DMD vs Stem cell clinical trial

[suelew]

I saw this artical in latest MSWorld email on need for persons with MS to participate in stem cell clinical trials: http://msworld.us1.list-manage2.com/...c&e=cf29f03546

I am hoping to do Lemtrada in near future but wondering if anyone has any advice, pros and cons of doing this Stem cell clinical trial? Thanks for responses!

[MarkLavelle]

Sue,

When I had cancer I had no problem signing up for a 'CyberKnife' trial, but that was basically a case of life or death, and I was still in my early 40s, with young kids.

My MS is 95% sensory and barely progressing, so I'm inclined to stick with 'conservative' treatment (Copaxone), but if I was younger I would definitely be looking at trials.

If the stem cell trial has any up side, and no more down side than delaying conventional treatment, I'd be inclined to go for it. If the down side is no worse than the down side for other diseases for which stem cell replacement is a 'mature' therapy, I'd probably still go for it (and almost definitely if I was under 40 and already having mobility problems).

Only you can decide, and only you can know what is right for you, but I encourage you to try to keep fear out of the equation.

Good luck!

[Kimba22]

Hi suelew,

Pro - If effective, you'd be among the very first to benefit!!!

Cons - Safety, the possibility it won't prove effective (at all or just for you), and having foregone proven, FDA approved therapies in the mean time. It's always possible to end up worse because you participated in the study. And people do die. (All points my MS Specialist has drilled into me.) Consider your time, work, family comittments, and any cost of travel/ lodging, as well.

Much is learned whether the clinical trial is effective or not, so we owe a debt of gratitude to anyone willing to participate in these trials. Good luck to you whatever you decide.

[BadAttitude]

Per the link: "Stem cell treatment for multiple sclerosis begins with the introduction of adult mesenchymal stem cells (MSC) taken from the Stromal Vascular Fraction (SVF) — the fatty material that is removed in procedures such as lipsosuction — which is processed and reintroduced back into the body. From there, these MSCs are believed to be able to travel past the blood brain barrier and repair the myelin sheath around nerve cells that becomes damaged by the immune system in MS in a process known as “remyelination.” In addition, stem cells also act as modulators of the immune system in patients with multiple sclerosis, as MSCs secrete cytokines and other molecules that can have an anti-inflammatory effect or produce an inhibitory action on pro-inflammatory pathways."

So there are two upsides to this treatment in my opinion: 1.) liposuction. I could sure use some of that. The other upside being that it is a different mode of treatment, with a different objective than preventing relapses as stated by my Lemtrada literature. I would welcome successful remyelination to repair existing damage from past relapses. However, being a current Lemtrada patient at this time, and enrolled in monitoring for same for the next 48 months, I am presumably not a candidate for this trial because Lemtrada effects must be considered in combination with the hoped for relapse prevention properties hoped for from the stem cell treatment. How would researchers know which treatment was responsible for preventing relapses? They couldn't.

But wait: If the Lemtrada effect wears off after the year four or five mark and I start having relapses again, or wind up secondary progressive, might I be considered a viable candidate for Stem Cell trials or treatment by then? I am hopeful that stem cell trials show potential in both treatment objectives for obvious reasons, the most selfish one being...me. And of course, altruistically, for my fellow MSers.

Just thinkin' out loud. Discuss?

[suelew]

On Stemgenex site I saw a FAQ asking "can a stem cell treatment be given along with current MS treatment?" Reply is "We don’t know yet. This will not be studied in early clinical trials, as this would make it very difficult to measure the true effects of the stem cell therapy. However, a combination therapy may be effective for Multiple Sclerosis and is likely to be studied in the future."

I would think that stem cell treatment would hopefully be a viable option in the future if the "Lemtrada effect" wears off. And, that gives time for stem cell treatment to be perfected and studied more too.

I've gotten insurance approval and am now waiting for the Assistance fund to open again for Lemtrada. Once I get that I'm all set to go with no out of pocket cost for Lemtrada. It appears stem cell treatment would be very expensive. My thinking is to do Lemtrada now, especially since I've seen many positive outcomes. The stem cell option might be for me if Lemtrada does not help enough or eventually wears off.

Thanks all for comments! Much appreciated!

[alk]

I asked my Dr about the stem cell trials when I was considering Lemtrada. He said that they don't have the data to really tell how effective stem cells were. He didn't see a reason to put your body through all that when Lemtrada has shown to have good results with less damage to your body at this time. He also said that he had a patient get in and get a stem cell transplant in Chicago and by the two year mark he had to put her on another DMD.

I ended up choosing Lemtrada. I figure if they find out how to cure MS with stem cells I can always do it later.