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Old 04-26-2008, 01:48 AM #11
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Thanks, Victor. I'm going to have someone I know see if she can pull those articles and get me access to them. I will also keep in mind that the most recent of those articles is 6 yrs old... Lots has happened in 6 yrs... just a point to keep in mind, right?

Koala - from what I have found out - and I'm just outlining it in roughest of forms:

The treatment itself involves 4 days in the hospital - receiving high doses of the chemo drug (cyclophosphamide). After the four days, you are released from the hospital - but must remain inside - you stay close to JH and return daily to have your blood tested. You will be on antibiotics and I think possibly anti-virals or some other meds. Your white blood count will drop to practically nil. Your red counts will also drop. Somewhere in here you start receiving another med to raise your counts back up. You are monitored daily by JH. You stay by JH for 21 days after tx before you can return home (presuming all goes well).

So, basically, they kill your old immune system (except for stem cells apparently). Then they believe it will re-boot - and MS activity will no longer continue.

I've read the blog of someone who had the tx in March. It doesn't sound fun - it's chemo! Your immunity is being killed off. I think that 12 months post tx, you receive your childhood vaccines again.

Obviously, that is a VERY pared down explanation of the tx.

Did you read the link I posted?


Also, you can check out: www.chrishasms.com - he had the tx - this is his blog.

~k
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Old 04-26-2008, 01:57 AM #12
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OK Thanks. I've heard of something very similar to this before. Not quite the same, but similar.

I have a vague recollection about a procedure involving the removal of bone marrow, giving the person involved chemo, and after a certain period of time, returning the bone marrow back to the person.

If I could remember the circumstances, I could probably bring up references, but unfortunately my MS brain is in "dead" mode today.

It sounds familiar, but the brain ain't doing what it's meant to, and I could be totally off course.

I'd have probably been of more use if I'd said nothing at all. Sorry.
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Old 04-26-2008, 02:08 AM #13
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Default You made me smile!

Oh, Koala, don't be so down on yourself. You were of great use just now - you made me smile My brain doesn't work well at all - which is why I keep posting that I'm not sure I'm describing any of this accurately! (I always tell people to check things out themselves - don't trust my hole-y brain)

I've heard of the treatment you're mentioning, but it is different than this one. What you describe is kinda what my mom had done 18 yrs ago - as an autologous bone marrow transplant.

With the HiCy, they aren't touching our bone marrow.

~k
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Old 04-26-2008, 02:41 AM #14
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Aww. Thank you RedPenguins. I knew it all sounded a bit familiar.

Don't ya just hate it when the brain remembers bits and pieces, but not quite enough to put the whole gigsaw together!

And...for some reason my brain just told me there's a "z" in gigsaw some where, but I can't for the life of me find where. I know.......A brain dead day for me!!
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Old 04-26-2008, 08:22 AM #15
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Quote:
Originally Posted by Victor H View Post
b) the high liklihood that even after the immune system is restored, whatever causes MS will eventually just start again, thereby making this approach just a delaying process with very high risks."
-Vic
Vic, this makes perfect sense.

Even if Revimmune helps temporarily since the cause of MS is still unknown how can Revimmune help any better than current safer treatments which are also used for delaying progression.

Just my personal opinion - There has to be more understanding of MS and the cause(s) of MS before there can be any long term consistant solution.

Keri, I really know nothing about Revimmune but I do know quite a bit about MS. If you choose to go with Revimmune I really wish you well. But, the reality of MS - there is no quick fix or guarantee.
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Old 04-26-2008, 10:33 AM #16
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Default Here are some links to articles about RevImmune

http://news.moneycentral.msn.com/tic...87&Symbol=ABPI

http://www.medicalnewstoday.com/articles/64250.php

http://phx.corporate-ir.net/phoenix....8375&highlight=

http://www.accentia.net/science/revimmune.php

http://medicineworld.org/cancer/lead...actory-ms.html
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Old 04-26-2008, 11:44 AM #17
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Many good wishes and much good luck, with whatever your choice of treatment, Keri..

But.....Please be careful out there..
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Old 04-26-2008, 03:48 PM #18
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Default Thank you...

Koala - I can understand why jigsaw would seem to have a Z in it...b/c a jigsaw "teeth prints" look kinda like a z. Makes sense to me!

Snoopy - I hear your concerns and they make perfect sense.

Like I said, I'm still in the investigational stages of looking into this program at JH. It sounds very promising. It also sounds hecka scary, to put it mildly. There are risks. All of the txs out there for MS have risks, some greater than others. Sometimes it comes down to if the benefits outweigh the risks. For me, the jury is still out on HiCy/Revimmune. Just like my decision to go on Tysabri - the benefits DO outweigh the risks, for me, in my opinion, regarding my health. Just like all the other txs, it isn't for everyone. To be honest, the interferons scare me way more than Tysabri does. My choice, my body. It's nice we live in a world where we can sometimes make some choices, especially since we have little choice in regards to this cruddy disease (in my opinion).

I will continue to research this - meanwhile, I am scheduled for my second Ty infusion on May 9 (barring them cancelling on my again!).

Snoopy, I don't know if we necessarily need to know the official cause - because IF wiping out the immune system wipes out the "memory" of our white cells attacking ourselves....or if the white cells are reprogrammed and whatever caused them to turn on us, so to speak, would not be triggered, then it wouldn't matter in terms of this treatment. Of course, since we don't know what triggers MS - it could happen again. Or not. We don't know yet. Sure, it's good to know, but what if we never know and this is as good as it gets - a starting over period. Again, I said IF - it is a BIG IF....there is some data on this tx....there could be a lot more. Someone has to be the guinea pig, right? Not saying it's me... but I don't know if I'd ever be able to forgive myself IF this turns out to be "IT" and I don't take the chance. But again, no decisions yet. It isn't hurting me to research it and see what it would entail and IF I'd even qualify for this.

Cheryl - thanks for the links! I'm going to check them out, along with the ones Victor sent.... though, with Victor's, I need to keep in mind that those articles are "old".

Sally - thank you - and YES, I will be most careful.

Again, risks vs benefits, is what it comes down to for me.

Tysabri boasts a 67% chance of less relapses and a slowing of disease progression, whereas the CRABS say 33% (my #s are probably off - but I think close enough for an example). But what if HiCy might have a 90% chance of fewer relapses and/or a complete stopping of disease progression and/or repairing of damage done. Is it worth the risk of death - I don't know. I don't know what they are officially claiming - and I need to find that out and talk to more people; I'm still in the research phase....just as I researched Tysabri - and to me, the benefits outweighed the risks with that.

~keri
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Old 04-26-2008, 07:21 PM #19
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Quote:
Originally Posted by RedPenguins View Post
Koala - I can understand why jigsaw would seem to have a Z in it...b/c a jigsaw "teeth prints" look kinda like a z. Makes sense to me!

ROFLMAO......A "Z" in "gigsaw"? I daresay I meant a "J", well I hope I did anyway, having spelt it the way I did. I am usually able to spell very well but yesterday was a bad day! I told you I was brain dead!

Hopefully today will be a better day for me. (it's morning here).
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