Horrid story

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Horrid story

Postby bromley » Thu Sep 14, 2006 9:03 am

Not a nice story, but you do see these stories every now and then. If some of the drugs in the pipeline come good, hopefully none of us should be in this position. But it emphasises what a cruel disease this is if some would opt for death rather than go on with it.

Ian


Gardener admits helping wife die

A landscape gardener has admitted aiding and abetting the suicide of his wife, who had multiple sclerosis (MS).

David March, 57, from Caterham, Surrey denied the more serious charge of murdering his wife Gillian, 59, which was accepted by the prosecution.

The Old Bailey heard on Thursday that March tightened the string on a plastic bag he found over his wife's head at their Harestone Valley Road home.

He was remanded on bail for reports to await sentence on 16 October.

Intended suicide

Richard Whittam, prosecuting, said evidence showed that March had helped his wife kill herself but not murdered her.

Mrs March, who was diagnosed with MS in 1984, had tried to take her own life twice before and intended to do so on the day she died.

The couple had been married since 1979.

The decision to accept March's plea was taken after very careful consideration and consultation with Surrey Police and the Crown Prosecution Service, Mr Whittam said.

"The interests of justice do not require that Mr March be locked up," his counsel, Philip Sapsford, told the court.

Source: BBC News - Copywrite BBC 2006 (14th September 2006)
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Postby robbie » Thu Sep 14, 2006 2:31 pm

To bad this story is much easier to believe than the nice story…
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Postby bromley » Thu Sep 14, 2006 2:58 pm

It's a story that should be posted on the wall of the researchers' labs. I think they can be so focussed on measuring lesions / inflammation etc that they can forget how devastating this disease can be on individuals and their families. This woman did not get to a decent age e.g. 80, and spent over a third of her life with this wretched disease.

Ian
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Postby raven » Thu Sep 14, 2006 3:22 pm

Robbie, while sadly it easier to believe than the nice story, particularly in light of the stem cell debacle with ACT, the nice story is actually factual. Whilst I have no direct experience of high dose cyclophosamide I am a recipient of Campath 1H which is a lymphocyte depleting monoclonal antibody. I have gone from 4 relapses a year to none in the past 2 years. I have also regained several points on the EDSS scale and my quality of life has improved dramatically.

Whilst I was in for treatment I met someone who prior to treatment was confined to a wheelchair and needed hep feeding himself and brushing his teeth. When I met him it was difficult to tell there was anything wrong with him.

I have no axe to grind and no agenda to push, treatments such as this are not for everyone and I certainly recommend anyone to take qualified medical advice but in my case my life has been transformed for the better.

Robin
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Postby Lyon » Thu Sep 14, 2006 3:47 pm

oo
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Postby robbie » Thu Sep 14, 2006 4:34 pm

I guess that trials work for some and not others, what I don’t understand is why there is such a low percentage of success with anything. I have never been in a trial but the things that you must go though for such a shot in the dark. You think of success rate along with the fact that you have a 50% chance of getting the placebo and it it’s a pretty grim picture. When you talk about success it’s only slowing things down or having 2 attacks a year instead of 4 it’s not saying you don’t have ms anymore. Are having trials at a 33% success rate and billions of dollars the way to finding something that works for everyone, Find something for all of us. Sickness is a business and we are the moneymakers for others. My wife’s diabetes, they were able to come out with insulin to keep her alive and make money for others for the rest of her life, find a cure for Christ sake. I hope when all the pharmaceutical execs get into their BMW’s at night they can sleep knowing the people that bought them are suffering. From a cold to ALS it’s all money in the eyes of the people who don’t give a crap about us and the ones that do really don’t matter, same as politics..
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Postby raven » Fri Sep 15, 2006 3:24 am

In my case there was no chance of getting a placebo, the trial was not blinded. Also, given the aggressive nature of my MS I was in the unenviable position of acting then or not acting at all.

The interim results give the effectiveness of Campath at 75% which surprised me when they were released. I know of no-one who has been treated who has subsequently relapsed (Those running the trial in the UK were also a little surprised when I discussed it with them).

Not only has my MS completely stabilised but is actually slowly reversing. Stabilisation was my goal, the reversal of my disabilty an unexpected but very welcome bonus.

Given the promising results of treatments in the pipeline, Campath, Rituximab, Tovaxin etc. the future for MS patients is looking much brighter than it was a few short years ago.

Robin
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Postby Lyon » Fri Sep 15, 2006 10:01 am

oo
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Postby raven » Fri Sep 15, 2006 11:11 am

Hi Bob,

I tend not to say too much unless asked for several reasons. I don't want to be seen as a campaigner for a particular regimen, I am not medically qualified and knowing that MS affects everyone differently and treatment results vary I don't want to create false optimism.

Lastly I don't want to sound like a smug git who's recovering whilst many here do not have access to the treatment that I have had and are suffering.

If you have any questions at all though I will be more than happy to answer them.


Regards
Robin

------------------------------------------------------------------------------------

Hi Bob I'm Robins fiancee and I will tell you what he wont as he feels uncomfortable blowing his own trumpet so to speak. Prior to his first Campath treatment Robin had great difficulty walking and to be frank his life was going down the tubes at a rapid rate of knots. He literally went for this treatment as he felt he had nothing to lose. The results have been astounding for him (actually for us both as we would not have met or decided to get married).

It has given him back a lot of what he lost to MS. He went into this treatment hoping for nothing more than to stop further progression on the downward spiral any improvement purely a bonus. He has been lucky he has indeed seen improvement and has not to date suffered a relapse of any kind and can now do things he could not have done prior to his treatment.

The fear of side effects puts a lot of people off looking into this treatment and a lot of people would not be eligible for the treatment but I agree with you and feel Robin should indeed post more about how he is doing. It gives people hope and maybe for a few it might even get them to consider going outside the box to seek different forms of treatment.

Its not a treatment option for everyone but surely if something shows potential its worth sharing so others can consider it for themselves?? What people do not always realise is that there are many forms of chemotherapy some nastier than others. I can say that Robins side effects with Campath were minimal, in fact all he suffered was a rash that went away in two days....

Hope this helps

Jules
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Postby Lyon » Fri Sep 15, 2006 11:28 am

oo
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Postby robbie » Fri Sep 15, 2006 12:01 pm

I was just wondering if your severity of ms has an affect on your neurologist’s decision to get you involved in some of these therapies. I know when I was in better shape my neurologist wouldn’t even think of these therapies. Do I have the last word in how I want to treat my ms or does my neuro have the last say in what I can try. I go to her every 6 months and for the longest time my EDSS score hardly changed but now it’s climbed quite a bit. You would think that this would open more doors for me as far as therapies are concerned...You sounded quite bad raven so you and your doctors must be very happy. Was this recommended by your doctors?I go back to see her in December and think its time to have a little more say in weather i go down or up. I sometimes forget that i am just a number to her and that while she is out playing golf i am wondering what to do, i read all of these different treatments and all the people that are being helped and wonder why can't this be me, it would be so eaisy to miss the boat!
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Postby raven » Fri Sep 15, 2006 12:44 pm

Bob,

I can assure you that I have no financial interest in, or connection to either Genzyme or Schering AG. In my case Campath has given me my life back and hope for the future but whether it becomes licensed for MS is a matter for the trial statisticians and the FDA/NICE.

I had my first MS symptom (optic neuritis) in 1998 and was diagnosed with MS in 1999. By 2004 I had severe difficulty walking (about 100-200 yds max) severe spasticity, bladder control problems (my trips outside of the house became dictated by proximity to toilets for fear of washing my shoes in public!) and neuropathic pain which extended from my feet to upper thighs. I also suffered from myoclonus (jerking legs) during the night. I was assessed as EDSS 4.0

I was first treated in April 2005 and had my second treatment in July 2006. As of now my walking range is over a mile without needing to stop (although the legs do start to complain). My bladder function has returned to normal (thank god!) and the neuropathic pain is markedly reduced although still there particulary when I'm very tired.

You are correct to assume that the longer the symptoms had been there the longer they seem to be taking to disappear but all of them are markedly reduced from my pre-treatment condition.

As far as side effects from treatment are concerned the only one I had was a rash which was considered normal for Campath treatment. The whole hair falling out thing is not an effect of Campath.

After treatment you do have to be careful to avoid contagion for a few months as your immune system is depleted. One participant developed listeria after eating unpasteurised goats cheese but I have had no infections as a result.

There is a risk of developing Graves disease (underactive thyroid) which can be controlled easily but this didn't happen to me.

Perhaps the most serious risk is that of developing ITP (ideopathic thrombocytopenic purpura) a potentially fatal auto-immune condition.If caught this disease can be easily cured however one trial participant died from a haemorrhage as a result. I have blood tests once a month to check for this condition. AFIK 3 trial participants have developed ITP (from a cohort of several hundred)

But the biggest thing for me is that I have had no relapses and have not progressed since treatment which I undoubtedly would have done otherwise. My outlook upon life has changed from expecting to deteriorate to looking forward to the future. (apart from maybe paying for the wedding!!!!)

Any more? Just ask...

Robbie, I did my own research, decided Campath was my best (and possibly only) chance of getting off the rollercoaster so I went to my neurologist and asked to be put forward for the trial. If I were you I would start to become very pro-active in your own treatment. If you don't ask you don't get (sadly)


Best wishes
Robin
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Postby Lyon » Fri Sep 15, 2006 1:35 pm

oo
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Postby robbie » Fri Sep 15, 2006 2:23 pm

no i have SPMS now. the worst thing right now is the spasams in my legs. i can't walk any distance at all.
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Postby bromley » Fri Sep 15, 2006 2:42 pm

Robbie,

I can only reiterate what Robin says about being proactive about treatment. I was dx in May 2004 with RR aged 39. Not having a clue about this disease I spent too long on the internet finding out about this disease and treatments. I knew nothing about MS and was shocked to learn that the aim of the treatment was to slow down disease progression not stop it or reverse it. I came across the following article on the UK MS Society website about Campath:

We have treated a small group of people with aggressive relapsing-remitting multiple sclerosis using an experimental drug called Campath-1H. This drug deliberately damages the immune system and is good at stopping further relapses. A large clinical trial is currently comparing the effectiveness and side-effects of Campath-1H and interferon-beta.

We imagined that Campath-1H treatment of multiple sclerosis would prevent further deterioration but would do nothing for damage already acquired. Quite unexpectedly however, most patients treated using a single dose of Campath-1H show a steady improvement in their disability over the next 12-24 months. This was encouraging but difficult to understand. The brain was being encouraged to repair itself; but why?

This project tests one possible explanation: that cells of the immune system are altered after Campath-1H treatment and they travel to the brain to release factors that encourage repair of nerve fibres. This touches on a fundamental question in multiple sclerosis research: does the process of inflammation, which is generally regarded as damaging, also actually encourage survival of nerve fibres?

Our approach is to look at the immune cells in the blood of people before and after Campath-1H. We put them in cultures in the laboratory and see if they release substances known to promote brain repair. So far we have had mixed results from these experiments. Secondly we take the soup released by these immune cells and pour it onto nerve cells growing in culture and watch what happens. Interestingly, after Campath-1H the immune cells do seem to encourage nerve cells to grow. Now we have to find out how!


This was the first time I had seen any reference to treatments leading to stability and improvement in disability. The research is being overseen by doctors / academics at Cambridge University where Campath was created.

I wrote to Dr Coles expressing an interest in the trials and met him in June 2005. He considered me too mild at the time (but thinking back, he had probably heard of the death on the trial). A couple more attacks earlier this year have left some deficits so I wrote to Dr Coles again and saw him in August. I should get my first infusion at the end of November. I have also been fortunate to correspond and meet with Robin.

Campath does have risks and Dr Coles ran through these with me and how they would seek to mitigate them. It's a very personal decision where individuals wil have to weigh up the potential risks and benefits. For me, the key factor was that I was not prepared to see myself progress i.e. each year getting abit worse. Three years ago I was running 1-2 a week. Now I walk but much slower than 'normal' people. Another big issue is that I have young children (6 and 4). It kills me every day to say 'daddy can't do this and daddy can't do that'.

Campath isn't a cure, but at the right time in the disease can prevent further damage and, for some, lead to improvements. For me it also buys some time. There has been an explosion of treatments in trial since I was dx. In the next few years there might be some bigger breakthroughs -treatments to protect axons from degenerating (which really ramps up in the SP stage) and treatments to promote re-myelination. Campath won't be my last treatment, but I hope it will keep my CNS in reasonable shape before something better is available.

So like Robin, I'm not promoting it - it may do nothing for me - but it was the one that caught my eye when I was researching treatment options. When you next see your neuro, perhaps tell her what you really want from treatment and go armed with some information of trails you might be interested in. The least she can do is support you with a letter (if that's the way you want to go). All of us are different in how we react and respond to this disease - there's no right or wrong. Some choose to take no medication, others the licenced treatments and others seek to get on treatment trials. Whatever you decide to do - best of luck.

Ian

PS I just saw that you had posted to say that you were SP. My other neuro thinks that Rituxan is very promising (being trialled for SP and PP). There are a few more trials on Dignan's list for SP.
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