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Posted: Tue Mar 03, 2009 5:46 am
by ssmme
I had my 1st day of infusion yesterday. No side effects, just a little tired. Nothing really to report. Day 2 started about 30 mins ago with solumedrol. I'll post again later.

Marcia

Posted: Tue Mar 03, 2009 12:24 pm
by Lyon
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Posted: Tue Mar 03, 2009 4:30 pm
by Grumpster
I am wishing you the best of luck! The fatigue did not really kick in until day 3 for me. Keep up on the benadryl.....

Posted: Wed Mar 04, 2009 8:02 am
by ssmme
Day 2 went without anything to report. So far day 3 has been crazy. IV Solumedrol went fine then the first campath bag tubing sprung a leak and sprayed everyone so hazmat cleanup had to happen. A second bag was mixed put into the iv pump and low and behold the pump cut the second bags tubing. More cleanup and another bag to mix, a new iv pump and we're finally in business. I guess it'll be a pretty long day since it all got started late.

No side effects yet. The nurses keep telling me tomorrow will be bad without the solumedrol to counteract the side-affects. We shall see. I'll report any changes if they occur today otherwise I'll write again tomorrow.

Marcia

Posted: Wed Mar 04, 2009 9:58 am
by Loobie
Good luck Mar,

You can do it!

Posted: Thu Mar 05, 2009 7:17 am
by ssmme
Day 4 has gone off with nothing much to say. No side effects yet. My 6yr old son was dx'd with influenza A late yesterday so we're scrambling for a germ free place for me to avoid him and the other little germ bags that live in my house.

Marcia

Posted: Thu Mar 05, 2009 12:26 pm
by Lyon
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Posted: Thu Mar 05, 2009 8:20 pm
by Lars
Absolutely thrilled for you Marcia!
Lars

Posted: Fri Mar 06, 2009 12:33 pm
by ssmme
Day 4 went uneventfully but alas that evening I got the rash. On the torso, up my neck, and inside of my arms and thighs. It didn't itch or hurt. It was just there. Day 5 - I am very lethargic today but all in all I'm okay. I just want to sleep.

Marcia

Posted: Sat Mar 07, 2009 5:28 am
by Loobie
So good to hear it's been semi-mild for you Mar.

Posted: Sat Mar 07, 2009 10:19 am
by ssmme
Day 5 infusion went okay after the iv was finally in. Veins blew out in my arms with every stick (about 5) then we moved to the top of my foot and it took. I'm done for a year. I'm planning on staying home all week this week. I will be stir crazy but it's the price to pay being a labrat.

I'll "blog" again when there's something to let you all know.

Marcia

Posted: Tue Mar 17, 2009 5:59 am
by ssmme
I've made it a full week out from treatment (and then a few days). I sometimes feel extremely exhausted but then every once in a while I feel like I am fatigue free for an hour or two. After feeling fatigued non-stop for a few years I have been very excited to have these spells. Maybe it's a sign of good things to come.

Marcia

Posted: Tue Mar 17, 2009 7:21 am
by Lyon
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Posted: Thu Mar 19, 2009 9:37 am
by ssmme
Oh Bob, I sure hope your right.

Posted: Thu Mar 26, 2009 4:29 am
by ssmme
I'm two and a half weeks post campath and all my ms symptoms are out on the surface. I still have zero white blood cells and my body is trying to 'shake off the shock' of being zapped with a chemo drug. I rejoice in the fact that RIGHT NOW there are no b cells or t cells attacking my myelin. My clinical staff and doctor warned me that I would feel worse before feeling better. I have no new tingles or weakness or any other new ms symptoms but all the old ones are there with a vengeance.

Every once in a while though, I feel these bursts of fatigue free time. They don't last super long but they happen. My clinic's research coordinator said that those spells would begin to last longer. Yay! I can't wait.

Friday is my first post campath full exam with my blinded and unblinded doctors. I'll ask about my edss as compared to the pre-campath visit but I don't expect it to be much different this time. Maybe even a little worse.

Come on plasticity...I'm counting on you to help me out.

Take care,
Marcia