BROMLEY AND RAVEN QUESTIONS

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

BROMLEY AND RAVEN QUESTIONS

Postby Lyon » Sat Dec 29, 2007 10:12 am

.
Last edited by Lyon on Wed Nov 30, 2011 6:18 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 2:00 pm

Advertisement

Postby bromley » Sun Dec 30, 2007 9:59 am

Bob,

I'll let Robin comment on his situation, but we both met up in June when I attended his wedding and are both pleased with the results we have seen.

The three year results from the Campath Phase II were announced in October 2007. The key points on Campath's efficacy were:


Dr. Compston summarized the main benefits seen in the CAMMS223 trial as: (1) alemtuzumab is significantly more effective than high-dose IFN beta-1a at suppressing relapses and slowing accumulation of disability; (2) disability increases over time with IFNbeta-1a treatment, while it improves with alemtuzumab; (3) no clear dose response can be demonstrated; (4) the outcomes appear to be improved after three cycles of treatment; and (5) the main adverse effects are secondary autoimmunity.

"So the important message is, if you take alemtuzumab, [3] years later, your disability is [still] less than it was at the outset, so patients coming onto our trial actually improve if they take alemtuzumab," Dr. Compston said.

"We would hope that this will become a treatment for people who have early MS with signs of an aggressive disease but who aren't disabled, so we could prevent them getting disabled," he added.


My disability score has reduced to 2 when I was last assessed in November. I have had no relapses since my first infusion (end of November 2006). I do get tight calves and stiff ankles, but this comes and goes. Some days I forget I have MS - which is a real blessing.

What this means for the long-term - who knows. But the people in Cambridge are monitoring all recipients closely. More data on the Phase II trial is to be presented in April 2008.

The Phase III trials results will not be available until 2010 and I imagine that, if positive, Campath will be available in 2011. But by then, there will also be results from a range of other treatments, such as oral drugs. FTY 720 may show good results in terms of reducing relapses and may encourgae some repair. We can only work with what we have available now, balanced with an individual's assessment of the risk they are prepared to accept from a treatment.

2008 could be another very interesting year with results expected from several trials.

Ian
User avatar
bromley
Family Elder
 
Posts: 1887
Joined: Fri Sep 10, 2004 2:00 pm

Postby Lyon » Sun Dec 30, 2007 10:13 am

.
Last edited by Lyon on Wed Nov 30, 2011 6:14 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 2:00 pm

Postby robbie » Sun Dec 30, 2007 10:28 am

We would hope that this will become a treatment for people who have early MS with signs of an aggressive disease but who aren't disabled, so we could prevent them getting disabled," he added.

How many would qualify for this treatment, is there alot that start their ms this way. When he says aren't disabled i guess that means under 3,4,5? because didn't you say you were a 4 when you started. Hopefully this will be helpful to alot of people with early ms but if you start out mild and then it becomes aggressive this treatment will not be an option, i think anyway, you really have alot of hope Ian i envy you.
Had ms for over 19 years now.
User avatar
robbie
Family Elder
 
Posts: 1148
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Postby Lyon » Sun Dec 30, 2007 11:54 am

.
Last edited by Lyon on Wed Nov 30, 2011 6:14 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 2:00 pm

Postby bromley » Sun Dec 30, 2007 1:46 pm

Robbie,

you really have alot of hope Ian i envy you.


Thanks. I think of you often as we are the same age - but my MS appeared out of nowhere at an older age (39).

I hope that 2008 brings some better news for those with SP MS. Late in 2008 we should hear some early results from the trial of Lamotrigine for SP MS. Also, we should hear about the Rituximab trials. And, possibly, some early findings from some of the stem cell trials / trials to repair damage.

All the best

Ian
User avatar
bromley
Family Elder
 
Posts: 1887
Joined: Fri Sep 10, 2004 2:00 pm

Postby raven » Mon Dec 31, 2007 4:35 am

Bob,

My answers to your questions:

1. It's now almost 3 years since my first treatment (April 2005). Since treament there has been no progression, no new symptoms have occurred and no relapses.

2. Heat was never really a problem for me so nothing to report on that front. I still have some resisual spasticity in my thigh muscles but my mobility and ability to exercise is much improved. Having said that I still wouldn't be able to run without ending up in a heap after the first few steps. Apart from an initial bout of ON which resulted in my diagnosis it has not returned pre or post treatment. As a rule of thumb for me the deficits that appeared first are those which are taking the longest to rectify. I still have neuropathic pain in my legs which can be intense at times particularly if I have been on my feet for most of the day. Other symptoms such as bladder problems which appeared later have pretty much gone. I guess that's as good a recommendation for early treatment as there is. The longer you wait the more 'set in stone' these things become. Prior to treatment I was EDSS 4.5 (tested on a good day) I'm now around a 2.

3. It's almost impossible to say whether improvements are continuing to date. I would assume that they are, I am better now than I was 1 year ago however it's impossible to chart daily or even monthly, the gains are far too subtle for that.

Welcome as they are it's probably wrong to judge Campath by improvements. I went into the trial with the ambition of preventing any further disability. This appears to have been achieved, any improvements are just icing on the cake.

p.s.
they incorrectly use the word "cure"

Do they? It all depends upon your definition of a cure. For example after a mastectomy and chemotherapy a woman may be considered to be 'cured' of breast cancer. She does however retain a physical deficit. Curing MS and repairing damage already wrought can be considered to be two entirely separate issues.

Robin
Do not go gentle into that good night. Rage, rage against the dying of the light.
User avatar
raven
Family Elder
 
Posts: 240
Joined: Sat Sep 25, 2004 2:00 pm
Location: Bristol, England


Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service