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Board index » Treatments » Revimmune (cyclophosphamide or cytoxan)

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L
 Post subject: Original HiCyers
PostPosted: Sun Dec 14, 2008 12:39 pm 
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Sorry to hear the bad news Keri and Chris. Glad to hear that Mel's MRI turned out ok.

Could anyone who is in touch with Dr Kerr or Dr Gladstone please find out how the partcipents of the original Johns Hopkins and Stony Brooks trials are faring now? It would shed a lot of light on the speculations surrounding reactivation.

Thanks!
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RedPenguins
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PostPosted: Sun Dec 14, 2008 5:15 pm 
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The last article that was published in June discusses the original 9 patients at Hopkins at 2 years out...and Dr. Kerr had given me the data re: 4 yrs out for some.

I don't have it handy on this computer that I'm using....so I can't help with the specifics...but it seemed that out of all 9, none had an increase on the disability scale and most had a decrease in disability.

At 4yrs out, I think 5 out of 9 were not on any additional meds nor had any activity with the MS. (I can't remember the exact specifics - but I think at 4yrs it was 5 out of 9 on nothing. At 2yrs, 6 out of 9 were on nothing else.)

I truly hoped to get at least a year and am still besides myself that I have a new active lesion at only 5 months out.

Sigh.

Now we wait.

Have I ever mentioned here that I don't like to wait? Oh yes, I did....(and pissed off some people when I did!)

~K
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L
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PostPosted: Mon Dec 15, 2008 2:27 pm 
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Thanks so much for that Keri. It must feel like such a huge disappointment I know but stay positive. It's easier said than done. Keep fighting though and you'll get through all this.

Perhaps one of those from the nine was patient number three? Looking at the trial data, they went from having a dozen GELs at the time of treatment to 0 directly after treatment. Then they had 1 new GEL at 6 months, then 0 again at 12 months, 1 again at 20 months and back to zero at 24 months.

In fact, there aren't five people in the study that had no new GELs after the treatment - only four of the nine had all GELs eradicated and had no new ones as of 24 months. So at least one person who ended up disease free at four years experienced a new GEL after the treatment. Perhaps a new GEL does not necessarily mean that the treatment has failed.
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chrishasms
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PostPosted: Tue Dec 16, 2008 9:47 am 
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Agreed. It's why we are waiting until my March MRI to make a decision as to if we need to retreat.

I hate to say this....I am sure we will be.
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Xenu
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PostPosted: Sun Dec 21, 2008 12:52 pm 
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Crap....3 of you have reactivated now???

That's not so good....
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RedPenguins
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PostPosted: Mon Dec 22, 2008 12:44 am 
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Interesting to know that someone who did "reactivate" is now doing okay. As most of you know by now, I hate waiting to see what is going to happen. I think I just feel that I'm "new" enough to the disability that I may have a greater chance of beating it sooner than later.

I guess this is all just scaring the crap out of me....and truthfully, I look forward (in a warped way) to being re-treated and making sure that "it is all gone" - get any last buggers hanging around in my immune system. Let them use me as a guinea pig to just over process me and knock me down. I will wear it with a badge of honor!!

I will know more in January....but so far, if they offer it to me to do again, I plan on doing it, sooner than later. I've had 4.5 months nearly free after spending the previous 6 months declining daily and doing horribly. I'm so afraid that I'm heading back there, though I know it is too soon to tell, but it's hard not to be worried. Trying to be positive but I don't know how to do that when I've had to pull out my cane since not having to use its since July.

~Keri
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HiCy
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PostPosted: Mon Dec 22, 2008 8:46 pm 
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To all,

Since I was the original HiCyer on this thread I figured I would drop a line. I just went through my 15 month check up. I skipped the MRI but all my symptoms are stable. Some things are better but some things feel worse so I am not really sure how to measure the progress if any. JH is happy with how I am doing but we both agree that any substantial improvement is only going to happen over time and with hard physical rehap type work.

I am still wondering about the possibility of SP and the disability progressions due to sodium channels. Dr. Kerr does not believe this is the case with me but my other neuro does. They just completed a study in which they used approved epilepsy drugs known to be sodium channel blockers to see if they could stop the progression in SP. The study was done in London and will be published in April. That is a topic for another forum discussion.

The one thing that we all must realize is as much as the JH staff knows about this process they really don't have much of a track record for people after the HiCy treatment and how the immune system may or may not heal. This fact is depressing but also gives hope that things could be better.

Good luck to all of you with the minor setbacks and to those who are reacting more favorably to this process.

HiCy
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Board index » Treatments » Revimmune (cyclophosphamide or cytoxan)

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