: Sep 15, 2006
Posts: 337

PostPosted: Sat May 17, 2008 2:42 pm    Post subject: Reply with quote

Every white blood cell you got is toast. B Cell, T Cell and if they exist in white blood -xyz cells lol.
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Lyon
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Joined: May 04, 2006
Posts: 3138
Location: Mid-Michigan

PostPosted: Sat May 17, 2008 4:36 pm    Post subject: Reply with quote

mrhodes40 wrote:
since we are on the subject, are the b cells killed in treatment as well? just curious.
Yes, all the white blood cells are killed in the process. T and B cells.
Bob
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Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
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777
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Joined: Mar 02, 2008
Posts: 83
Location: Lake Bodom, Finland

PostPosted: Sat May 17, 2008 4:51 pm    Post subject: Reply with quote

Lyon wrote:
mrhodes40 wrote:
since we are on the subject, are the b cells killed in treatment as well? just curious.
Yes, all the white blood cells are killed in the process. T and B cells.
Bob


Is that a good thing? What is the importance of theT and B cells?
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chrishasms
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Joined: Sep 15, 2006
Posts: 337

PostPosted: Sat May 17, 2008 5:15 pm    Post subject: Reply with quote

That is the cells MS lives in. By killing off those cells and letting your bone marrows' stem cells rebuild your immune system (AKA T- Cells and B-cells) without the bad influence of cells that think MS is OK, you now don't have MS.
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Lyon
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Joined: May 04, 2006
Posts: 3138
Location: Mid-Michigan

PostPosted: Sat May 17, 2008 5:26 pm    Post subject: Reply with quote

777 wrote:
Is that a good thing? What is the importance of the T and B cells?
Probably the best thing would be more specific, but at this point and considering the alternatives, yes it's a good thing.
777 wrote:
What is the importance of the T and B cells?
In reality the immune system constitutes a multitude of factors from the ph of your skin to the salt in your saliva, but in the world of MS the immune system is restricted to the T and B cells.

I kind of think of the B cells as the "chiefs" because they train the T cells to attack the myelin and the T cells as the Indians because they are the ones which actually attack the myelin.

That is the reason that Tovaxin is an ongoing process. You can eliminate the T cells which have been trained to attack the myelin, but the B cells are going to keep training new T cells.

Interesting subject. That's why I think Rituximab and Tovaxin would be a good combo. Treat someone with Tovaxin a few times to eliminate the mrtcs and hit them with a high dose of Rituximab to eliminate the B cells which keep training the mrtcs. Less offensive than HDC with the same end result.

Bob
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mrhodes40
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Joined: Sep 24, 2004
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Location: Washington USA

PostPosted: Sat May 17, 2008 6:35 pm    Post subject: Reply with quote

I asked because EBV lives in b cells forever once it has been contacted. Since a considerable amount of MS research seems to keep looking at that, I wondered if the EBV is gone as well and thought it might ossibly be another reason for effective therapy

My bias is that MS is probably not autoimmune--No don't argue with me, I realize some of us...Lyon....have good research to back up the other side but I still remain in the side of Behan and Chaudhuri

But taht doesn't mean something like this might not be very effective but for reasons other than we think. Very Happy

I like it cause it seems to work in the small studies I saw (if you know more post on the research thread I started please) , it is not something with long term impact on your body, and I am all out of wait! EDSS 6, thank you very much, I have to do something and this seems pretty safe to me personally
marie
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Lyon
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Joined: May 04, 2006
Posts: 3138
Location: Mid-Michigan

PostPosted: Sat May 17, 2008 6:44 pm    Post subject: Reply with quote

mrhodes40 wrote:
I am all out of wait! EDSS 6, thank you very much, I have to do something and this seems pretty safe to me personally
marie
I don't like the situation, but I do like your way of putting it! "I'm all out of wait" sounds like a solid, sensible way of putting it.

If I were in your situation, at this time, I'd beg, borrow or steal for the chance to let JH poison me. I'm sure I don't need to tell you that it would have been preferable to have had the option at a 1 or 2 EDSS.

Bob
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777
Family Member


Joined: Mar 02, 2008
Posts: 83
Location: Lake Bodom, Finland

PostPosted: Sat May 17, 2008 7:19 pm    Post subject: Reply with quote

mrhodes40 wrote:
I asked because EBV lives in b cells forever once it has been contacted. Since a considerable amount of MS research seems to keep looking at that, I wondered if the EBV is gone as well and thought it might ossibly be another reason for effective therapy

My bias is that MS is probably not autoimmune--No don't argue with me, I realize some of us...Lyon....have good research to back up the other side but I still remain in the side of Behan and Chaudhuri

But taht doesn't mean something like this might not be very effective but for reasons other than we think. Very Happy

I like it cause it seems to work in the small studies I saw (if you know more post on the research thread I started please) , it is not something with long term impact on your body, and I am all out of wait! EDSS 6, thank you very much, I have to do something and this seems pretty safe to me personally
marie


whats stopping you? have you sent in your records to JH?
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mrhodes40
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Joined: Sep 24, 2004
Posts: 368
Location: Washington USA

PostPosted: Sun May 18, 2008 1:21 pm    Post subject: Reply with quote

I am only just learning about this treatment! I am likely to go for it, it does not frighten me at all. I was much more worried about heart damage from novantrone or ongoing immunosppression from things like tysabri than I am about this approach.

Yes an EDSS 2 would be better we'd have to go back in time for that. My neuro (who just went to Stanford, so left my area) who was the director of a large Seattle MS clinic and who was running a tovaxin trial told me that the minority of patients have MRTC and that it is not going to be as useful as hoped because of that. He did not offer to let me in the trial, I am too "well controlled" on Copaxone and too far down the path. My "well controlled" is about my lovely MRIs...nary an inflammation insight, no brain atrophy at all, no new lesions. I just have this troubling little problem of deteriorating motor funciton. I did try to go off Cop and had an old fashioned exacerbation.

Those of you diagnosed in these days are fortunate, you have options I just did not.
marie
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robbie
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Joined: Jan 28, 2005
Posts: 658
Location: Northern Ontario, Canada

PostPosted: Sun May 18, 2008 1:40 pm    Post subject: Reply with quote

Quote:
Those of you diagnosed in these days are fortunate, you have options I just did not.
marie

yes
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packedby776
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Joined: Apr 18, 2008
Posts: 74
Location: Boston, MA

PostPosted: Sun May 25, 2008 11:37 am    Post subject: Reply with quote

Davis,

Thank you so much for keeping us posted. Please continue to do so.

Much Love,
V. Very Happy
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Jamie
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Joined: Jan 08, 2008
Posts: 127

PostPosted: Thu May 29, 2008 5:51 pm    Post subject: Reply with quote

You seem to have had it a lot harder with the counts than Mel.

I'm glad things have rebounded well though eventually.

You'll be tired for a long while yet but hopefully it's worth it.
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