Small HDC trial results

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

Postby chrishasms » Tue Jun 10, 2008 2:06 pm

Kyle congrads, you just showed us all your MS is doing great or it is at least doing good enough you don't need to find something else.

Folks, I assure you as we speak unknown to the newbie is that 8 different locations across the country are getting all the ducks in a row to do the exact same treatment JH is doing.

I say if and when it comes somewhere near, you should wait. I have always said if your MS is not bad enough to wat to get rid of it you shouldn't.

Please Kyle if you want to speak of secondary cancer risks and scare the hell out of people make sure you are not talking about high dose cytoxin, or cytoxin. ( Yes there is a difference between those and revimmune.) Please get your facts straight. I and all the others who now don't have active MS will tell you there is no increase risk and JH would have told us if there was.

Ya it sucks not feeling bad anymore ( NOT! ) I'm so glad I did the research and made an informed decision rather than listening to folks who think they know...AKA neuro's. When my neuro just learned of what I did he said, "Oh my this is different than what I thought you wanted to do!" The top MS doc in the Rocky Mountains lol. He had no clue lol.

This last 3 months of not having this shit disease has been worth it if I die tomorrow.
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Postby rainer » Tue Jun 10, 2008 2:48 pm

No doubt the "C" word is dangerous given what Bob said. And in that Hopkins article "High Time for HiCy" I believe it's called, there is a little side-bar on whether stopping disease progression for X amount of time is a "cure."

Obviously we would all love if a one time HiCy treatment stopped MS in its tracks forever 100% for everyone, period. It does not look like that's the case which sucks but was probably foreseeable given the nature of this damned disease.

All that said, HiCy still looks like one of the most promising treatments out there. If it becomes a "every X years" treatment and keeps MS at bay with dramatically more effectiveness then any drugs that have preceded it, I don't think people are going to be too upset.

I also think Bob is correct (for a change) :wink: in that the "cure" talk and the basing results off disability improvement is unfortunate and likely being done for garnering the attention of investors and media.
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Postby chrishasms » Tue Jun 10, 2008 3:40 pm

I know for sure the Rush Hospital in Chicago is completing the paperwork and JH is referring people from the Chicago area to them. They were supposed to already start but the paperwork with the FDA got waylaid I guess. Thank God it's not my job to keep up on it all. I have heard Stoneybrook is trying as well.

I have also heard National Jewish is in Denver form someone at National Jewish in Denver who is a friend of mine but refused to be on the record. Go snooping though. I know Chicago should have no issue's because Carrie is referring folk to them.

I also talked to 2 neuro's at the MS convention in Denver last week and they were from Alberta and BC respectively. They were fascinated and going to do all they could to try to be the first up there 'eh. (I have no clue where they were from hospital wise )

I love how the doctors who take the time to find out what I and others are doing come on board easily but the MS patients themselves are the ones with the issue! No doctor yelled at my site name change but MS people lost their friggin minds!

Why is it Doctors either want to get people better or want to keep you where you are. The neuro's from Canada were the first and most of us have neuro's that are the later.

Why is it that way with both of those statements? Is the people getting better those who have neuro's who think out of the box or is it the people who are doing the thinking?

I know my head hurts because I did mine.
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Postby pvns2005 » Tue Jun 10, 2008 4:28 pm

Well put Chris...

I go for HiCy Treatment the 23rd of June at JH and I will see first hand what it feels like to feel good again. Even if it's just for a year. That's my view on the whole thing. All I want is 10% back and I will be the happiest dude around. Fatigue SUCKS and I want it gone.

MS Be Gone...

Your MS Brother In Arms

Chris S.
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Postby Lyon » Tue Jun 10, 2008 5:57 pm

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Postby pvns2005 » Tue Jun 10, 2008 6:12 pm

WORD!!
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Postby chrishasms » Tue Jun 10, 2008 6:15 pm

Yup my disability is limited to the fact my worse day now is still not as bad as my best day in March.
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Postby rainer » Tue Jun 10, 2008 6:54 pm

My understanding: We do not know the long term effects of RevImmune positive or negative at this point. We do not know the relationship b/n inflammation and axonal death. We do know that RevImmune is dramatically more effective then the CRABS in the short term which is the reason people are optimistic.
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Postby Lyon » Tue Jun 10, 2008 6:59 pm

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Postby pvns2005 » Tue Jun 10, 2008 7:02 pm

WORD!!!
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Postby Lyon » Tue Jun 10, 2008 7:07 pm

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