Saturday, October 22, 2011

News from ECTRIMS 2011

One of the biggest annual events for information sharing in the world of multiple sclerosis research and treatment is the ECTRIMS meeting going on now in Amsterdam, The Netherlands.

It fills me full of excitement and hope for the future of MS patients the world over!

Here is a video from my former neurologist and lead investigator who recruited me into the TRANSFORMS clinical trial for Fingolimod (Gilenya). He is attending the ECTRIMS 2011 Conference.

You can also find posts on Facebook by Dr. Kantor here:
Multiple Sclerosis Migraine (Daniel Kantor)
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Here are just a few links to news coming out of ECTRIMS this year:

 Advances in Using Stem Cells as a Treatment for MS
by Julie Stachowiak, PhD
The most progress in looking at the effect of stem cells in humans with MS (as opposed to experimental mice models) has been made on hematopoietic stem cells. This research was presented by Mark Freedman, MD from the Ottawa Hospital Research Institute at ECTRIMS 2011.

Hematopoietic stem cells (HSC) are taken from adult bone marrow and blood. They can also come from umbilical cord blood. They are multipotent, meaning they can turn into only a small number of different cell types. HSC are quite rare, making up less than .1% of bone marrow cells. These cells act as the foundation for the immune response.
[Click here to read the entire blog post.]

Acorda Therapeutics Announces Data on AMPYRA® Presented at 5th Joint Triennial Congress of ECTRIMS and ACTRIMS
“Analysis of walking speed data from the extension studies showed that people who responded to AMPYRA had sustained improvement compared to non-responders for up to five years on treatment. Just as importantly, safety data from the extension studies and from one year of real-world use showed that the long-term safety profile of AMPYRA was consistent with that observed in clinical trials, with no new safety signals emerging.” --  Ron Cohen, M.D., Acorda’s president and CEO.
Read more:

BG-12 Data Impress in Multiple Sclerosis

October 21, 2011 (Amsterdam, the Netherlands) — A phase 3 study of oral BG-12 (dimethyl fumarate, Biogen Idec) in relapsing-remitting multiple sclerosis (MS) found that the drug reduced by roughly half the proportion of patients who relapsed at 2 years compared with placebo.
The findings, from the Determination of the Efficacy and safety of oral Fumarate IN rElapsing-remitting MS (DEFINE) trial were released today here at the 5th Joint Triennial Congress of the European and Americas Committees for Treatment and Research in Multiple Sclerosis (ECTRIMS/ACTRIMS). The study was supported by Biogen Idec.
"We conclude that these results may provide a therapeutic option for patients with relapsing MS, with robust efficacy, a good tolerability, and excellent safety profile for this oral drug," study presenter Ralf Gold, MD, professor and chair, Department of Neurology, St. Josef-Hospital/Ruhr-University, Bochum, Germany, told attendees here.
Ocrelizumab Benefits in MS Maintained to 96 Weeks
There is increasing evidence that B-cells play a role in the pathogenesis of MS through antibody-dependent and antibody-independent mechanisms, the authors note. Rituximab, an anti-CD20 monoclonal antibody that selectively reduces CD20-positive B-cells, showed "proof of concept" efficacy in MS in phase 1 and 2 investigations, they say. Ocrelizumab is a recombinant humanized version of rituximab meant to provide some advantages in potency, tolerability, and safety for the long term.[Click here to read entire article]

Late-breaking presentation of BRAVO results and additional analyses from ALLEGRO study reinforce novel clinical profile of laquinimod

Pre-clinical evidence supports that laquinimod targets peripheral inflammation and keyneurodegenerative processes occurring directly in the CNS
[Click here to read entire article]

Leading Organisations Launch New Coalition to Address the Needs of People with Multiple Sclerosis in the Workplace
Today, business and health leaders join forces to announce the formation of the ms&work coalition, the first group of its kind to address the needs of people living with Multiple Sclerosis (MS) in the workplace across Europe.

The coalition, an alliance of Merck Serono; a leading healthcare company, Microsoft Corp, Employers’ Forum on Disability (EFD) and the European Federation of Neurological Associations (EFNA) was announced at the 5th Joint Triennial Congress of ECTRIMS and ACTRIMS, Amsterdam, The Netherlands.[Click here to read entire article]

Extension Phase Data on Oral Teriflunomide for MS Released
October 21, 2011 (Amsterdam, the Netherlands) — The benefits of oral teriflunomide on clinical and magnetic resonance imaging endpoints in the pivotal phase 3 Teriflunomide MS Oral (TEMSO) study were maintained in the extension study, 5 years after randomization.
[Click here to read entire article]

These links represent just a fraction of the news coming out of ECTRIMS 2011. It's really refreshing and exciting to see so much research being done -- and with so many positive results! I would have loved to have been in attendance there and gotten to hear all the news first hand. I've been to Amsterdam once and it was beautiful!

Monday, October 17, 2011

Gilenya (Fingolimod) to be highlighted at ECTRIMS meeting Oct 19-22

This is awesome news! From what I read in this article, not only does Fingolimod reduce the relapse rate but it appears to also protect the brain from atrophy. I had heard hints of this before but it's expected to be backed by data gleaned from the very trial I was in (TRANSFORMS) when presented at the ECTRIMS meeting to take place today.

Basel, October 17, 2011 - Novartis will showcase data from 13 abstracts on fingolimod (Gilenya(®)), at the 5th Joint Triennial Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) and Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) taking place from 19-22 October in Amsterdam.
Novartis drug Gilenya® (fingolimod) has more than 20,000 patient-years of exposure and shows up to 71% reduction in annualized relapse rates in MS patients with highly active disease | Cision Wire: "Fingolimod 0.5 mg reduced the rate of brain atrophy, or brain volume loss, compared to interferon beta 1a IM over 12 months, irrespective of disease
activity prior to study start as shown in an analysis of the pivotal Phase III
TRANSFORMS study[3]. (Abstract P907)"

'via Blog this'

Sunday, October 9, 2011

Good to go for another six months

It's been more than a week since the most recent neuro checkup but life has gotten in the way of blogging about it.

In preparation for my first meeting with my new neuro who happened to also be the lead investigator in my clinical trial I had kept a calendar with scribbled notes of symptoms and issues I'd been having since August 5th. I felt I'd been having my first relapse (and no matter what anyone might say, I still believe it). I thought he would be interested to know.

I transferred all these scribblings from calendar to notepad and organized them so that I could recite all the pertinent information in chronological order and give him an overview or all the crap I'd been dealing with. It started with the 24 hour bug that had me so dizzy and nauseated I had to crawl on hands and knees to go toss my cookies in the bathroom.

Then it was on to a couple weeks of nearly bedridden fatigue. I defy anyone without either chronic fatigue syndrome or MS or some other disease that will flatten you face first to the pillow to try and comprehend what this is like. You can't. It's like you have suddenly fallen victim to an invisible monster who weighs a ton and sits on your chest pinning you to the bed. Any effort to resist or fight against it is futile.

When the fatigue started lifting after a week or so, I had that buzzing, funny-bone-whacking feeling in my groin again. I'd had this a year ago and underwent a battery of tests from CTs to ultrasounds, only to have it disappear before anything was every found. This left me feeling that it was most likely MS.

Well, it was back with a vengeance and I had to use my cane for 2 weeks lest my leg go unexpectedly out from under me. When that sensation occurred, it was without notice and would lock my leg up much like giving your elbow a good solid whack on the nerve will momentarily cause that (not so funny) buzzing whilst simultaneously locking your limb up and briefly rendering it useless.

I never knew I had a funny bone in my groin area, but sometimes MS is weird like that. Making it nearly impossible to define the symptom and explain it to anyone. Even my doctors (who have big labels on my files that say "CAUTION: EXTREME HYPOCHONDRIA" no doubt) will just look at me quizzically and nod, smiling. That infuriating, placating, condescending smile.

That's pretty much how this whole visit went. I thought I was coming armed with all kinds of documentation of my first ever relapse since starting the clinical trial for Fingolimod (now Gilenya) over four years ago, and he was just nodding and smiling. Never asked a question.

Instead he whacked my knees with his rubber triangle hammer, had me follow his finger with my eyes, stick out my tongue and walk across the room. He rubbed my left ankle and right cheek simultaneously and asked if they felt the same. I resisted asking him if they felt the same to him. "No, one feels like my ankle and the other feels like my cheek."

I knew what he meant but felt he needed a little help earning his pay, so a little playful obstinance couldn't hurt.

Then he said "Well, it looks like you are doing so well we don't have to see you for another six months! Isn't that great!!?"

And I just sat there. I couldn't meet his level of cheerfulness at this news without asking, "That's it? No blood work to check my liver? No urine?"

And he just smiled that dopey smile and said "Nope. You're doing fine. What I think you had there last month was a little viral stomach thing that just aggravated old symptoms. You didn't really have a relapse. You are doing so well and have been on this so long that we can just see you again in six more months."

Now some folks would say that was a great visit and why am I complaining.

Part of me wants to just take the same freakin' happy pill my doc had eaten and say what the heck and be done with it.

But most of me has alarm bells going off and wonders why, if this drug has only been on the market for a little over a year, and I've been taking it for a little over 4, and long term affects are not know, then WHY wouldn't you do routine blood work? There are possible issues with elevated liver enzymes -- I actually had one occurrence of that during the trial -- and so at the very least double checking that might be in order, no?

And he didn't seem at all interested in the fact that I'd had a breast cyst and had to have it aspirated. I had a surgeon try and talk me into a biopsy but chose to wait three months and have a repeat mammo and ultrasound.

I'll be scheduling those this week.

This drug works in ways that I obviously don't have the education nor background to fully comprehend, but I do know that it sequesters T-cells in the lymph glands. I do know there are lymph glands throughout our bodies. They couldn't tell me what that cyst's contents were as it contained too few cells to determine.

So, I'm happy that my doctor was so happy with all he'd seen at our visit, but I didn't leave there feeling all warm and fuzzy.

Maybe it's just the hypochondriac in me, but I'm still waiting for the other shoe to drop.

Saturday, October 1, 2011

BOGO Large Pizza Fund Raiser Card from Dominos

If you live in Florida, Georgia or Alabama, you can get a great deal on Dominos Pizza while helping my son raise funds for the end of year trip for his band class.

For just $10 you get a card that is similar to a credit card and is good thru June of 2012. Use your card to get a FREE LARGE PIZZA every time you order a large pizza! No limits!! Having a party? Imagine the money you'll save when you order 10 large pizzas and get 10 FREE!

He's got to be done with fundraising and turn in the money on Monday, October 3rd, 2011 (THIS MONDAY), so we need your help now!

Here's a link to read a PDF version of the flyer that explains it more in detail:

To place your online order, just click the buy now button below. Be sure to include your shipping address. We will be mailing out cards the following week.