Another alemtuzamab labrat

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

Postby Lyon » Thu Mar 26, 2009 5:49 am

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Postby Jamie » Mon Apr 06, 2009 8:50 am

I know this sounds far fetched but Chris will back me up, Mel's brain fog and fatigue went immediately after the last dose of hicy.

it was incredible.

She was tired from the chemo and all the other drugs but she could THINK again.

That leads me to think that maybe it's part of the active disease process too rather than just the damage.

Hard to believe the damage could have repaired so quickly.
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Postby ssmme » Fri Apr 24, 2009 9:35 am

Just a status report...

I contracted my first cold this week but am suffering through it fairly well.

I am still reminded every day that I have ms by the tingling and oven-mitt feeling in my left hand. The good news so far is that I'm not limping constantly. I go much longer everyday before the left leg limp comes back. Yesterday afternoon I went to the mall with my 14yr daughter to pick out a cotillion dress and shoes and I didn't take my walking stick. I did okay. Usually by the afternoon I can't get around well without the walking stick so maybe the duration of time from morning until the point that I need the stick will continue to increase to the point that it'll start to collect dust in my closet. I think the reduction in fatigue is also helping me get around a little better. I got up really early so I could go to the mass that my 1st graders were doing this morning at school. My girls were doing the readings and my son carried the cross at the beginning and end of the service. Anyhow, I got up extra early and got ready before I realized that I wasn't feeling the ms fatigue that is so similar to a hangover in the morning.

I hope and pray that this isn't temporary but as with anything concerning ms it could just be the RR course for me.

I'll put in another status check in a while.

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Postby Lyon » Fri Apr 24, 2009 1:10 pm

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Postby chrishasms » Mon Apr 27, 2009 8:18 pm

I'll back Jamie up with what he said.
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Postby Lyon » Tue Apr 28, 2009 5:54 am

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Postby ssmme » Wed Apr 29, 2009 11:10 am

Well the bad news is I went to my primary doctor and was dx'd with a uti and an ear infection. I started keflex but I'm not improving yet so now they're calling in a z-pak. (BTW I'm allergic to penicillins and refused cipro so their aren't too many options left)

The silver lining is that I'm not feeling all my ms symptoms on the surface like I usually do when I get an illness like these. And to make it seem that much more significant to me is that I was dx'd with two of them simultaneously. Just a bladder infection on its own will usually set me back to needing my walking stick just to get around.

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Postby Lyon » Wed Apr 29, 2009 12:19 pm

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Postby ssmme » Thu Apr 30, 2009 7:43 am

This thread is my only "diary". My life is a bit hectic right now so keeping a better journal would be near impossible. It would be just one more to add to the todo list and I think the camels back would break.

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Postby ssmme » Mon May 25, 2009 6:09 pm

It's been almost a month since I posted out here about my campath journey. Things are good right now. I'm not walking with a noticeable limp at this point. It's been a over a month that it's been like this so I feel comfortable saying it. I think it's the inflammation that's gone down and allowed me to get some mobility back. I'm also not so chronically fatigued.
I'm keeping my fingers crossed that things keep going well.

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2nd round of treatment

Postby ssmme » Sat Jan 30, 2010 2:47 pm

I go in the first week of March for my second round of campath. Everything looks good and I have had only one exacerbation this year. It was a couple of months after the first treatment and I was told that was common after the initial treatment. I am still not using my walking stick. Its been collecting dust this year. I'm not cured but I don't have any new visible damage. Yay!! Hopefully there won't be any exacerbations after this treatment. I'm keeping my fingers crossed. Oh and by the way Campath has helped me and I'm glad I chose to participate in this trial. It bought me a year. Who knows over the long term but I'm pleased for now.

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Postby patientx » Sat Jan 30, 2010 5:25 pm

Thanks for the update, Marcia.

Please let us know how the 2nd infusion goes.
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Postby ssmme » Wed Feb 24, 2010 9:11 am

I'm a little frustrated but hoping everything is okay. I got a call yesterday from my research coordinator that said my lymphocyte count was at 20. She and the doctors at the clinic think it was a lab error but if it is right then I am precluded from getting treated on Monday. I had more blood drawn yesterday and won't know till Friday if the original was an error. At month 9 my count was 180 which is on the low end of normal where they expected it to be. Now I just wait...
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Postby Lyon » Wed Feb 24, 2010 1:34 pm

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Postby ssmme » Fri Feb 26, 2010 10:28 am

Okay...Now I'm officially puzzled...Lab results came back exactly the same. Obviously it wasn't an error. My research coordinator said she looked back over my results since the first treatment and my numbers got to where they are now at month 3 and haven't gone up since then. Since I never got sick or felt bad they never paid much attention. (I think their embarrassed for not paying more attention.) Now they have a call into Genzyme and are waiting to find out what to do next.

:-(
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