Another Trial Participant story

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

Another Trial Participant story

Postby sweetC » Tue Jun 24, 2008 10:11 pm

Hi guys,

Just signed up for the Campath trial May '08. Finished my 5 day infusion 6/20/08.

Almost got excluded due to low lymphocyte count on the screening bloodwork from taking Rebif since Nov '07.

Doctor got the ok to repeat my bloodwork after I'd completed the drug wash-out period of 28 days, and my labs came back normal this time and I was accepted.

Did an MRI and some EDSS and other tests. They are very boring, especially the eye charts.

Another patient (young male) and I got the Campath infusion together last week. My IV catheter lasted all 5 days!

From reading the posts on this forum and from meeting Sugarmomma and Kristen at my doctor's office, I was expecting this to be pretty bad, but luckily/thankfully I have barely had any problems so far.

Day 1 infusion = 6 hrs
1 hr of SoluMedrol (steroid)
4 hrs of Campath
plus some bathroom breaks and time to place IV catheter, etc.

Experience: Had friend drop me off at office. Doctor told us to take Claritin, Tylenol, and Pepcid before we came in, and then gave us Zofran (antinausea) when we got there in case we felt sick. Got mild headache/bodyache/chills about halfway thru the day's infusion.
I was hooked up to an EKG before we started because I have a history of tachycardia (fast heartrate, mines always above 100) and the doctor wanted to be safe. My temp, blood pressure, and heartrate were fine through the infusion. I went home feeling fine. My treatment buddy did fine too. Took at least 2 more doses of Tylenol today to combat mild aches. Took a short walk today.

Day 2 infusion = 6 hrs
1 hr Solumedrol
4 hrs Campath

Experience: Friend dropped me off at office again. I did not even get a headache or anything today. Hooked up to EKG again, still did fine. Treatment buddy came in with a rash, so he got some IV benadryl, but I did not get a rash overnight. Took more antinausea medication, along with the Claritin, Tylenol, Pepcid, but never felt sick. Treatment buddy had an asthma attack as we were finishing up, used his Albuterol inhaler and got an IM injection of DepoMedrol (steroid).

Day 3 infusion = 4 hrs
1 hr Solumedrol
2 hrs Campath

Symptoms: Drove myself to office. Did fine again today. No rash, treatment buddy had his rash again though. No EKG today, blood pressure/temp/heartrate still doing fine. No complaints. Feeling a little tired but not bad at all. Worst part is having to pee from the steroids. Did have a little bit of the "runs" at dinner time, but I'm going to attribute that to the leftover unheated eggplant salad I had eaten earlier.

Day 4 infusion = 2 hrs
No steroids
2 hrs Campath

Experience: Drove myself to office. Still no rash, pretty tired today. Heartrate is the lowest its ever been for me at 64 bpm, probably why I feel tired. Infusion went fine. Treatment buddy still has rash, also has started having some difficulty breathing, so he is hooked up to EKG now. I took a long nap this afternoon. Starting to feel a bit weak and wiped out. Slight cough today.

Day 5 infusion = 3 hrs
No steroids
1/2 hr IV benadryl
2 hrs Campath
1/2 hr Valium

Experience: Did not feel totally well this morning, so had friend drive me to office. Woke up with VERY slight rash for the first time, itched a little. Took my Claritin, Pepcid, Tylenol combo. Doctor gave me IV benadryl to combat the rash. IV benadryl made me get restless leg syndrome and I started getting very antsy, so they gave me IV Valium to calm me down, but it burnt like hell when it was injected straight into the vein, so they diluted it and ran it over about half an hour. IV cather is finally starting to be really finicky, so infusions today did not go as quickly or smoothly as before. I was very tired today and barely had the energy to talk to the doctor. My neck aches today. Heartrate is in the 90's today. Treatment buddy is looking worn out too. He also was complaining about feeling really antsy so he got Valium as well. Near the end he was feeling dizzy so they made him lie down and hooked up the EKG again. I finished up my treatment after him this time and my friend drove me home. Ate some lunch and napped for hours. Kind of cranky today.
Was not able to sleep that night, tossed and turned for hours, got up to pee a couple times.

Days post-infusion:
Can't really remember a whole lot of specific details, but I didn't get any more rashes.
Throat is drippy (like post-nasal drip) but not sore. Has lasted for 4 days now. Doctor said its an allergic reaction like the rash, not getting sick, told me to take 3 doses of Benadryl a day to dry it up. Not dripping so much anymore, but had turned back into a cough today, will talk to doctor about this tomorrow. Did not sleep much in the 2 nights after my last infusion (steroids make me wired), but the third night I did finally get somewhat better sleep. I get bursts of energy. Went out with friends to movie and dinner, etc. Went shopping a couple times. Basically just feel a lower energy level than I did right before the infusion.

Went back to work today 6/24/08 (last infusion was on 6/20/08). Did 7 hrs reception desk, then met friends at ice-cream shop for an hour and a half, then dinner and tv at home, then drove to boyfriend's house and am now writing this story.

So overall, I have done extremely well with this Campath study so far. It has gone WAY better than I what I was prepared for. Maybe I got the "low dose"? But they don't tell you that, its a blinded study!

Anyway feel free to ask me any questions about stuff I probably forgot to mention. And I'll post with more updates if and when anything changes, but so far I'm just a bit more tired/weak/slow than usual and my throat is drippy/coughy. Oh and I have pimples from the steroids but not the worst I've ever gotten from it either.

-Caroline
<Frustration is trying to find your glasses without your glasses.

RRMS since Jan. 2006>
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Postby sugarmomma » Wed Jun 25, 2008 5:40 am

Dear Caroline,
First, I am so glad you ended up in the study and that things went so well. I also remember meeting you. I hope that seeing Kristen and myself , as well as finding this site, helped you to make the best decision for yourself.

It nice to know that Kristen and I are no longer in this by ourselves and that we have other people to measure our success along next to :)

It makes me extremely happy that you had a bearable experience with the infusion and that the side effects were minimal. I wish you and the other patient the BEST and hope that we all see amazing things from this drug. I also want to commend you for being so brave. This is important not only for you, but for all present and future generations of people suffering from MS.

Also, I have a number of female friends with MS. We are all relatively young (in our 20's and early 30's). We call ourselves the MS hipsters.. There are five of us so far, but we meet up every few weeks, and go for sushi or to a comedy club. You are welcome to join us , if you are interested. Sometimes it is nice to get with the girls, relax, and compare scars :)

Thank you so much for posting your experiences here and sharing :)

Maybe I will see you at the Dr. Krocheck's office sometime.
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campath

Postby k6ristin » Tue Jul 22, 2008 7:13 pm

Thanks for posting your experience, Caroline! It's so important to get this first-hand information out there for us guinea-pigs! Keep me posted :)
You're very brave!
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Campath study update...

Postby shardinay » Tue Sep 23, 2008 9:48 pm

SweetC~~ I happened upon this site and your info on the Alemtuzumab/campath study. I really appreciated you telling what happened w/ the infusions. I am considering the phase III study, and was wondering how you are doing a few months after your infusion. Do you regret doing it? Have you noticed anything really different with your health or w/ your MS? I'm a little worried to do it because I have 3 small children and don't know what to expect. I love the idea of having one week of treatment and then nothing for a year. Any info you can give me would be great!
Thanks!
Shar
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Postby Grumpster » Mon Nov 03, 2008 1:50 pm

I am likely to start a trial for Campath in a week or two and I have heard different stories on how things go for people. I am a bit nervous, but things are pretty bad for me right now, so I kind of feel like what the hell... I'll do it. I'll post if and when I start the phase 3 trial from genzyme

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Postby Lyon » Mon Nov 03, 2008 3:21 pm

Grumpster wrote:I am likely to start a trial for Campath in a week or two and I have heard different stories on how things go for people. I am a bit nervous, but things are pretty bad for me right now, so I kind of feel like what the hell... I'll do it. I'll post if and when I start the phase 3 trial from genzyme
Thanks Grumpster.

I don't want to give you false confidence/hope but you will be watched over pretty closely and will be in good hands.

Can I say with certainty that you'll be 100% safe and will benefit? NO, but considering the situation and the options that are open to you, my vote is that you are taking a risk with hope of gain that isn't out of line.

Bob
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Postby Grumpster » Tue Nov 04, 2008 1:34 pm

Thanks Bob,

I need something to give me that hope and sense that this is not really the end of the road, just a junction. Who knows, but what is certain is that my current protocol is not working and my trajectory is not good. Somehow I still made it to work today, but I often get here and figure out that I can not function very well. Good thing I am a good actor / faker. It sucks to have a great job and know that your ability to do it is running out so fast. Pitty party at my house... any takers? Kidding
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Postby CureOrBust » Tue Nov 04, 2008 5:30 pm

Good luck, I hope to follow you soon. But I am planning a celebration for when it works, the odds are on our side. :D

This is a bet, if it were in a casino, would be a no-brainer. :lol:
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