Campath Info

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

Campath Info

Postby RicMa » Mon Oct 11, 2004 3:34 pm

Dear all,

I have not heard much about Campath in the last months. News about Campath looked very promising only one year ago. Anybody knows anything about current research and trials ?

Thanks

Ric
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Postby dignan » Tue Oct 12, 2004 9:38 pm

Did you see this from Felly on the "Team Project: List of every MS Treatment currently in trials"?

Name of drug/compound: Campath-1H (alemtuzumab)
Manufacturer: ILEX Oncology
Location: Addenbrooke's Hospital, Cambridge, UK, Croatia, Italy, US
Current FDA Phase: (I/II/III/IV) A Phase II, randomized, open-label, three-arm study comparing low- and high-dose CAMPATH® and high-dose Rebif®
Treatment for: (MS Progression/MS Fatigue/etc.) MS progression
Intended for early active RR MS Sub-types (Relapsing-Remitting, etc.)
Mode of Action: (how it works) To affect immune function
Mode of Application: (e.g., Injection/IV/etc.) infusion
Website for more information: http://www.ilexonc.com/CAMMS223.htm

Results expected late 2005/2006
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Postby RicMa » Wed Oct 13, 2004 2:31 pm

Thanks.

Ric
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Postby Lab_Rat » Mon Nov 01, 2004 1:43 pm

Hi all,

I just found this forum today, and was suprised to see a thread about Campath. The reason that I'm at home surfing the web rather than working is that I'm recovering from my one year "anniversary" dose of Campath. If anyone would like to know anything about the drug and how it has affected me just let me know. I'll be around for the rest of the week so will have plenty of posting time available.
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Postby mscaregiver » Mon Nov 01, 2004 2:25 pm

Hi Lab Rat and welcome to the forum, please post about your experience with Cambath , we always want to hear all the info we can here.

Philip
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Postby Lab_Rat » Wed Nov 03, 2004 4:03 pm

Well, here it goes. I was diagnosed with RRMS in Aug. of ’03 (male, 37 y/o at the time). My symptoms pretty much ran the gamut…. horrible balance/ walking problems, having to run to the bathroom every 5 minutes, having trouble remembering where the bathroom was, stiff, sore muscles, trouble swallowing, pretty much the whole 9 yards. My neuro. gave me the CRABs tapes and told me to call him if I had any questions. I only had about a million of them. I could only bring myself to watch one of them (rebif) as I’ve had a huge phobia about needles pretty much my whole life.

I recalled the NP at my clinic telling me about a clinical trial that she was recruiting patients for, and that I was exactly what they were looking for…. recent diagnosis, at least 2 attacks, and no prior treatments used aside from steroids. What really stuck in my mind about it was that there were no self injections, just an IV dose once per year. I called her and went in for a visit, got some info, and a few days later signed on to the study (it’s a phase 2 study).

The dosing itself consisted of starting with a steroid drip for about 30 minutes. The steroids are to counteract the “temporary return of symptoms” (one of Campath’s side effects), followed by a 4 hour dose of Campath administered via IV infusion, and this was repeated for 5 days. The dosing itself wasn’t bad at all…. I just sat in the clinic’s dosing room and watched TV (though afternoon TV leaves a lot to be desired), then my wife would drive me home. The symptom’s coming back were scary to say the least (I felt like all of my previous steroid treatments and physical therapy work had been instantly erased). I also had a nasty rash that was sort of like the hives, was very tired all of the time, and seemed to have no strength or energy whatsoever. All things considered, the side effects were pretty mild and were gone within a week. Then I returned to work, and waited to see what would happen.

As time went on I noticed things getting better and better. Things that I’d thought were gone forever slowly started to come back. Bending over to pick things up quickly and easily, standing on tip toes and reaching overhead to get at a high shelf, being able to balance on one leg, being able to do a “high kick” (sort of like a punter) is one of my favorites. My wife was really happy the first time I did it, but after the 10,000th time it was rather clear it was wearing a bit thin with her, but I never get tired of doing it :)

This last summer I even rode a bike again (a bit wobbley, but passable), and I even braved going out on to a golf course again. And I didn’t look or feel like a golfer with MS…. I just looked like a lousy golfer who needed a lot of practice (sort of like I looked prior to MS). Then around July 4th my wife and I hiked the summit peak trail (5 miles) and hiked up Silver mountain, both in Michigan’s Upper Peninsula. On Labor Day we walked across the 5 mile long Mackinac Bridge that connects Michigan’s two peninsulas and hiked a short trail in the Straights state park. All together we covered between 8 and 9 miles in one day. And the best part is that I didn’t have to worry about keeping medicine refrigerated and injecting myself as a reminder that I have MS. Campath has allowed me to forget that I have MS, at least some of the time. I'm even working an average of 45 to 50 hours a week, with no ill effects other than a case of shingles brought on by stress and lack of sleep (NOT fun).

And last week I went in for my second dose at my one year anniversary (only 3 days this time). The side effects popped up again, but weren’t as bad as the first time. I’m off of work until next week so my immune system has time to recover because Campath does a number on it and I will be open to colds and the flu for a while.

The way that Campath works (from what I understand) is that it goes in and wipes out certain white blood cells/ lymphocytes that are crossing the blood/brain barrier and attacking my brain. My immune system is supposedly weakend by this. But I haven’t really noticed that I was catching more colds than anyone else. The thyroid problem that has been noted in the pilot study hasn’t popped up with anyone at my clinic (there are 10 people on the study I think). A couple of peoples’ thyroids got a bit overactive, but they righted themselves without any medication. Of all the people on the study, we’ve only had one person who’s had a relapse, and she was in the Rebif group. There are 3 groups in the study; one on high dose Campath, one on low dose Campath, and one on Rebif as a control group (I’m in the high dose Campath group).

They’ve even opened up a second study (much smaller than the first… only 45 people nationwide I believe) where people who have been on CRABs for up to three years, and the meds aren’t really working for them are being given Campath. And all of them are doing really well…. they’ve had one relapse in that group, but I guess that she was in pretty rough shape before she even started.

Anyhoo, I guess I’ve rambled on long enough…. sorry if I’ve bored you :) Anyways, that’s my Campath experience, and needless to say I love it. Everything I’ve said here is in no way “official”, just sort of my observations, and I’m sure I’ve managed to get some things wrong and left others out. And feel free to ignore any spelling or grammar errors. I’m a techie, not a writer. Thanks for listening.
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Postby mscaregiver » Wed Nov 03, 2004 4:57 pm

Thanks for posting your info Lab Rat, this type of personal experiance is always helpful to everyone..

Philip
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Postby Arron » Thu Nov 04, 2004 1:00 am

fantastic information! Campath is indeed very promising... early indications on it is that it has a "window of opportunity" to work, so to speak, early on in the disease. I have even heard some reports of it "stopping" MS if used early enough... let's keep our fingers crossed, and let me join Philip in thanking you again for taking time to share your story with our community.
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Postby JFH » Thu Nov 04, 2004 7:59 am

I dont want to put too much of a dampner here - and I'm sure Labrat has thought through all the risks but ..

there have been two deaths attributed to Campath and it is not a very large scale study.

That was enough for me to turn it down, but good luck to you Labrat.
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Postby Arron » Thu Nov 04, 2004 11:58 am

Hi JFH, thanks for sharing!

Can you provide a link to the Campath-related death information? I believe Campath is also used for leukemia (in a much stronger dose, don't quote me on either of those facts as I have not researched it) and I'm curious if the MS dose is what the deaths were attributed to.
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Postby Lab_Rat » Thu Nov 04, 2004 12:52 pm

The NP warned me of that in our initial meeting. Stretching back my memory to over a year (so don’t quote me on this) the people who have leukemia receive larger doses over a longer period of time, and she said to try and avoid the internet when making the decision to participate or not as there may be some uncomfortable stories connected to Campath, but to keep in mind that all of those stories would most likely be referring to patients with advanced leukemia. Since they receive a larger dose over a longer period of time, I guess they would be left open to infections for an extended period.

Since the immune system takes such a hit during the dose of Campath, I’m warned to be very careful for the first month or two… wash hands constantly, keep hand sanitizer handy, supplement with plenty of vitamin C, and try to avoid people with colds for a prolonged periods of time (don’t visit sick nephews, etc). The only problems that I’ve encountered were that I bit my lip while going gung-ho at Arby’s a few weeks after my dose last year and it took about 5 days to heal up with plenty Listerine involved, and I cut my hand with a utility knife at work which some Neosporin and a band aid took care of in no time.

Supposedly two months after the dose my immune system is back up to speed, minus the lymphocytes that the Campath has eliminated. In theory, other white blood cells will pick up the slack for the missing cells, and though I have no proof of this, in my experience I don’t get any more sick than anyone else who I work with (and even less than some).

As to deaths as a result of Campath I have no information, other than I heard from the NP that one of the patients caught Listeria (though this was a long time ago, so don’t quote me on it) but the outcome was something that I never heard. As to deaths related to MS and Campath, any info would be appreciated. However, going on my experience as a guide, severe infection risk is minimal as long as I’m careful.
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Postby JFH » Fri Nov 05, 2004 4:44 am

Sorry guys no link the info came from my neuro when he was outlining options open to me as far as dmds earlier in the summer. He isnt keen on it.

Awake all night worrying about something but only just grasped it. The deaths were in one of the oncology studies, so my post was a little skewed, my apologies. But still too much of a risk for me.

I understand (again form same source) that it's 50% chance of contracting Graves disease too - dont know what that is but I'm sure I dont want it as well!

EDIT :: Some stuff on Graves Disease from
http://www.ngdf.org/faq.htm

What is Graves' Disease?
The leading cause of hyperthyroidism, Graves' disease represents a basic defect in the immune system, causing production of immunoglobulins (antibodies) which stimulate and attack the thyroid gland, causing growth of the gland and overproduction of thyroid hormone. Similar antibodies may also attack the tissues in the eye muscles and in the pretibial skin (the skin on the front of the lower leg).

Facts
Graves' disease occurs in less that 1/4 of 1% of the population.
Graves' disease is more prevalent among females than males.
Graves' disease usually occurs in middle age, but also occurs in children and adolescents.
Graves' disease is not curable, but is a completely treatable disease

Symptoms
Fatigue
Weight Loss
Restlessness
Tachycardia (rapid heart beat)
Changes in libido (sex drive)
Muscle weakness
Heat intolerance
Tremors
Enlarged thyroid gland
Heart palpitations
Increased sweating
Blurred or double vision
Nervousness & irritability
Eye complaints, such as redness and swelling
Hair changes
Restless sleep
Erratic behavior
Increased appetite
Distracted attention span
Decrease in menstrual cycle
Increased frequency of stools
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Postby raven » Fri Nov 05, 2004 5:25 am

Graves' disease is not curable, but is a completely treatable disease


Would I swap MS for a completely treatable condition?

An emphatic yes!

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Postby JFH » Fri Nov 05, 2004 10:34 am

Would I swap MS for a completely treatable condition? An emphatic yes!

Me too Robin :!: But I dont want both. I feel really guilty at not having your courage to try this therapy and if (when?!) it is shown to be a) safe and b) effective we'll all be very much in your debt. I really do wish you all the best and hope nothing goes wrong for you.

Cheers
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Postby Lab_Rat » Fri Nov 05, 2004 2:07 pm

Yes, Graves disease was a major concern while making my decision to enter the clinical trial. After all it certainly had a creepy sounding name. Anything with the word GRAVE in it is sort of a red flag in my book:).

However while dicussing my options for treatment with friends & family I found out that a good friend of my parents has Graves disease and she says that it's no big deal.... just take a little pill once a day.

As to the % of people who develop the condition while in Campath, it was 25 or 30% of the patients who participated in the pilot study in England. And of those who developed it, most if not all of them had the condition "right itself" within a few months without needing any medication. Please see my 1st post about the thyroid problems with the people who are on the study at my clinic. I have no links to post with regards to the pilot study as most of the information I have on it came from talks with the nurses and neuros at my clinic.

As to people not wanting to get on the trial, I certainly don't blame them as it was a very difficult decision for me. I was rather depressed at the time because this crappy disease popped up and upset the applecart of my (finally) happy life. I mean, my wife and I hadn't even reached our first anniversary yet. I had finally gotten my life together after years of aimlessness (though fun) wandering, and it looked like things were finally breaking my way. Then MS popped up. I guess I was in kind of an "I don't really give a crap" sort of an attitude. I mean, could things get worse? So I rolled the dice....

And yes, I understand that this is a clinical trial and things might not pan out with Campath.... but at this point I feel like it has given me my life back. I even hopped in my truck earlier this afternoon and drove into town to gas it up and take it to the car wash (not that it does much good because I live on a dirt road). But just a year ago doing something that "normal" seemed like something that I might not ever do again.

So all of my posts ought to be taken with a grain of salt as you now know some of my background. I guess I might be seen as sort of a "cheerleader" for Campath. But it certainly works for me :)
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