Keeping my fingers crossed!

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

Keeping my fingers crossed!

Postby raven » Sun Mar 06, 2005 9:46 am

I have been given a chance to participate in the camms224 trial. After carefully weighing up the potential risks and rewards I have decided to go for it. Campath is certainly at the extreme end of MS treatments with some pretty scary potential side effects, but the chance to potentially stop MS in its tracks is far too good to pass up whatever the risks.

I have to have a series of blood tests next Tuesday and as long as they don't show up anything out of the ordinary I have a 'pencilled in' date for the treatment to commence on April 4th.

If it's possible to feel apprehensive and eager at the same time, that's how I am now!

Robin.
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Postby Arron » Mon Mar 07, 2005 12:01 am

Dear Robin,

Our admiration for your courage and pioneering spirit is so strong... thank you for participating, we wish you the best and hope you will keep our eager community updated with your progress in the trial.
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby Lab_Rat » Sat Mar 12, 2005 1:08 pm

Robin,

Welcome to the Campath bunch! I've never heard of CAMMS224 (I'm on CAMMS223), are you currently on any of the CRAB's and they're not quite cutting the mustard so you're being given Campath, or is this the beginning of phase III?

Either way, I hope it works out for you, keep us posted. I have my 18 month check up in April and belive it or not, I'm actually looking forward to it.... keeping my fingers crossed that my disability level drops again. Considering how I've been feeling lately, I won't be suprised if it has.

Good Luck :)

Rat
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Postby raven » Sun Mar 13, 2005 2:37 am

Hi Rat

camms224 is for those that have previously 'failed' treatment with the interferons. I was taking Rebif for a period of time some years ago. I stopped because of side effects, dubious benefit and cost (this was before the interferons could be prescribed on the NHS and it was costing me £1000 a month). Whilst I'm currently fairly low on the EDSS scale my MS has become much more aggressive over the past year. I currently get relapse after relapse with very short intermissions between.

Arron, thanks for the kind words. I can't call it courage and don't consider myself a pioneer. I'm very scared that my condition may be reaching the turning point towards progressive. At that point there are no treatments that will affect the course of the disease. Like some others who post on this site, there are no risks that I wont take to be free of this curse. The early results from Campath are incredibly encouraging for those who are still in the relapsing phase. The vast majority of patients have either completely stabilised or are improving (on EDSS scale as well as MRI).

I have considered the risks carefully and consider the possible benefit outweighs them.

I honestly believe that if these results continue Campath will become a frontline treatment for MS. I feel lucky to be given the chance to benefit before the drug is properly licensed.

Robin
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Postby OddDuck » Sun Mar 13, 2005 4:55 am

Robin,

Hey, good luck and I wish you all the best! My fingers are crossed for you.

Keep us posted!

Deb
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Postby raven » Sun Mar 13, 2005 11:17 am

Thanks Deb.

I appreciate the support.

Robin
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Postby raven » Sat Apr 09, 2005 2:46 am

My Campath treatment took place last week. Apart from a rather spectacular rash, which is apparently perfectly normal, I had no real side effects from the treatment at all. What I did find very encouraging was that there were two others there who were undergoing their third annual treatment as part of Camms223. Both of them have shown massive improvement since their first time. The organisers were very careful to point out that any recovery is entirely down to the self-repair of the body and that results cannot be guaranteed, but I can't help being very optimistic indeed.

I guess only time will tell.

Robin
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Postby bromley » Sat Apr 09, 2005 5:16 am

Raven,

Glad to hear your treatment went well. One can only hope (and pray) that this becomes a breakthrough treatment of the (not too distant) future. A treatment which can pretty much end exacerbations and provide a chance for the body to repair itself is what most of us (those with RR ms) are after. LabRat's account of his improvements certainly gave me hope.

I'm sure all the users of this site will wish you the best of luck - please keep us all updated on your progress.

Bromley
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Postby Lab_Rat » Sat Apr 16, 2005 6:49 pm

Raven,

The one bit of advice I can give is to be patient. I'm not sure what kind of shape you're in, but in my case it was a very slow process of getting things back to normal over the past 18 months.

For me there was no "WOW!" moment where I suddenly felt great, but just a slow progression of getting better over time. Every now and then I'd challenge myself (bicycle, golf, hiking, walking curbs like a balance beam, etc.), but for the most part it was walking across the warehouse or down the stairs and thinking "hey, I couldn't really do that very well last month!" sort of moments.

I was hoping that there would be some sort of preliminary report put out so we could all find out how the trial is going so I followed the link in JFH’s post and asked Dr. Coles himself, but unfortunately there won’t be a peep ‘till 2007. And yes Bromley, it was me who asked the question :)

Raven, just hang in there. I really hope you have the same success with Campath that I've had. Keep us posted.

Rat
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Postby raven » Mon Apr 18, 2005 4:00 am

Hi Rat

I'm certainly not expecting miracles overnight. Just the thought that I may have halted the progression is reward enough, any improvements are a huge bonus.

I wonder how many of us perform these little tests on ourselves, you mentioned walking the kerb. I test myself going down stairs, seeing how far I can get before I need to grab the handrail etc. So far, I have noticed a very slight but definite improvement compared to pre-treatment.

I do feel that Campath has given me a chance to get my life back, for that I am very grateful indeed.

Robin
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Postby bromley » Mon Apr 18, 2005 6:09 am

Rat / Raven,

It's great to hear of two people with MS who are seeing improvements (Raven at an early stage of course) rather than the usual downward slide. Your stories together with Anectdote and OddDuck give hope to us all. Keep the good news coming.

All the best.

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