Another alemtuzamab labrat

A board to discuss the soon-to-be released drug Campath as a treatment for Multiple Sclerosis

Postby Lyon » Fri Feb 26, 2010 2:15 pm

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Postby ssmme » Sun Feb 28, 2010 12:16 pm

I guess since my counts have been steady (not climbing) since month three post treatment, I would have expected to hear sooner that I would be precluded from re-treatment. Some information making me aware of my extremely low lymphocyte count seems to be something I would/should have been told. This is my life on the line. I'm not just a little low on lymphocyte. I hardly have any.

No one ever said anything - geez - if I had known I might have thought twice about going to Haiti a couple of weeks ago. Maybe I wouldn't have eaten sushi a month ago or visited a friend with an infectious disease at the hospital in January.
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Postby Lyon » Sun Feb 28, 2010 1:12 pm

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Postby ssmme » Sun Feb 28, 2010 2:02 pm

You're right Bob. I was given every indication that everything was progressing as expected. I won't take their word for it any more. I'll ask for facts to back it up every time I have a study visit. I'll have them explain my counts every time too.

Thanks for the information on low lymphocyte counts. It doesn't directly answer my question but it gave me even more questions to ask my study site coordinator and doctor.

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Postby Lyon » Sun Feb 28, 2010 2:50 pm

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Postby ssmme » Sun Feb 28, 2010 4:41 pm

I'm going to talk to them tomorrow. As a matter of fact, I'm going in even though I have no appointment and I'm going to ask questions. But every visit from now on will be full of questions so that no assumptions are made by me and nothing is overlooked by them.
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Postby Lyon » Sun Feb 28, 2010 4:49 pm

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Postby ssmme » Thu Mar 04, 2010 3:58 pm

I got a phone call from my research coordinator to come in for more bloodwork to be done locally. Evidently they are questioning Genzyme's results. So on Monday I went to a local lab to have the tests run. The results came back in such a way that all my counts were in the proper range except for one. That particular count was one point below the required range for that one particular number. Genzyme wants me to retest this coming Monday, March 8 but have the blood fedex'd to them for the testing. I want it tested locally so that the results are compared apples to apples.

I don't care if Genzyme wants it tested at their site that's fine with me but I still want it tested locally.

What do you other labrats think?
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0 lymphs

Postby k6ristin » Fri Mar 05, 2010 8:18 pm

I think maybe there has been a mix-up; because it is well known that campath has sustained, prolonged suppression of our lymphocytes. i believe i have @ 16, and i'm at month 24; going into the extension phase. these aren't abnormal results. I will find out my levels of lymphs from labs drawn this week soon, and let you know. I could be off, but most definately, everyone knows lymphocytes go to 0 and slowly come back.

Now Platelets, we need those and they shouldn't get too low and if they do, you won't be allowed to re-infuse.

all the best,
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Postby ssmme » Mon Mar 08, 2010 12:56 pm

I had another vial of blood taken again today. They told me that my cd4+ t lymphocytes were back in the acceptable range but my cd8+ ones were 1 point below the required range as of the test they ran last Monday. If the results from this test come back in range, I will be dosed starting Monday the 15th but my research coordinator is not expecting my counts to be up enough to allow me to re-dose.

She told me that if I am not eligible for re-dosing I will still get the 3 days of solumedrol. This will keep me within the study protocol guidelines and they will continue to do all the scheduled exams as if I had had the 2nd campath dose. My blinded doctor will still know nothing. I will not be able to get the 2nd dose because it has to be administered within a 6 week window following your one year anniversary following the first dose.

After the 24 months are up I will still be eligible to roll into the extension study group and if need be (and my counts are in the acceptable range) I will be able to re-dose then. But only if deemed necessary by the study doctors. Which means I would have to exhibit worsening disease symptoms (additional lesions load, edss going up, severe exacerbation, etc). I would not be able to get it just because I want it.
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Postby Lyon » Mon Mar 08, 2010 1:27 pm

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Postby ssmme » Mon Mar 08, 2010 4:04 pm

I agree with you Bob. They told me that per my latest mri completed 2 weeks ago showed no changes. They didn't elaborate so I don't know if that means literally no new lesions or no new lesions above what they consider to be a tolerable amount. I know when I was in the Tovaxin study I was told that two new lesions wasn't significant. More than two was considered significant to their study so in their reports they would just state to my study doctor that there was no significant change.

I am doing much better than I was a year ago but part of me was holding out for one more dose just hoping I might get even a little more back than what I got out of the first dose. My dream is to be able to run again.

It's bittersweet. I know that there's no reason to dose again if I don't have any new disease activity. Maybe one dose of campath did it for me and it's as good as it's going to get but I'm only human. I want more improvement. I want the cure. I want the old physical me back. By telling me I can't have the 2nd dose is taking a little hope away. Don't get me wrong I'm very thrilled to have back what I got back. I just was hoping for a little more.
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Postby k6ristin » Mon Mar 08, 2010 4:32 pm

Campath worked too well for you! Killed those bad boys. Mine just grow back really fast I guess. I feel like they'll label campath as a really good immuno-suppressant/anti-inflammatory. But I'm not disease free...so there is still something else happening. Thanks Ssme for contributing to the science of MS ! My next experiment on myself will hopefullly be CCSVI. And regarding if you get Campath in extension phase, I doubt it would be hard for you to qualify, (if you do still want it) If your cells bounce back, and you have one exacerbation during that year, you can have it. Best of luck...
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update..

Postby leetz » Mon Mar 08, 2010 6:17 pm

7n months after first campath round (5 days)....went for an MRI and this is what the results say..

"Impression:Hyperintense T2 cord lesions consistent with multiple sclerosis, less prominent as compared with Aug, 2008."

So one of the lesions actually shrunk!!! I am 7 months in and not noticing much of a difference, but this is news...good news!!! I have not progressed praise God!!!Something is better than nothing at all...sometimes:)
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby Lyon » Mon Mar 08, 2010 6:28 pm

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